Note to Self

The Fading

2010-04-23T07:19:00.000-07:00

I find the door to his room unlocked, which is a new thing.
According to Kent, he doesn’t know what knocking means anymore. Nor does he know how to find the door should he want to open it in the first place. When I step into his living room he’s not waiting for me in anxious anticipation like before. Instead he is lying down in his bedroom, napping between breakfast and lunch. I slip into his room quietly so I can observe. I stand over him and watch him sleep and stare for many long minutes. I linger above him watch him quietly, like a ghost.

His bedroom is dim and neutral. The lull of the air conditioner floats in from the other room, dulling the intermittent chatter of the staff on break outside his window. They convene for smokes two floors beneath him. Dad used to complain about the noise, but now after several minutes he forgets he’s annoyed and slips into a light sleep. When he wakes the smokers are gone, as if they never existed in the first place. We are learning that momentary setbacks have this way of magically working themselves out. If left disquieted long enough, he will forget what he was complaining about before. We have learned the trick of leaving the room, only to return 15 minutes later to a more peaceful Dad. We allow him his time to forget. The dementia haunts and heals his memory in a predictable sway, like a metronome.

The room smells of Barbasol and cranberry candles, the ones Stephany insisted Dad would use when Lois came by for romantic evenings. In reality these evenings never occurred, and the candles have collected dust around their virgin wicks, bases still wrapped in decorative raffia. In faded calligraphy the labels read Brazilian Passion.

Dad is lying above the covers, straight as an arrow on the edge of his narrow mattress. The bed is still made and unruffled, like him. His feet hang off the end with his shoes still on. He has recently gone from leather lace-ups to slip-ons, yet he still insists on wearing pants that zip and belts that buckle. It is midday and he is asleep on his back in a pair of tan cords and the plaid Eddie Bauer shirt I gave him many Christmases ago. It’s forest green, with deep blues and Burgundies, and a collar that buttons down smartly at the ends. His glasses remain perched across his nose, disappearing into graying temples. His soft peppery hair is combed neatly to the side. Where his heavy gold timepiece used to be, a thin plastic watch with an elastic band encircles his wrist. When he remembers to press the faux winding knob, a female voice chimes the time robotically: “It’s…six….thir…ty…five.” On his back my father rests, mouth agape, breathing silently. He appears formal, teetering on the verge of comfort, napping as if he were lying in a casket.

I approach him quietly and seat myself on the corner of his bed. I am gentle and slow, like an old cat. With the bend of my weight on the mattress he wakes, and blinks several times to focus. I watch him without saying a word. I want to know if he can sense me. His eyes then open widely, focusing on the ceiling as if floating on the sea, staring at the sky.

“Hey stranger.” I say quietly.

“Hey stranger,” he repeats smiling, still fixated above. “Who is this?” He reaches out to touch my hair.

“It’s Teen. Your middle daughter.” 
“Hey Teeeeen! What are you doing here?”

I move my head into his field of vision.
“I came to visit you, I missed you.”

His eyes scan the room slowly from left to right but his body remains motionless. “Oh Teen,” his eyes finally meet mine, cataracts reflecting a grayish cloud. “I’m so glad you’re here.” He is gushing with relief--As if at any moment I may disappear into thin air.

“I’m here, live and in the flesh.” I move in to hug him, to make myself real.

“Thank God. I was real worried about you honey.”

“No need to worry.” I hugged him tighter, his bones small in my embrace. I breathed into him, taking in the faint scent of Irish Spring. Something about him was different this time. Somehow he seemed more fragile, more tenuous.

“I’m so glad…” He said, voice breaking, “I’m so glad you’re here, Teen.”

“Me too Dad.” I hugged him tightly but his body remained tense. “But why are you upset? This is supposed to be a happy time.”

I felt his arms loosen around me and I faced him, brushing a lone silver strand from his forehead. On his upper lip a grey shadow of overgrown stubble had emerged, forming the beginnings of a thick Greek moustache. He looked familiar yet unfamiliar. I have never before seen him unshaven.

“I love you honey.”

“I love you too, Dad.”

“I’m so glad you’re here" he said, finally softening.

"I thought you were dead.”

The Highway

2010-02-03T08:50:00.000-08:00

I can do this. I am totally prepared. I am visualizing the plane flight going smoothly, Dad is asleep in the chair next to me. He stays asleep the entire flight, Cairey and I are toasting over glasses of Chardonnay from plastic cups. Everything is normal. Everything goes according to plan.

I picture this scenario a thousand times over; it’s the filmstrip of my mind. Over the past 6 months I’ve become a self-help junkie. I download Tony Robbins audio books and listen to them as I do my hair and makeup in the morning. For the first hour of each day, I feel like they work. Until I get an email from Stephany, 9:00AM Seattle time, and it slaps me back into reality. Dad is moving to Seattle, the Power of Positive Thinking won’t save you.

Needless to say I try. For the entire month of April I prepare. I even order Tony Robbins Videos from Netflix, but they aren’t as good--mainly footage of Tony hyping up mass audiences, pumping his fist in the air and guests walking across burning coals triumphantly. I don’t really need that much power. All I need is enough strength to fly my dad from Michigan to Seattle in one piece. If you can picture success, it will happen. This is the soundtrack to the filmstrip in my mind. I’m not sure if I believe this, but I do it anyway.

I have my mothers old Valium from when she had back surgery 6 years ago in my pocket. 4 little white pills cut into halves and folded into a small tin foil square. Does Valium expire? I have already taken a half this morning, but my hands are still shaking and I feel nothing. I wonder if feeling nothing is a good thing. If that’s how you’re supposed to feel on Valium, or if I should just take the other half…

Cairey is with me, a childhood friend from Michigan who volunteered to lend a hand. Before yesterday we hadn’t seen each other in 4 years. Since then she had her first child and half a dozen surgeries to correct a series of random yet severe ailments. Cairey thrives on drama, she is her best in a crisis, and when she saw my Facebook update that I was moving my father across the country she called me immediately. I never considered bringing a helper with me before. It seemed like too much to ask of anyone. When she offered my immediate response was no, but inside my heart was being squeezed by an anvil. It was too much to ask.

“Teen, I insist, this is what I’m good at. This is what I live for.”

I rationalized a family trauma like this was Cairey’s specialty. The fact that she had been working in eldercare for 10 years made me feel better about accepting the grand gesture. It took about 24 hours for me to happily cave. Cairey was great at this kind of thing. Where my natural tendency was to flit from danger like a skittish bunny, Cairey rushes forward like a trusty Labrador, overflowing with unconditional love and fluffy golden hair.

This morning she is my guardian angel. I look at her across from me in the car, all blond curls and sparkling blue eyes; she is placid chewing on ice after a recent Mandible adjustment surgery. She picked out a bright violet top for the trip, something optimistic and bold. I love her even more for this.

We pull up my rented SUV to the entrance of Independence Village. It is warm today for Michigan at 8:30AM. The car is packed as if we are preparing for a road trip with a newborn. Diapers, check, bottle of water, check, lullabies, check, warm blanket, check, snacks check. I grab my pre-printed directions to the airport from my laptop bag and lay them between the center console and Cairey’s seat. The drive to the airport is typically a one-hour without traffic. Our flight leaves at noon; we allow ourselves 2.5 hours to get there. The Alzheimer’s association, Northwest Airlines, and all of Dad’s doctors suggested extra time to make it. I’m nervous there will be too much downtime. Dad despises waiting, a prime opportunity for meltdowns.

“Do you mind driving?”
“Not at all babe, whatever works.” She grabs my hand and looks into my eyes for emphasis. “We’re doing this, and it will be fine, everything will be fine,” she says.
“I know, I say smiling weekly, “thanks to you.”
“Take another half.”
“No, I’m good. I want to be ready, just in case anything goes wrong.”
“Teen, shit will go wrong, but we’ll handle it.”
“You’re right…”I say, as I reach for my father’s headphones and lay them inside the passenger door.
“You can’t control everything. Life is messy, you’ve got to roll with it.”
“I know, I just want to be prepared.”
“We are, but now you just need to be calm, for your Dad. But that Redbull your drinking probably isn’t helping.”
“You’re right, I say, and toss the slim silver can into the garbage. And with that we breeze through the entrance of Independence Village, superhero and sidekick.

When we arrive Kent and my father are standing in the middle of his room with their backs to us. As I get closer I can see he hasn’t showered or shaved, meaning he and Kent had not had a good morning. Kent flashes me a look of commiseration as I walk through the door and my heart sinks. If there was any day I needed him to be in unusually good spirits it was today, but I am not so lucky. I try my best to override his mood with a cheerful hello. Divert attention, force a new moment. Be positive. Picture everything going smooth.

“Good Morning Sunshine!” I say as I move around him, into his field of vision. He is looking beyond me, unable to recognize my face.
“Who is this?” He asks, agitated.
“It’s Teen and Cairey! We’re here to take you away!” I give him an enthusiastic hug, but body is rigid in my arms.
“What are you doing here? Where are we going?”
“We’re going to Seattle, to see Steph and the boys, Yay!”
“We are?”
“Yes, aren’t you excited?” Cairey interjects.
“Well, how are we getting there?”
“We’re flying on an airplane.”
“Where’s the airplane?”
“In Detroit, we have to drive to the airport first.”
He focuses his eyes on me, finally. A look if disgust spreads across his face. As if this is the first time he has heard of this plan although we have been reminding him for months and on several occasions he brings up the trip on his own and even goes as far as to mention how excited he is to get the hell out of Independence Village. But today is a new day. Blank slate. And all is a big unwelcomed surprise.
“Oh Christ. You know….” he shakes is head and focuses on the ground, “how long will it take to get to the airport?”
“About an hour.” I reply.
“And how are we getting there?”
“We’re driving.”
“What time are we supposed to be there?”
“Noon. Dad, don’t worry, we have the whole thing planned out, we have all your bags packed and have printed out direction and everything. I even have your favorite Beatles Tunes on my Ipod in the car. You have nothing to worry about. All you have to do is hang out and enjoy the ride.”
He looked at me, cocking his head slightly to the right and half smiled facetiously. “Whatever you say.”

I look over at Kent and silently mouth the words “Did you give him his meds?”
He nods.
“Double the Ativan?” I mouth.
He nods again.
“What time?”
Kent holds up two hands, eight fingers. The double dose of the anti anxiety medication should have kicked in by now.
Cairey helps my father with his sweater as he reluctantly forces his fist through an armhole. “I don’t know about this.”
“You’ll be fine. It will be fun!” Cairey says.

An accurate barometer for the day is Dad’s ability to sit inside the car. On a good day, he glides in with only a few directions: "A little to the left, a little to the right, put your hand on the back of the seat…and you're in.” That's a good day. Today sitting in the car takes a dozen of mini adjustments. Dad is turned around backwards, the seat is invisible, the car is too high, the interior too monochromatic. When I say back up he inches forward. He is angry. Expletives are shouted in frustration that we all try to ignore. Dad has no idea where the seat is. Kent steps in and picks his leg up off the ground and half carries him into the car. My father exhales angrily and shakes his head as I bend across him to fasten his seat belt.

“There we go.” The seatbelt clicks. “All snug like a bug in a rug.”
I look back to Kent who is unexpectedly tearing up. We haven’t even left the curb and my take-charge daughter façade begins to crack.
“Thank you so much Kent,” I give him an extended hug. “You were his world at this place.” We disengage and he leans over to shake Dad’s hand.
“Bye John, have a safe flight.”
Four years of laughing with him, being the shoulder to cry on, washing his hair, escorting him to the doctor, answering 3:00 AM phone calls, cutting up his hamburger, feeding it to him like a baby, mopping his urine off the floor, reporting everything back to me, being the highlight of my fathers days…
He shakes Kent’s hand and forces a smile.
“Bye” my father says dryly, as if he were passing a stranger on the street.

The ride to Detroit Metro is 90 miles. Cairey sits in the front seat with Dad, and I sit in the back between them, monitoring everything. The radio is tuned to NPR, the temperature is 72 degrees inside the car, the A/C is turned off but the fan is blowing, I adjust it just so to keep the noise down. The front seat windows are cracked two inches to allow for fresh air. I scan through my Ipod to find the Beatles playlist, of which each song has been perfectly planned out for the ride, first the upbeat tunes for the excitement of leaving, then the more mellow ones, for when the meds kick in and dad starts falling asleep. The center console holds a cracked open bottle of water, along with two additional Ativan just in case. We are prepared. Everything is going smoothly.
Cairey drives with one hand on the wheel, one hand on my printed directions. The car smells of lavender and Jasmine. Cairey’s shampoo. She told me she chose it specifically for the trip. Lavender calms.

“Where are we going?”
“The airport Dad.”
“Which airport?”
“Detroit Metro.”
“Well how far is it?”
“About an hour.”
“Oh Christ…”
I catch Cairey’s reflection in the rear view mirror. She is telling me to relax with her eyes.
I scroll through my Ipod until it lands on Ob-La-Di, Ob-La-Da and hit play.
“You know…this car is very loud,” he begins.
“Oh? Last time you said it was comfortable, that’s why I rented it again.”
“Well…it’s not comfortable. It’s extremely loud.”
“Maybe if I turn up the music a little…”
Happy ever after in the market place...
In his rearview mirror reflection I can see him scowling. The Beatles carry on, Cairey is chewing ice. I countdown the minutes for his meds to kick in, my insides ache with uncertainty. My veins constrict with worry.
“It’s hot in here.”
I reach over from the backseat to adjust the A/C. It begins to blow but creates more noise than the music, so I flip it to low and reach my hand behind him to lower his window down.
“There, now you can have some fresh air to cool you off. Is that better?”
“It’s fine.”
Ob-la-di, ob-la-da, life goes on, brah...
The car enters the highway, 84 miles to go. Bright orange signs scream out at us from the shoulder, Construction ahead, 5 miles.

“What road are we on?”
“We’re on the highway.”
My father laughs to himself. A highway? You call this a highway? It feels like we are driving over dead bodies!”
“There’s a little construction on the road, so there are a few more bumps, but it will be over in no time.”
“Are you kidding me? Well why the hell are we taking this road?”
“Because it’s the only way we can get to the airport, Dad.”
“Jesus Christ don’t you ever think? Didn’t I ever teach you to think?”
Happy ever after in the market place...
I reach into my pocket and grab the tiny square of tin foil with 4 halves of Valium inside and grab the bottle of water from the center console.
“How much longer?” He barks.
We have been on the road all of five minutes.
“About an hour.” I lied, it was at least 90 minutes with construction, of which I did not plan for, nor did I plan for his agitation over noise, which was apparently amplified beyond comprehension, to him.
“An HOUR? Are you kidding me? I have to sit in this tank for an hour, this is crazy!”
I popped the half Valium into my mouth and began counting the seconds down in my head for it to lull me into not taking this situation to heart. He was scowling, wriggling in his seat, exhaling loudly, with every breath I am reminded of one more thing I did not prepare for. The rumbling tires on the road pierce through the jovial Beatles chorus and I watch my father writhe under his seat belt in frustration.
“GET ME OUT OF HERE!”
I am cringing. Cairey is peaceful as Ghandi in the driver’s seat chewing her ice. She is unflappable.

“I can’t believe this! I’m going to be sick! How could you do this to me?
It sounds like there are bombs going off outside!”
I lean over to speak quietly in his ear, “Dad. I’m sorry. I didn’t realize there would be construction on this road…” I lay my hand on the back of his head and stroke his hair. When all else fails I touch him. I’d like to believe it reminds him I am his daughter. Even if in the heat of the moment, when he is screaming at me.

“You didn’t think! What did I teach you? I thought I raised smart girls! You were supposed to think!” He begins to demonstrate with his hands, using Alzheimer’s logic. “You were supposed to think okay…if I have this road…and it’s a 100 miles…then you take a certain amount of time on this road…divided by the miles….and you plan for x miles, and divide by…and you get there! In a car that’s not a tank! You go from A to B! It’ s that simple! Why didn’t you think this through?”
“I’m sorry Dad.”
“Oh bullshit. You’re not sorry. You just didn’t think! This is torture. You are torturing me!”
He puts his fingers in his ears and leans forward, as if he just launched a grenade. Cairey is going 85, green signs whirl by, Detroit 75 miles. She catches my glance in the mirror and flashes a knowing grin, like Yoda. It’s OK, this is not your Dad, it’s the disease. Just ride it out.
“How much longer?”
“About 45 minutes.”
“45 minutes! Jesus Christ! I’m going crazy in here! In about 2 seconds I’m gonna jump out this window!”
“No you’re not.” The superhero chimes in, stern but calm. My father looks at her incredulously, as if she just magically beamed herself behind the wheel.
“Who are you?”
“I’m your daughter’s best friend from elementary school. Do you remember Pinecrest?”
“What the hell are you talking about…Pinecrest? Oh Jesus Christ GET ME OUT OF HERE!!!!”

Our baby is having a tantrum. He stomps his feet on the ground. I am a bad mother. Why didn’t I see this coming? Why didn’t I plan for this? My last resort is the meds. I am weak for this but I don’t care, 20 minutes into the drive and we have already doubled his anti anxiety medication for the entire day. I don’t care. He hates me right now. I reach into my bag and empty the Ativan into the small of my palm. What’s left of the shakes have subsided to a tremor, the Valium must be working. Dad…you’re next.

“I’m going to take one of these pills Dad. They're meant to muffle the noise from the road. They work on headaches too. I’m taking one because the car is really loud. Do you want one too?”
“Well hell, of course I want one if it’s going to stop the sounds of these God Damn bombs going off!”

The song switches. An orange sign up ahead. Construction zone, 8 miles. I pop the Ativan inside his mouth and carefully place the water bottle on his lips. A tactile cue to grab and swallow, which he does. I can hear myself exhale quietly. Cairey pats my shoulder as in a congratulatory way, though I feel anything but victorious. The Beatles carry on:
I am he as you are he as you are me and we are all together.
“This car makes me wanna blow my brains out.”
“I know Dad. We are almost there…”

30 minutes pass. My father continues to kick and scream inside the tank. The Beatles sing, orange signs flicker by, Cairey chews her ice, I wait in the back seat for the torture to pass. I am called stupid, I am called cruel, I am asked at least six times how much longer, and with every response an outburst from my Dad follows. The meds kick in somewhere between Hey Jude and Rocky Raccoon, and with that, the anvil slowly decompresses. My hands are steady in my lap and I watch as the vibrant Michigan spring whirs by. We are doing this.

Cairey’s violet top makes her appear regal, like a queen. God save the queen. I continue to stroke the back of my father’s head; his salt and pepper hair is soft like a child’s. The ranting and squirming subside and I watch with great relief as his eyelids begin to close, then open, then close again.

The Test.

2008-11-23T09:34:00.000-08:00

It’s snowing today. Big flakes, the kind that delicately dance and pause on your coat like ivory butterflies. I catch one on my black leather glove and study the pattern. It doesn’t last long enough for me to make out its perfect symmetry.

I drop my father and Jenny off at the entry Neurology department while I park the car. The lot is massive, even on the day before Thanksgiving it is nearly full at 10:00AM. I wonder how many others are seeing doctor Bozoki for the same reason we are. I study the faces of others parking their cars, are they stressed like me? Do they worry about doing right by their parents? They probably live with their parents and take care of them in their own homes, that’s what Midwesterners do. They carry around an unshakable goodness. I fear I have lost that goodness. That New York has corrupted me and now I'm too wrapped up in my own nonsense. Overly concerned about stuff that doesn't matter. Should I touch up my highlights? Where are we going for New Year's? Does my Rolex need a shine?

I pass a stranger on the way in. He looks to be my father’s age and he is sporting head-to-toe Patagonia although he isn’t hiking, he is just getting by in Michigan. That’s just what people wear.

“Hello!” I say overly cheerful but make no eye contact. I am half New Yorker, half Michiganian.
“How’s it goin.”
I don’t answer and keep walking, feeling awkward in my high heeled boots and patent leather bag. I'm an outsider in my hometown. Just a fleeting visitor here to press a Bandaid over a gaping wound. Mr. Patagonia can probably see right through me. I pick up the pace and my stilettos dig tiny holes next to his deep tracks, like a bird hopping beside a bear. I slip and slide several paces until finally giving in and stepping inside of them, allowing them to carve my path.

I wonder if my father knows him. In our town of 40,000, those that have made to their mid-seventies tend to know each other, or have at least have heard of each other. My father no longer remembers his friends. That is, unless we name them in a pre-Alzheimer’s context. My father no longer asks about Fran and Steve, or his ex girlfriend Lois who he dated for 4 years. He never inquires about people by name unless we prompt him. I doubt these days, he remembers our names. But I don’t ask. My sisters and I simply exist around him. We are present for him. I could be Stephany or Jenny or Lois or his sister Mary. It doesn’t matter anymore. All I care about is that he feels safe around me, and that we can still laugh. All that matters is that he feels I am here. That is the best I can hope for.

When I enter Dr. Bozoki’s office Jenny and Dad are seated in the waiting room and the receptionist is already typing his history into the computer. She asks me for his health insurance card and I remove it from my father’s pocket. My father has carried the same wallet for 25 years. It’s made of smooth brown leather that has permanently molded into the rounded shape of his thigh. I open it to discover only four things inside. His license, original Medicare card, Post-it with emergency contact information, and a withered Sears family photo taken before the divorce. In his driver’s license photo he is handsome and smiling broadly--A self-assured pre-Alzheimer’s smile. There is no money or bankcards inside. On his emergency contact Post-it, I cross off his ex-girlfriend’s phone number and pencil in my own.

We let him carry this wallet out of habit.
It’s one of the last few symbols of responsibility he has left. On this trip he has just surrendered another symbol, his keys. He’s given up on unlocking his front door.
“You do it,” he instructs, handing them over before even attempting. Though somehow, he still seems to find comfort in carrying them. He absentmindedly taps them throughout the day—a security reminder. We leave these things with him. They are comfort clues. Even though his wallet has nothing of value inside and the front door to his room is always left unlocked. There is nothing sacred about my father’s world anymore. Just this morning, he emerged from the bathroom with his pants halfway down his hips and seemed totally OK with it. Even though we might not have been, but are so badly trying to be.

“Did ya fill out the sur-vee hon?” the receptionist chirped. She had a frosted look to her, with coral lips and shimmery blue eyes. Her blonde hair was swept up in a modified beehive. She was a Midwestern version of Flo, from Alice.
“To the best of my ability,” I said as I handed over the 12-page questionnaire. I noticed the gold-dipped maple leaf dangling from a thin chain across her speckled clavicle.
“Thank you dear. Now just have a seat. We’ll call ya, okee dokee?”
She retrieved my paperwork with a liver-spotted hand and smiled at me between gum chews. I half expected her to say, “Now kiss my grits!”
But she didn’t. She just chewed and smiled.

10 minutes later my father is perched on the doctor’s office examining table as he has done a million times before. At this stage, he has forgotten all the other times. This morning I have reminded him on four separate occasions that we are seeing his new neurologist and he seems pleased. He does not know why we are here, but he seems comforted knowing someone is looking after him.
The examining room is no more than 100ft squared, with fluorescent lights cascading down, casting shadows under our eyes. We all appear sickly in this room. Jenny sits next to my father and when she moves to hug him the wax paper crinkles softly.

“Excited to have a specialist onboard?”
“I guess so," he answers, raising his eyebrows and smiling beyond her. “Why are we here again?”
“We’re here finding out how the Neurologist can help you,” I say.
“Oh, good.”
“Do you remember her name, Dad?”
He looked at me and lowered his brows, a concerted effort too pluck Dr. Bozoki’s name from his cobwebby mind.
“Hm. I know his name sounds like--”
“Her name.”
“Right. Her name…Her name sounds like something funny. I think it rhymes with a ‘b’… I mean starts with a ‘B.’ Boz. Booze. Bozziiii…”
Jenny and I waited, allowing him to mentally de-archive.
“Bozakia!”
“Close.” I corrected him. “It’s Bozoki. Her name is Dr. Bozoki.”
“Oh, okay. Of course it’s not Bozokia.” He began laughing, which caused Jenny and I to join in though we didn’t get the joke.
“What’s so funny?” Jenny asked.
“Well, Bozakia means something uh, interesting in Greek.” He said as he slapped his knee and leaned back so far he nearly smashed his head on the Monet replica behind him.
“What does it mean?”
“It means….” He was laughing and tearing this time. Sometimes the anti-depressant meds would send him into these random fits of laughter that were uncontrollable, but nevertheless welcomed.
“…Boobies!”

The disease has humored him. I don’t remember my father laughing until he cried when we were kids. This is a new development that keeps us all, ironically, sane.
“Dad, make sure to call her that when she walks in,” Jenny said sarcastically.
“Yeah, say ‘nice to meet you Dr. Bozakia,’” I add, making a squeezing gesture with both hands in the air, “honk honk!”
The three of us project inappropriate bursts of laughter outside the confines of Examining Room A—piercing levity through the seriousness of the clinical setting.
“We better quit before we get kicked out of here,” Dad announces between gasps.

Nearly an hour passes with no Dr. Boobies and we are all growing restless. My father has focused his attentions on the ceiling, panning up as if he were watching a bird.
“You okay Dad?”
“There seems to be a window open.”
“It’s just the air conditioner. For some reason the leave it on in the middle of November.” I remove my raccoon scarf and place it around his neck.
“Oooooooo,” he purred, eyes wide. He pulled at the tiny hairs grazing his chin in delight. “Feels nice!”
I fastened it around his neck and sat back down. He twirled the pelt around his neck several times and continued to Ooooo.
I reach for my camera. These days photo ops were few and far between. Especially now since he’s lost the ability to smile into the lens. So we shoot candid moments caught on the fly—regardless of uninspiring backdrops we snap away: The lunch table at Independence Village, the interior of my rental car, the examining room at the doctor’s office. Each picture is impromptu, encapsulating shreds of happiness. His spirit plays hide-and-seek with us at the most random times. Dad is unexpectedly witty and we do all that we can to immortalize him.
He stops twirling the pelt around his neck and a look of concern spreads across his face.
“Do you want me to take it off Dad?”
“No…but seriously tell me,” he begins, his voice thick with worry.
“Do I look gay?”
----------

The dreaded mini-mental exam.
I knew this was coming and I knew Dad would fail. The question was, how badly since the last time? How much had he declined, mentally, in the past six months? I wanted to protect him, to whisper the answers from across the room. This could have worked because he kept focused in my direction the whole time. But unfortunately, he was fixated on the top of my head rather than my face. Either that or he was staring at the water lilies of the faux Monet. Nevertheless he was looking in my direction but I know he couldn’t see me. Our efforts to cheat on the mini-mental exam would be in vain. So instead I just sat there, telepathically beaming the answers to him, which didn’t work out so well.

“I’m going to name three objects, “Dr. Bozoki began. “First repeat them after me, then hold on to them because I am going to ask you to recall them later.”
“Uh-oh.” Dad replied, anticipating failure.
“Just repeat after me: Apple. Table. Penny.”
Silence.
“Just repeat the words,” the doctor reminded. “Apple…Table…Penny.”
“Oh. I’m supposed to say something?
“Yes. Repeat the three words I just said.”
“Oh. Okay. Table?…Able?….I mean Apple…Table…Penny?”
“Good. What year is it?”
“Oh God.” Dad smiled to himself in embarrassment. “I always get this one wrong.”
Dr. Bozoki waited in silence, focused on her clipboard.
“Nineteen...fifty…eight?”
Jenny and I winced at each other from across the examining room.
“Now what are the three items I asked you to remember?”
“Oh geeze…”
Less than two minutes passed and the items had already faded into the quagmire of his mind. The seconds slipped by painfully.
“I’ll give you a hint, the first is a fruit, the second is furniture, and the third is a coin.”
“Pear, dime, blonde.”
The doctor separated my Dad’s responses with neutral OKs. Meanwhile I was mentally calculating his score--Cringing every time he got the answers wrong. Dad answered most questions with uncertain, yet rationalized guesses. Deductive reasoning skills were clearly damaged but still in better shape than his practically non-existent short-term memory.
“What season is it?”
“Well…it’s snowing outside….And we are heading into fall…I mean winter… It’s winter!”
“OK. What month is it?”
“December.” He was close; it was the end of November, partial credit for that one.
“What day of the week is it?”
“Um….Wednesday?
A middle of the week guess made sense. But it was Monday.
“Where are we?”
“In a doctor’s office.”
I smiled at Jenny and mouthed “Yay.” One answer 100% right.
“What is the name of the building we are in?
Dad scanned the room for clues--details, anything to make sense of his surroundings.
“We are in some sort of…complex? Like a building? With offices. An office building!”
“Where is it located?”
MSU, MSU, MSU, I mentally beamed to him. If anything he’ll remember MSU. We went to college here, he went to college here. This campus was our playground. Now, we bring him here to jolt his memory back to happier times. Please know this answer. Please remember.
“The University?”
“Yay Dad! Go green!” just flew out of my mouth although I wanted to cry. I didn’t care if he got all of the other answers wrong. He remembered us today, and he still held strong to the memory of so many happy moments we shared growing up on campus. Hold on to the important things Dad. Please stay with us here. Don’t let this go. If you let this go I don’t know how I’ll be able to cope…
“The University.” He said confidently.
“Michigan. State. University!”

Back in the car on the way home I tuned my Ipod to the Beatles and sang Hey Jude at the top of my lungs, hoping Dad would chime in and forget what had just happened in the examining room. But it didn’t work.
“I think I failed that one.”
“You don’t get graded Dad. The test is meant to assess the stages of your PCA.”
“I thought I had Posterior Cortical Atrophy?”
“You do.”
“But why did she say it was a cognitive thing?”
“Because it’s affecting the way your mind works.”
“But I thought there was something was wrong with my posterior…Can somebody please explain to me…in a clear way…what the hell is going on?”
The thing was, we had explained this to him. We had explained it a thousand times and he used to understand. Back in the day he used to accept it. But now he forgets that he has been told and he proceeds to rip the Band Aid off a wound that never heals--forcing us to break the news each time we finish a doctor’s appointment. And with every surprised response, my heart is newly broken.

The Taboo Moment

2008-08-26T04:02:00.000-07:00

As always, my trip felt too short. There was never enough time to get it all done. There were always so many requests, so many adjustments, so many to-dos that I never left my father and returned to New York feeling a sense off accomplishment. So I adopted his habit of keeping lists on his behalf--And they never seemed to get any shorter.

I had 45 minutes to say goodbye to dad before heading to the airport.
Dad’s last request before I left was to help him with “the voices.” Apparently, the neighbors next door were keeping him awake at night with their mumbling. At this point I never thought to question what dad had seen or heard. I still took everything seriously. Taking great care to ensure each time before I flew home, dad was left in good spirits, as comfortable as possible, with all adjustments made, and all items crossed off the list.
But this current request was a bit more complicated than the others.

I racked my brain for a useful quick fix. One that would keep him from being bothered by his mumbling neighbors in enough time to get me back to New York on the last flight out. I was desperate for a 30-minute solution. I could pass the buck to the ladies at the front desk, but I knew once I walked out that door the dilemma would be dropped. One of those Zen alarm clocks could do the trick, drowning out their ramblings with crashing waves or thunderstorms--But it was nearly 7PM, Wallgreens was a 10 minute drive, and my chances of making it before closing were slim. I considered the direct approach; just knocking on the door and talking to the neighbors myself…but there was no way to accomplish a polite sit down in 30 minutes or less. Stating my father’s case then running out of the room to catch a plane would be rude. The least I could do was offer them a box of Russell Stover’s or something, which again required Walgreen’s. A benevolent quest that time, unfortunately, did not permit.

I had 28 minutes to come up with an answer and I could feel my anxiety mounting. Dad stood there in the corner staring at me blankly, patiently waiting for the light bulb to flash above my head, totally unaffected by my quandary. He lingered, anticipating a cue to respond…I considered the ridiculousness of my own anxiety as I wondered to myself if he even remembered complaining about the neighbors in the first place.
Then the semi-rational idea hit me:

“Ok, dad here’s what we’ll do…We’ll move your bed to the opposite side of the room so you won’t hear your neighbors so much. We can put it there (roughly 36 inches away from where it currently stood) and then you’ll be furthest away from the wall that separates you. Plus, you’ll be facing the bathroom so you won’t get lost at night when you have to go. Look, from this view, you can even see your night light!”
I vivaciously gesticulated my plan from across his bedroom. It wasn’t the most elegant solution, and certainly not the most efficient, but it was the best I could do in 28 minutes.

Dad stood peacefully to my opposite across the room. I sensed his attempt to follow my convoluted logic and respond accordingly, but the best he could do was smile half heartedly, uncertain as to what to do next. I doubt he fully comprehended my plan, but as usual he went along. I often wondered if it was the meds or the Alzheimer’s that kept him so compliant, but these days no matter how uncertain he was of anything, his default response was always “OK.”

“OK honey, that sounds great.”
He continued to stand there, staring at the bed, a subliminal attempt to lend a hand. I’m sure he wanted to help, he just didn’t know how.
“It’s fine dad," I said. "Just go in the other room, I can move it myself.”
He briefly drifted out of his trance, said, “OK,” and wandered into the living room.

It seemed like an easy enough task. His bed was small beneath the disheveled sheets. Just a thin narrow mattress, box spring, frame and wheels. He had no headboard, no footboard, no extra padding to comfort him. Just an old, thin mattress and rickety box springs, basic and spartan. The littleness of it made me sad. When I was a child I remember my dad’s bed being gigantic, a King size. But it never was, it was always a full. The only thing that changed about his bed since then was my perspective, and looking at it now, it seemed so feeble and lonely. A few years back I gave my father a set of luxury sheets, down pillows and a high-thread count duvet. But he never took it out of the package. He considered it too nice to sleep on. And lying before me now was the bed he laid on for the past 25 years—Just an old mattress and box springs with a set of low thread-count sheets on wheels. It killed me that throughout his whole life, my father never allowed himself to feel comforted, not even in sleeping.

I grabbed the left corner of his mattress and began turning the bed clockwise. Then I repeated the same with the right. My plan was to maneuver his bed into a 90-degree angle then shove it into the opposite corner of the room. I had 26 minutes to complete my mission. But as I reached 45 degrees I noticed something was wrong. The left side of the bed was no longer moving. I shoved harder and felt an unrelenting pull on the carpet. Something was stuck, hard. I peered underneath to find one of the wheels was completely missing from the frame. Dad had actually been sleeping on a lopsided bed for God knows how long and never knew the wiser. I glanced at my watch, 19 minutes and counting….

Inch by painstaking inch I tried twisting and turning each corner but without the forth wheel missing from the frame this was a mere impossibility. I began to sweat. The metal continued to grind further into the thickness of the carpet. Suddenly something gave and half of his bed came flying two feet out from under me. The frame slid completely off-track and was now totally unhinged; the front and back portions of his bed fully separated. God damn it, I cursed under my breath, taking care he wouldn’t hear me in the next room. I could feel my blouse sticking to my back. 12 minutes.

I dropped half the bed and reached to open his window for relief--Nothing. I pulled the metal lip of the window harder this time, irritation building with every bead of perspiration that dripped from my forehead onto the clamped sill. Locked. Of course. GOD DAMN IT! Some sort of senior-proofing fixture had been installed to keep disgruntled residents from hurling themselves out the window, which was a thought I was seriously considering at the time.

Air conditioner. I fiddled with the digital display, pressing the down arrow in a mad frenzy with no luck. It was frozen at 78 degrees. I tried unplugging it then plugging it back in. I slammed the display pad with my sweaty fist. Nothing. WHAT THE HELL? If I couldn’t figure this stupid thing out, how the hell could my dad? My blouse was soaked, my hands were slippery, and my watch kept ticking. SHIT! I’m totally not going to make it...
8 minutes.

I looked behind me at my father’s broken bed, cursing myself for even going there. He probably doesn’t even remember that people even live next door, and I’ve broken his poor little bed and messed up his room--His un-matching sheets now strewn across the floor, the skinny mattress bending at the center. It looked like an earthquake hit and it was all my fault. I was supposed to make it better and I made it worse and to top it off, I had to leave him. I had to fly back to New York in less than 6 minutes and leave him with his messy broken life.

I could feel the guilt descending like a storm cloud on, then the tears,
No--He cannot see me like this! Why the hell did I blow off Walgreens? All of this could have been avoided had I just picked up the nature sounds alarm clock.

But I didn’t. And now I only have 5 minutes to clean up the ridiculous mess I created and do right by dad. I had to cross this one last thing off the list. With one final surge I lifted the mattress with one arm and strained to connect the metal fame with the other. It was a ludicrous, senseless attempt. Within two seconds I was splayed on the floor: defeated, bed: in shambles. “SHIT!” I said too loudly this time. I was as broken as his bed--Beatened, flattened. I’d lost it. Despite my valiant attempt to stifle the sobs as the tears came streaming, I heard his voice beckoning…

“Honey?”

My dad was in the doorway. I can only imagine his alarm as he surveyed his disassembled bedroom. I didn’t answer. I sat on the floor with my back to him, frozen. He couldn’t see me breakdown like this. This was a taboo moment. He could never know that anything I did for him hurt me. He could never know things were tiring or burdensome or heart wrenching like this. He was supposed to let me take care of things like a good daughter would; he was never supposed to know this was killing me.

“Honey?” He asked louder this time, his voice thick with concern, which made me cry even harder.

"It’s Ok dad," I said, trying my best to sound normal, "I’m just sort of stressed out right now and the bed is a litter heavier than I thought it would be but…it’s OK. Really. I can take care of it just…go back in the other room, OK?”

But he didn’t say OK this time.

“Honey? Are you hurt?”
It was as if he didn’t hear a word I said…He started towards me.

“No dad. It’s OK--SERIOUSLY.” I said louder this time. As if the volume of my voice would stop him.

But it was too late and he was directly behind me, hand on my shoulder, much too close for me to stave him off words, no matter how loud or seemingly authoritative.
I had no choice. I had to look up, to face him in all my broken-ness, bleary eyed and defeated, like a little girl who fell off her bike and skinned her knee.
I turned around to his embrace and lost control, the tears now coming hard and fast. We were both crying now and for a fleeting moment I succumbed to being his little girl again, allowing him to comfort and protect me one last time.

“Honey I’m so sorry your hurt.” He said--and I was. I was more hurt now than I had ever been, but not in a physical way. It was the first time I’d seen my father cry. Thankfully, he was convinced I’d somehow injured myself while moving his bed and his attempts to soothe me were just the same as if I’d had fallen off my bike and skinned my knee. My sadness however, was inspired for an entirely different reason. My sadness for him was far more permanent. We stood there crying in his broken bedroom for what seemed like an eternity. I held onto him tightly and sobbed in his ear, “Dad I’m so sorry,” I said between sobs. “I didn’t want you to see me like this.”

“It’s OK honey...” he repeated softly between sobs, “...It’s OK.”

It was at that point our roles reversed. Suddenly I was the parent and he was the child and we cried because we didn’t want to let go of the relationship as it was, and as it had been for the past 34 years.

I missed my plane that night. I never told my father, I just checked into the Marriott down the street and collapsed. I sat the anonymity of the hotel room and broke down where no one could see. I pondered that taboo moment when my father caught me crying, totally disarmed and childlike. I played the scene over and over in my mind, the two of us hugging and crying, clinging to that delicate bond we shared as father and daughter--So unready to let go.

Our roles were inevitably reversing and neither of us could halt the progression. We said our goodbyes that night. The exchange was a final farewell to the familial roles we once knew. It was the most melancholy yet poignant milestone we’d ever shared.

The next morning my mother called, wondering if I was all right.
Unaware of how much she knew, I played dumb: “What do you mean?”
Your father told me you were hurt. He said you pulled a muscle trying to move his bed last night, and you left in a lot of pain….”

I exhaled. Thank God that’s how he remembers it. Thank God his Alzheimer’s had erased the painful truth of what really happened that night. For the first time, I realized that through the sadness of the situation, there were moments of relief such as this. That Alzheimer’s had this unique was of forgiving and returning the mind back to innocence, wiping it clear of the pain--A most ironic consolation prize.

I realized that day my father’s disease could be dealt with in two ways: One way, the way I had been dealing for the past two years, was to dwell on the problems, to the tasks at hand, to the quick fixes, and the chores, and the attempts to incessantly aid the symptoms and handicaps--The things to-do lists are made of. I thought if I could somehow make his life easier, it would relieve me of some of the guilt.
But the chores never end and the lists just see to multiply, there's never enough that can be “done” to cater to the handicaps. More often than not, these multiplying problems that weighed most heavily on my mind, to dad, are as permanent as footprints in the sand.

After that day I learned to view the time I spent with my father in a different light. To weigh our moments together based more upon quality rather than quantity. This was very difficult for me at first. At the beginning, I didn’t want to view my father in a reversed role. Maybe, I secretly wished he would remain dad, just as he always had, but with a few handicaps--With things that could be fixed. But after a while, I began to understand the lists will just keep growing, and there will always be one more thing to cross off in not enough time to do so--Life is far too short to keep up.

It takes courage to face the truth and accept Dad as he is, rather than as someone he used to be, but with caveats. Only after I learned to acknowledge his PCA completely, with all of its misgivings, did I learned to relax and enjoy my time with him not as much in the doing, but in the being.

The Mirror

2008-08-15T21:04:00.000-07:00

(Michigan, the day I left)

I send a report to my sisters after each visit with him. It's become my routine. Beyond keeping us on the same page I do it to check in with myself--to exhale. Checking in makes me feel better. Like I've accomplished something tangible. Even if it's just sending an email to say, I did it, I made it through another visit without losing it. Sometimes it doesn't seem real until I have it down in words (more notes to self). God knows there's little time to breathe when I'm with him and we are going through our mantra of "what happens next?" Between the walks, the coffees, the beers and the ducks there is little downtime. I keep him busy so there is no room for commissary. Needless to say every time I say goodbye no matter how sunny or optimistic the farewell, I exit the circular hallways of his nursing home bleary-eyed. The residents sometimes catch me and there's an awkward moment. Maybe they see me as a regular. A prodigal daughter. I never let dad see this side of me anymore--and I guess that's the moral of this post.

Although it never feels like enough time, we got a lot accomplished. Curiously, it was one of the best trips I've had with dad a while. I preface all this by saying he's definitely become more a more tentative walker and yes, certain things like getting into a car frontwards and sitting in mom's 2-feet-off-the-ground "easy"chair are still struggles, but for the most part dad was enthusiastic, clear-headed, and his sense of humor was in full swing.

My first day there I took dad to see Dr. E. He had his 6-month check up and all vitals were normal. After the exam dad followed up by pressing his whistle and asking the nurse to dance, so I guess you could say he’s officially in good health.

The next day we whisked dad off to the botanical gardens on campus (thank you Wes). There were about 20 steps to brave but they were well worth it. The gardens were lush and quiet, shady and cool, and dad could even make out certain bright colored flowers. I had him touch the leaves and guess what trees or vegetable plants we came across. We sat on a bench outside the koi pond and dad would oooh and ahhh every time the breeze would blow. We sat there for a long while and enjoyed the peace.

(The Gardens)

Later we took dad to the Cap Café, listened to some oldies and sang along. He was alert, upbeat, and laughing a lot. We joined mom for dinner and ate hamburgers and corn on the cob. When I warned Wes that mom was cooking them on the electric grill inside the garage, dad offered his wit...
“Are we gonna have hamburgers that taste like tires?”

The next day after lunch we took dad on a drive before we hit campus for our daily walk. I stayed true to your recommendations about listening to the Beatles, and put on a mix CD I had made especially for him. It consisted mainly of everything else: Pink Floyd, The Rolling Stones, Fleetwood Mac, Elton John, and even some Harry Chapin. Dad enjoyed playing the game of “guess the band” and when Gravy Train came on, he sang at the top of his lungs and danced the best he could under his seatbelt. When the song ended he announced: “Man that was great stuff--Maybe they can play that at my funeral!”

(Quacking and laughing)

We sat by the river and witnessed a slew of little kids feeding the ducks (or shall I say--pelting them with clumps of bread). Dad enjoyed listening to snippets of their giggling. The weather was cool and we spent a good amount of time perched on a bench talking about the good ol’ days when he used to bring us to the same spot. I think it was three times that he mentioned how much he loved hearing the big band practicing on football Saturdays, and how much fun he thought it would be for Devin and Ben to witness the same. We enjoyed just listening to the river rushing by and taking in the surroundings by sound.

The next day I had the new caregivers meet us in dad's room so we could spend some time getting to know each other and dad would have the opportunity to ask them questions. I said it was up to him to give the final nod and he seemed receptive to the responsibility. When asked him to give a little background on himself, dad started off by describing the time his parents came over from Greece and ended only after detailing a 5-minute soliloquy of his life! He covered high school, college, the military, GM and when we were born. I think I can speak for everyone when I say we were all blown away by how much he could retain from his past, and recite back to us in such vivid detail.
(What sticks)

Later we took another short walk on the trail by his place. He had so much energy that day and I wanted to keep the momentum going. We walked the trail for about 15 minutes before I realized he was actually walking so fast I could barely keep up. He leans "more forward," he says, and now his feet move much faster to keep up. We talked about mom, their relationship and how things have evolved. At one point he looked over and said, “Could somebody please tell me why we got married in the first place?!?”

(What needs reminding)

Later he admitted how thankful he was that she was around, and how lucky he was that she was so interested in taking him on walks.

We went back to mom’s for a beer; she fed him a potpourri of whatever was left in her fridge covered with cheese. To catch up on more one-on-one time with mom, we promised to take her out to dinner after dad went to bed. As we were walking back to his room dad looked at me and asked, “Is that time? You know, when somebody comes by to tuck me in?”

When we returned to his place the next morning, we found him sleeping soundly in a sweater meant ice-fishing in Alaska. When he asked me when I was leaving and I told him tomorrow he said, “Oh… I’m getting sad already!” I remembered Jen’s advice on changing the channel and I immediately snapped him out of it with “…But I’m here now and we’re going to have fun. So no getting sad allowed!” Just like that the worried look disappeared to a smile and he said affirmed “OK!” Changing the channel is key.

All in all it was a great trip. We laughed a lot and got a lot accomplished to improve things moving forward. Dad needs more assistance walking for sure, but I did notice once his confidence was restored he seemed to be re-energized and moved along at a surprisingly strong clip. I really think it’s his vision more than anything that’s causing the stress. And as we all know the stress exacerbates the handicaps. But hopefully with the help of the two caregivers and new Neurologist, we can at least get a better handle on things.

One things clear, dad’s mood is like a mirror. I noticed his disposition would continuously reflect mine. If I was pensive, he was pensive, if I was goofy, he was goofy, and if I was sad he was sad. I feel like the PCA has turned dad somewhat psychic. Knowing this, I try my best effort to keep it light and fun at all times, and thankfully, and he seems to respond in kind.

(A good day)

I know this was a long one but it was a good trip and I wanted you guys to be a part of the positive experience. I realize when I am away from him I spend so much time worrying and getting down on myself over the situation. As you both know, the guilt can sometimes be worse than the truth of what’s happening in real time. But I feel good reporting this time, things were truly enjoyable. And there are still many opportunities for us to have these moments with dad. And even though he may forget them, at least we’ll have the happy moments to look back on.

Love you,
Teen

Novelist Terry Pratchett funds Alzheimer's study.

2008-08-14T11:32:00.000-07:00

From BBC News
Best-selling fantasy author Terry Pratchett is to donate $1m for research into Alzheimer's disease.

The creator of the Discworld series was diagnosed with a rare early-onset form of the disease in December.

Pratchett, 59, announced the pledge of about £494,000 at the Alzheimer's Research Trust annual conference.

Telling leading dementia specialists of his determination to find a cure, he said: "I intend to scream and harangue while there is time."

Personally, I'd eat the arse out of a dead mole if it offered a fighting chance
Terry Pratchett

There are 15,000 people in the UK with early-onset dementia, which strikes under the age of 65 years.

Mr Pratchett has a rare form of the disease called posterior cortical atrophy, in which areas at the back of the brain begin to shrink and shrivel.

He says he is starting to notice its effect on him.

"I've given up my driving liscence because I didn't feel confident driving. And if I've got something inside out, it's a little bit puzzling getting it the right way round again."

He added: "The curious thing is that writing goes on, although the typing doesn't."

Mr Pratchett is paying for the Alzheimer's drug Aricept because the NHS says he is too young to get it for free.

Lack of funds

The author told the conference he is prepared to go to extreme lengths in order to beat the disease.

He said: "Personally, I'd eat the arse out of a dead mole if it offered a fighting chance.

"I am, along with many others, scrabbling to stay ahead long enough to be there when the cure comes along.

"Say it will be soon - there's nearly as many of us as there are cancer sufferers, and it looks as if the number of people with dementia will double within a generation.

"In most cases, alongside the sufferer you will find a spouse suffering as much.

"It is a shock to find out that funding for Alzheimer's research is just 3% of that to find cancer cures."

In total, an estimated 700,000 people in the UK have Alzheimer's disease.

However, the Alzheimer's Research Trust estimates that just £11 per patient is spent annually on research into the disease - compared with £289 for each cancer patient.

Rebecca Wood, chief executive of the Alzheimer's Research Trust, said the trust currently had to turn down two out of every three research projects due to lack of funds.

She said: "Whilst we were deeply saddened to learn of Mr Pratchett's diagnosis, we are delighted that he has chosen to speak out about his experiences with Alzheimer's disease, to raise awareness about its impact and the desperate need for more research.

"Research is the only way to beat this disease and help people like Terry - to prevent them losing their thinking skills and keep them doing the things they love."

My Father's Keepers

2008-03-20T04:55:00.000-07:00

I rushed into the restaurant breathless and made a b-line for the ladies room hoping to get by unnoticed. This was less of an opportunity to relieve myself and more of a chance to check myself out. These lunches were important. They were instances that called for extreme apropos: To be dressed properly, to be prompt, and to address the burning issue that had grown like a tidal wave in our lives: My father’s steadfast progression into Alzheimer’s Disease.

I looked too tan. My dangly earrings were too bohemian. I looked all together too relaxed and it bothered me. The last impression I wanted to make was that of a jet-setter fresh off the shores of East Hampton. Especially while my dad was stuck back in Michigan in that stale little box they call his nursing home.

On the outside I may have appeared the picture of R&R but inside I was a guttural mess. Though revealing my unkempt side was never my style, be it physically or emotionally. In the past I'd relied on this well-monitored self composure to mask whatever was really bugging me but when it came to lunch with my father's keepers, keeping up appearances seemed ridiculously shallow. What was the appropriate look for a RESPONSIBLE TAKE CHARGE WOMAN when what I really felt like was a little girl without a plan?

I padded down my highlights and yanked at the sides of my blue sundress in dismay. Why didn’t I just wear black? This was Manhattan after all. 90% of my closet was black.

I approached them from behind, relieved to find their appetizers freshly delivered. My guilt faded a tad when I realized they hadn't allowed my tardiness to dampen their fine dining experience. I was always a bit self-conscious around Frank and Eve, my father’s best friends, who routinely met me for lunch in the city to discuss the progression of his AD and just what the hell I was planning to do about it.

“It’s been difficult..." I would begin."...He constantly urges us to hold off...He says he isn’t ready...The thought of re-adjusting to a new place sends him over the edge...”

Frank and Eve are my father’s transition friends. Meaning, they stayed close to him before, during, and after the Alzheimer’s went from bad to worse. They knew him as the old John who joined them as a third Musketeer, and they’ve stuck with him as the new more unfamiliar John. The one that lags a few steps behind. Still they remain dedicated to him and visit him weekly. They do their best to carry on conversations that have grown progressively one-sided as he slowly begins to forget their names and fun times they'd shared for the past two decades.

They were an odd couple. Beyond their down-to-earthiness and extraordinary intelligence they were polar opposites. Maybe that’s why my father enjoyed their company so much--Dad liked stirring up the difference between the two of them. He enjoyed the banter.

Frank was thin and speedy, with an overly-keen sense of his surroundings and darting eyes easily distracted. He was a human radar constantly tuning into his environment. I used to make fun of him for being the oldest man alive with ADD. Never short on wit or humor, Frank was on stage always and got a kick out of entertaining us with his Brooklyn-based sarcasm. His quippy demeanor was a sharp contrast to my father’s steadfast seriousness. But these days the differences between the two were growing inconvenient and uncomfortable. Frank couldn’t concentrate or ponder on a subject too long before tiring of it and eagerly moving on. Dad on the other hand struggled to stay on topic. Often needing reminding of who said what, and “what exactly was it that we were talking about in the first place?” He tried his best but extended conversations seemed to fail him. His responses started off strong, but somehow seemed to fade into the uncertainty of an Alzheimer-y void.

“It really pisses me off!” Frank would declare.
I wasn’t sure if he meant Dad’s deteriorating mental state, or the fact that it could happen to him one day. Of course I forgave him for this. I knew at the end of the day he just really missed his old friend. I empathized. I really missed my old dad.

"There’s never going to be a good time to move your dad..." Eve would remind me in her trademark gentle tone. Then her voice would trail off as if she were leaving me space to offer a solution. I allowed the gap to widen into uncomfortable silence—as the solution never came.

Eve was a tall, Nordic beauty with one brown eye and one blue. She spoke softly and deliberately. Peacefully disarming, graceful and quiet. She was everything Frank was not and I’m sure that’s why they got along so well. Eve was the perfect confidante and my father trusted her wholeheartedly. When the blindness took over he trusted her to open his mail and read it to him financial statements and all. Being granted that privilege speaks volumes of her character. Dad looked to Eve for advice when the AD became too all-encompassing to disguise and he no longer trusted his own mind.

At one time they were the Three Musketeers, and dad maintained strong friendships to both of them separately as well as a couple. He enjoyed Frank for his incredible wit and battled him over politics for fun. Dad always appreciated a good argument and Frank was the type who wouldn’t back down. He poked fun of Dad and got away with it because he was his closest friend. Dad endearingly referred to Frank as The Professor. Beyond the fact he taught physics at the University, I think dad held fast to this nickname because he truly admired Frank’s intelligence. Debating seemed a common pastime between the two, and he challenged my father’s conventional thinking in a way most people wouldn’t dare. Dad was a stealth debater in his day. He lived for the contest. Back in the day, Dad thrived on ideas to fight for.

But these days the relationship is growing strained. As the Three Musketeers sit down to visit the conversations are growing increasingly one-sided. Eve, the more patient; more genteel of the two does most the talking. Dad’s passion to debate has now morphed into gentle acquiescence. A man who once held rock-solid to his convictions now just goes with the flow and tries to agree in all the right places. The common bond that he and Frank shared has faded away along his unyielding inspiration to challenge him just because. Now Dad dismisses Frank’s personality as too “all over the place,” and he no longer refers to him endearingly as The Professor. Sadly, he doesn’t refer to him much at all. I know this hurts Frank as he witnesses his best friend dissipating both in mind and spirit, as they no longer have anything in common but history. What’s worse is that it’s a history only remembered by one.

During these lunches Frank and Eve would make carefully composed suggestions and although I took their advice to heart it’s much easier said than done. In all other aspects of my life I’ve been a go-getter. But in my father’s case the big decisions were far more complex. They involved negotiating four separate opinions: My sisters, my father’s and my own. And at this point none of us could come to a unanimous decision. So for the past 16 months Dad struggled to get by alone and totally dependent at Independence Village, while my family remained in a stalemate over whether or not to move him.

It doesn’t help that Dad changes opinion of the place daily. Last week he complained he was surrounded by old people whose eating habits disgusted him, but the week after he was spotted strolling arm in arm with an attractive female resident and rumor has it, she’s got a crush on him. His stance on the place would drift from repulsion to contentment depending on the day, and the daughter. After a while we figured his reports of Independence Village were completely subjective, and I restrained my knee-jerk reaction to call my sisters in a panic and report his latest complaint. The following day he would typically forget anything bothered him at all. Moreover, he’d go on to recount the pontifications his Men’s Club shared over The Davinci Code, and how they were covertly devising a plan to overthrow the administrators.

Half of me knows there’s no ideal time to pull the trigger. The other half of me whispers wait till he's too far gone to know better. But until we can all put a stake in the ground together we’re left spinning on this merry-go-round of guilt and uncertainty...pondering, mulling, and fighting tooth and nail over our respective positions, over what we feel is the best option for Dad. As if each of us has their own psychic bond with him and believes beyond a shadow of a doubt, that our connection is the strongest (we each selfishly believe this).

It amazes me to think just 18 months ago my father was lucid enough to declare the move into a nursing home. It stuns me to think less than two years ago he was driving his car 30 miles a day to and from his girlfriend’s house. Today, he can’t even sit himself inside the front seat of a car without assistance. Instinctively he heads to the driver’s side. Every time I say the same thing, “its cool dad, this time I’ll drive.” And when he comes around to the passenger's side he laughs at himself shaking his head, as if this were our first drill at whose driving who. Now when he reaches for the door handle it turns into another woeful attempt to sit inside the car, backwards.

Post lunch, tea time was usually spent discussing the follow up back in the day, I would obediently carve out the key phrases: “meals on wheels,” “day-glow bulbs,” “talking remote,” etc. But these days my dad’s condition was beyond handy living aids. Follow-up notes turned into to specific agendas that I entered into my Blackberry punctuated by alarms and due dates:

1. Interview top four nursing homes on the West Coast.
2. Sort out long-term health insurance.
3. De-archive Advanced Directives and submit Power of Attorney.

I still see Frank and Steve for lunch every 6 weeks. They still ask me "What next?" and I still admit I’m not 100% sure. And I still try (probably too hard) to get my point across. To state my case and explain although I’m here and he’s there I’m still very much his daughter--The same responsible woman he raised in his likeness that’s trying her best to do the right thing. I admit there are times when I feel like that uncertain child not yet ready to let go of her dad, but I take comfort in knowing it’s Frank and Eve who empathize.

The Luxury of Breathing

2008-02-03T12:11:00.000-08:00

I'm aware this is not what you signed up for. I'm totally with you and I completely apologize.   I'm sorry when this avalanche called my daily routine caved in; you were knocked down for holding my hand.

You may be right; I have been neglectful, selfish with my time, a bad girlfriend. I promise next time to be more considerate. But right now the world has raped and ravaged and left me for the flies, and frankly, I'm too tired for self-preservation.

So if I leave you angry and hungry and yearning for more, I apologize in advance.  It's just that so much has sucked the marrow from my bones already--I'm hollowed. And I'm sorry.  But at this point I don't have enough leftover for someone to take another piece, then tell me it’s my fault for not saving the biggest slice cause I'm fucking crumbs right now.

Your girl that's got it under control, the one that gets shit done, and makes it all right and gives and gives and gives--is suddenly spent.  And the view of the future from beneath this burden is clearly uncertain. Somehow all those happy endings once relied upon have crashed and burned and I'm left standing in the ashes of the aftermath-- of futures fallen in mid-flight.

But I do care. And you are special. And I do need you.  It's just that the world is really coming down on me right now and I can only give so much. You call it selfish but I call it human. And maybe, just maybe, enjoying this day off was not in the cards. But there is indeed, a method to this madness.  Whether or not you choose to accept it; there is a context to this scenario. Just please bare with me--Just grab hold and hang on tight because if you let go right now, it will surely be curtains for me.

Please understand, this is not an attempt to play on your sympathies--But admitting to feeling a bit crowded is putting it mildly.  I just feel the need to go there, to justify myself.  See, there are these few thousand distractions that keep pushing my boundaries inches from a breaking point of which, I assure you, is not a becoming side of my shining personality.  I know my absence is hard to take and my silences keep your heart unhinged, maybe even teetering on the brink of un-welcomed vulnerability, but this is not my intention.  And pardon me if I seem a bit preoccupied but I'm juggling daggers here. No--this is not an illusion.

On the surface the waters are placid. Occasional I’ll allow for a ripple to rise.
But these tiny whirlpools are really tidal waves carefully repressed.  Beneath these cool waters the undertow is deadly...and if I'm not careful I'll get sucked below the surface and dragged across the coral with no one to know the wiser. I'm drowning here but never to the point of complete relinquishment. That resiliency my father instilled resuscitates me just in time to catch my breath and prepare me for the next tidal wave.  After all, someone needs to follow in his footsteps.

Then there's this separate issue of single-handedly overseeing thirty-two employees on a shoestring budget that spreads even my talents thinner than cling wrap. And if acting as mother, teacher, cheerleader, dealmaker, newsbreaker, negotiator, guru and translator to these people weren’t not enough, I as the ultimate mediator, must translate their stresses to my phantom boss. The one who is barely there. That only exists in figments between "where's the money?" and smoke breaks. And back at the ranch the phone's ringing off the hook, my inbox is loaded and since and of this very moment I have 37 unread messages to attend to. Low and behold, a text from you: "you alive?" I laugh to myself. "GOOD QUESTION."  Then the midday madness returns and I barely have time look up much less indulge in the rubbery slice of coagulated cheese called lunch that grows cold between incessant requests for unnecessary help at my desk. The children are restless, pulling at my skirt, interrupting the conference call between father, banker, lawyer and doctor that will address my father's soon to be forgotten future. These days we need two sets of ears.

So the daughter with her head screwed on straight is appointed the task of mediating his lifesavings and must attend to the fact that my little sister needs 35K for her new house wired to California by tomorrow, but dad simply can't understand why? Dad’s not against it. Really. He just doesn't remember ever saying yes. So he must be convinced, yet again, that this is not a scam, and Jenny is no longer a hippie with dreadlocks, but indeed, has prepared like a good Greek daughter and like me, knows what she is doing...

We all know that Posterior Cortical Atrophy can manifest symptoms alarmingly similar to this other little problem we call Alzheimer's Disease, and on that note, he's asking whatever happened to the Advanced Directives--you know, those convenient little death directions you give your doctor while you're still living and coherent enough to instruct your loved ones how NOT keep your body alive if your brain is dead. Yes it is I, the chosen one, that’s been granted the honors. Leave it to the daughter with her head screwed on straight with the responsibility of assessing whether or not my father's life is worth living because there WILL be a time, experts claim,
that he’ll forget how to breathe.

And it bares repeating I'm not looking for sympathy here--I mean, it would all be much worse if Dad were coherent enough to comprehend the reality of the situation: That the lifesavings he sacrificed for the sake of his offspring is dwindling along with his memory of what happened about 30 seconds ago... As his favorite phrase "Wait, what were we just talking about?" becomes
a mantra. And we all laugh and so does he, but inside we are all slowly dying.

Thankfully Dad has it slightly better because he doesn't recall the pain of forgetting. But the irony strikes those less fortunate like a boomerang. Blind-siding us. The most dire reality being no matter how meticulously one plans, no matter how carefully one prepares, insures, shelters, scrimps, saves and sacrifices--futures have this way of falling in mid-flight. They crash and burn and spare no survivors. And that utopian freedom that supposedly exists in early retirement is exchanged for the confines of ones own limitations:  The inability to read...to recognize a face...to lace a shoe...to breathe.

No this was definitely not what we signed up for. This inevitable countdown that mounts like a tidal wave before us, promising that fateful day when Dad forgets who we are.  So for the sake of his three daughters, his reasons to be, he worries. Constantly. Then he passes his worry on to me, the daughter most like him: The one with her head screwed on straight. Even if he forgets who I am my mind will pick up where he left off, adopting this never-ending responsibility I couldn't shake if I tried. This is his blood working through me. Inevitably, the daughter he worked so hard to raise the right way, will assist in the plans he devised in advance. So when the time comes I’ll be prepared. Armed with the knowledge of exactly how, when, and in what circumstance, measures must be taken to end his very life.

So could we please move the conference call up to now, because in five minutes my boss will be back and he'll cast a silently disapproving glance and wonder why the hell I'm utilizing work time for my own personal pleasure. And he'll bid me his famous "enjoy your day off" with sarcastic intonation as he saunters out the door ending his day before most leave for lunch but I digress, because this dedication is to you, my love. This one is about us, and all the reasons why I may not be with you in spirit.

So here are my Advanced Directives: Find solace in this heartbeat. Let this be evidence, tangible proof; the ultimate assurance that I am with you. Even if my mind seems lost in a tidal wave of expectation and the undertow sucks me down and I'm left weathered and hollowed and shaken—Trust I may emerge a bit less idyllic, but no less your girl.  

All I need is your gentle reminder that life is something I can handle. That I'm strong, and wise, and good like that, and as always I’ll bounce back in my usual fashion. Deep I know these things. But also remember the strong woman that's got it all under control, is no less a daughter afraid of loosing her Dad. And on days like this, sometimes even the girl with her head screwed on straight needs a shoulder to cry on. To be reminded to breathe.  Because not everyone, my love,
has this luxury.

What Every Caregiver Must Know

2007-07-31T05:21:00.000-07:00

©Family Caregiver Alliance

Whether you have moved into the role of caregiver gradually or suddenly, you may feel alone, unprepared and overwhelmed by what is expected of you. These feelings, as well as other emotions—fear, sadness, anxiety, guilt, frustration and even anger—are normal, and may come and go throughout your time of providing care. Although it may not seem possible, along with challenges will come the unanticipated gifts of caregiving—forgiveness, compassion, courage—that can weave hardship into hope and healing.

Each caregiving family faces unique circumstances, but some general strategies can help you navigate the path ahead. As a traveler in new terrain, it is wise to educate yourself as best you can about the landscape and develop a plan accordingly, with the flexibility to accommodate changes along the way. Below are ten steps to help you set your course.

Step 1. Lay the foundation. Establishing a baseline of information lays the groundwork for makingcurrent and future care decisions. Talk with your loved one, family and friends: What was mom “nor-mally” like? How has she changed? How long has she been forgetting to take her medicine? When did she stop paying her bills? Answers to questions such as these help create a picture of what is going on and for how long. This basic information not only gives you a realistic view of the situation, but also provides an important foundation for professionals who may be called in to make a more formal assessment.

Step 2. Get a medical assessment and diagnosis. It’s very important for your loved one to get a com-prehensive medical exam from a qualified health care team that reviews both physical and mental health. Many medical conditions can cause dementia-like symptoms, such as depression and medication interactions. Often these conditions can be reversed if they are caught early enough. Additionally, new drug treatments for diseases such as Alzheimer’s and Park-inson’s diseases may be most effective in the early stages of the disease. A confirmed diagnosis is essen-tial in accurately determining treatment options, iden-tifying risks and planning for the future. Take your loved one to a memory disorder clinic, if one exists in your community, to get an accurate diagnosis.

Step 3. Educate yourself, your loved one and your family. Information is empowering. Talk to doctors, health and social service professionals, and people going through similar experiences. Read books and brochures. Do research at the library and on the Inter-net. Learn how the disease progresses, the level of care that will be needed, and what resources may be available to help. Keep a notebook and a file folder of information you collect that you can refer back to when needed. Knowledge will increase your confi-dence and may reduce the anxiety and fear that many of us feel in the face of the unknown. (See the FCA Fact Sheet on Community Care Options for more information about finding help in your community.)

Step 4. Determine your loved one’s needs. Care assessment tools include a variety of questionnaires and tests designed to determine the level of assis-tance someone needs and establishes their personal preferences for care (e.g., bathing in the morning rather than the afternoon). Each situation is different. While one person in the beginning stages of Alz-heimer’s may need assistance with grocery shopping and bill paying, another in later stages may have problems with dressing, eating and hygiene.

Assessments usually consider at least the following categories:

Personal Care: bathing, eating, dressing, toileting, grooming
Household Care: cooking, cleaning, laundry, shopping, finances
Health Care: medication management, physician's appointments, physical therapy
Emotional Care: companionship, meaningful activities, conversation
Supervision: oversight for safety at home and to prevent wandering

Some hospitals, Area Agencies on Aging (AAAs), city or county agencies, Caregiver Resource Centers, or other government or private organizations offer consultation and assessments specifically designed for older people (called geriatric or needs assess-ments) for little, if any, cost. Another option is hir-ing, for a fee, a geriatric care manager or licensed clinical social worker. (See Resources on page 6 for help in locating someone near you.) These profes-sionals can be helpful in guiding you to the best care in your area, advise you on community resources, assist in arranging for services, and provide you and your loved one with continuity and familiarity throughout the illness.

Step 5. Outline a care plan. Once your loved one has received a diagnosis and completed a needs assessment, it will be easier for you, possibly with help from a professional, to formulate a care plan—a strategy to provide the best care for your loved one and yourself. It’s a good idea to take some time to think about both short- and long-term needs.

This plan will always be a “work in progress,” as your loved one’s needs will change over time. To start developing a plan, first list the things you are capable of, have time for, and are willing to do. Then list those things that you would like or need help with, now or in the future. Next, list all your “informal supports”—that is, siblings, other family, friends, neighbors—and think about how each person might be able to provide assistance. List any advantages and disadvantages that might be involved in asking these people to help. Write down ideas for overcoming the disadvantages. Repeat the list for “formal” support (e.g., community services, paid home care workers, day programs).

It is important to set a time frame for any action or activities planned. Also, it is wise to have a back-up plan should something happen to you, both for the short-term and the long-term.

Step 6. Look at finances. Most people prefer to keep their financial affairs private. In order to best prepare and provide for a loved one’s care, however, you will need to gain a full understanding of his or her financial assets and liabilities. This transition can be uncomfortable and difficult. Consider having an attorney or financial planner assist you through the process (see the FCA Fact Sheet, Legal Issues in Planning for Incapacity). Assistance from a trained professional may reduce family tension and, if desired, provide you with a professional financial assessment and advice. Try to include your loved one as much as possible in this process.

Next, develop a list of financial assets and liabilities: checking and savings accounts, Social Security income, certificates of deposit, stocks and bonds, real estate deeds, insurance policies and annuities, retirement or pension benefits, credit card debts, home mortgages and loans, and so forth. It’s best to keep all these records in one or two places, such as a safety deposit box and a home file cabinet, and regularly update them. Keep a record of when to expect money coming in and when bills are due. You may need to establish a system to pay bills—perhaps you’ll need to open a new checking account or add your name to an existing one.

Step 7. Review legal documents. Like finances, legal matters can also be a delicate, but necessary, subject to discuss. Clear and legally binding documents ensure that your loved one’s wishes and decisions will be carried out. These documents can authorize you or another person to make legal, financial and health care decisions on behalf of someone else. Again, having an attorney bring up the issue and oversee any necessary paperwork can take the pressure off of you, as well as provide assurance that you are legally prepared for what lies ahead. (For more information about types of legal documents, see FCA Fact Sheets Legal Issues in Planning for Incapacity, Durable Powers of Attorney and Revocable Living Trusts, and Advance Health Care Directives.)

Other legal documents that you will want to find and place in an accessible location include Social Security numbers, birth, marriage and death certificates, divorce decrees and property settlements, military records, income tax returns, and wills (including the attorney's name and executor), trust agreements, and burial arrangements. (See FCA website page Where to Find My Important Papers at: www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=851.)

At some point, you may need to determine eligibility for such public programs as Medicaid. It’s helpful to speak with an elderlaw specialist. Information about low-cost elder legal services may be available through the Area Agency on Aging in your community.

Step 8. Safety-proof your home. Caregivers often learn, through trial and error, the best ways to help an impaired relative maintain routines for eating, hygiene and other activities at home. You may need special training in the use of assistive equipment and managing difficult behavior. It is also important to follow a safety checklist:

Be aware of potential dangers from:

* Fire hazards such as stoves, other appliances, cigarettes, lighters and matches;
* Sharp objects such as knives, razors and sewing needles;
* Poisons, medicines, hazardous household products;
* Loose rugs, furniture and cluttered pathways;
* Inadequate lighting;
* Water heater temperature—adjust setting to avoid burns from hot water;
* Cars—do not allow an impaired person to drive;
* Items outside that may cause falls, such as hoses, tools, gates.

Be sure to provide:

* Emergency exits, locks to secure the house, and,if necessary, door alarms or an identification bracelet and a current photo in case your loved one wanders;
* Bathroom grab bars, non-skid rugs, paper cups rather than glass;
* Supervision of food and alcohol consumption to ensure proper nutrition and to monitor intake of too much or too little food;
* Emergency phone numbers and information;
* Medication monitoring.

Step 9. Connect with others. Joining a support group will connect you with other caregivers facing similar circumstances. Support group members pro-vide one another with social and emotional support, as well as practical information and advice about local resources. Support groups also provide a safe and confidential place for caregivers to vent frustra-tions, share ideas and learn new caregiving strate-gies. If you can’t get away from the house, online support groups offer opportunities to connect with other caregivers nationwide. (See Resources below to find a support group.) Another way to meet others going through a similar experience is by attending special workshops or meetings sponsored by organi-zations such as the local chapter of the Alzheimer’s Association or Multiple Sclerosis Society.

Step 10. Take care of yourself. Although this step appears last on this list, it is the most important step. Caregiving is stressful, particularly for those caring for someone with dementia. Caregivers are more likely than their noncaregiving peers to be at risk for depression, heart disease, high blood pressure and other chronic illnesses, even death. Caregivers of persons with dementia are at even higher risk for poor health. The following simple, basic preventative healthcare and self-care measures can improve your health and your ability to continue providing the best care for your loved one.

Practice daily exercise. Incorporating even a small amount of regular exercise into your daily routine can do wonders—it can improve your night’s sleep, reduce stress and negative emotions, relax muscular tension, and increase your mental alertness and energy levels. The latest research shows health benefits from walking just 20 minutes a day, three times a week. Talk to your doctor about an exercise routine that is best for you.

Eat nutritious meals and snacks. Caregivers often fall into poor eating habits—eating too much or too little, snacking on junk food, skipping meals and so on. Much of eating is habit, so make it a point each week to add a new healthy eating habit. For example, if breakfast is simply a cup of coffee, try adding just one healthy food—a piece of fresh fruit, a glass of juice, whole-grain toast. Small changes add up, and can be realistically incorporated into a daily schedule.

Get adequate sleep. Many caregivers suffer from chronic lack of sleep, resulting in exhaustion, fatigue and low energy levels. Depleted physical energy in turn affects our emotional outlook, increasing negative feelings such as irritability, sadness, anger, pessimism and stress. Ideally, most people need six to eight hours of sleep in a 24-hour period. If you are not getting enough sleep at night, try to take catnaps during the day. If pos-sible, make arrangements to get at least one full night’s rest each week or several hours of sleep during the day. If the person you care for is awake at night, make arrangements for substitute care or talk to his or her physician about sleep medication.

Get regular medical check-ups. Even if you have always enjoyed good health, being a care-giver increases your risk for developing a number of health problems. Regular medical (and dental) check-ups are important health maintenance steps. Inform your doctor of your caregiving role and how you are coping. Depression is a common and treatable disease. If you are experiencing symp-toms such as a lingering sadness, apathy, and hopelessness tell your doctor. (See the FCA Fact Sheet, Caregiving and Depression.)

Take time for yourself. Recreation is not a luxury, it is a necessary time to “re-create”—to renew yourself. At least once a week for a few hours at a time, you need time just for yourself—to read a book, go out to lunch with a friend, or go for a walk. (See the FCA Fact Sheet, Taking Care of YOU: Self-Care for Family Caregivers for more helpful tips.)
Respite: A Key to Preventing Caregiver Burnout

If you care for a person with dementia, you face even greater risks for health problems than other caregivers. You are particularly at risk for caregiver burnout—a state of mental and physical exhaustion brought on by the physical, mental, emotional and/or financial stresses of providing ongoing care, usually over a long period of time. Symptoms include diffi-culty concentrating, anxiety, irritability, digestive problems, depression, problems sleeping and social withdrawal. Caregiver burnout puts both you and your loved one at risk. It is one of the most-cited reasons for caregivers placing a loved one in a nurs-ing home or other long-term care facility.

One of the most effective ways to prevent caregiver burnout is by taking care of your physical health needs, as well as your mental and social health needs. Essential to meeting these needs is to sched-ule regular time off from your caregiving duties. If you do not have a neighbor, family member or friend nearby who can provide dependable weekly help, look into respite services in your community (See Resources below.)

Respite literally means a rest—a break away from the demands of caregiving. Respite can be arranged for varying lengths of time—a few hours, overnight, a weekend, even for a week or longer. It can be pro-vided in your home or in a facility such as adult day care or a nursing home. In-home attendants may be employed by an agency, self-employed or volun-teers. Respite care can be arranged privately for a fee, paid for by some long-term care insurance policies, or sometimes provided by government or private organizations.
Locating Caregiver Resources

The number of services for cognitively-impaired adults, their families and caregivers is growing, al-though in some communities, agencies may be difficult to locate. A good place to start is the Eldercare Locator, a free nationwide toll-free service that is designed to assist older adults and their caregivers to find services in their community. Family Caregiver Alliance offers assistance as well. (See Resources for contact information.)

Consider contacting senior centers, independent liv-ing centers, Area Agencies on Aging, local chapters of national organizations and foundations such as the Alzheimer’s Association, Brain Injury Association, Multiple Sclerosis Society, Parkinson’s groups and others. Nursing home ombudsman programs, com-munity mental health centers, social service or case management agencies, schools of nursing, and church groups may be other sources of assistance. In Cali-fornia, regional Caregiver Resource Centers offer information and services. Most supportive organiza-tions are listed in the phone book under “Social Services” or “Seniors,” and many are on the Internet. Each time you talk to someone, ask for referrals and phone numbers of others who may assist you.
Online Resources

The Internet provides a wealth of information for caregivers, from an organization’s mission and contact information, to online support groups, to articles about overcoming the challenges of caregiv-ing. Most public libraries, universities and many senior centers have computers and Internet access available for free public use. If you do not know how to use a computer or how to access the Internet, don’t be shy—organization personnel are trained to how you how to get the information you are looking for. Once you get to a search engine such as Yahoo or Google, type in the search terms—the general information you are seeking, such as, “adult day care Sacramento, California” or “Alzheimer’s disease support groups,” and you will usually get a number of options to choose from. If you do not succeed the first time, try changing the search terms, such as “respite care Sacramento California” or “caregiver support groups.”

One word of caution: as with any printed material, read with a healthy skepticism—just because it is on the Internet does not make it true. If in doubt, check the information with another independent resource and talk to your loved one’s doctor before proceeding, especially in regard to medications. Remember, just because a product is called “natural” or “herbal” does not mean it is harmless, particularly when mixed with other medications.

A number of caregiver resources are available to you—all you need to do is ask for help. You do not have to do it alone.
Resources

Family Caregiver Alliance
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
(415) 434-3388
(800) 445-8106
Web Site: www.caregiver.org
E-mail: info@caregiver.org
Online Support Groups: www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=347

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.

FCA’s National Center on Caregiving offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers.

For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, ALS, head injury, Parkinson’s disease and other debilitating health conditions that strike adults.

AARP
601 E. Street, NW
Washington, DC 20049
(888) 687-2277
(202) 434-2277 (publications on caregiving)
www.aarp.org

Administration on Aging
3033 Wilson Blvd. Suite 700B
Arlington, VA 22201
(703) 228-1700
www.aoa.gov

BenefitsCheckUp
www.benefitscheckup.org

Designed by the National Council on Aging, this Website enables you to complete a questionnaire to find federal, state, and local programs that you might be eligible for and how to apply.

Caregiver Resource Room
www.aoa.gov/prof/aoaprog/caregiver/carefam/carefam.asp

Information and assistance in gaining access to supportive services in your community, compiled by the Administration on Aging's National Family Caregiver Support Program.

Children of Aging Parents
PO Box 7250
Penndel, PA 19047
(800) 227-7294
www.caps4caregivers.org

Eldercare Locator
Administration on Aging
Phone: (800) 677-1116
www.eldercare.gov

The Eldercare Locator helps older adults and their caregivers find local services including health insurance counseling, free and low-cost legal services and contact information for Area Agencies on Aging (AAAs).

Faith in Action
Phone: (877) 324-8411
www.fiavolunteers.org/programs/index.cfm

An interfaith volunteer organization providing help for those with long-term health needs.

First Gov for Seniors
www.seniors.gov

The U.S. government's one-stop-shopping site to provide you and your loved ones with better access to government services and benefits.

National Association of Professional Geriatric Care Managers
(520) 881-8008
www.caremanager.org

Well Spouse Foundation
63 West Main Street, Suite H
Freehold, NJ 07728
(800) 838-0879
www.wellspouse.org
Financial and Legal Services

National Academy of Elder Law Attorneys
1604 N. Country Club Road
Tucson, AZ 85716
(800) 677-1116
www.naela.org

Society of Certified Senior Advisors
1777 S. Bellaire St., #230
Denver, CO 80222
(303) 757-7677
www.society-csa.com
Selected Disease-Specific Organizations

Alzheimer’s Association
(800) 272-3900
www.alz.org

ALS Association
(800) 782-4747
www.alsa.org

American Brain Tumor Association
(800) 886-2282
www.abta.org

American Cancer Society
(800) 227-2345
www.cancer.org

American Stroke Association
(Division of American Heart Association)
(800) 553-6321
http://asa.healthology.com

Brain Injury Association
(800) 444-6443
www.biausa.org

Huntington’s Disease Society of America
(800) 345-4372
www.hdsa.org

Multiple Sclerosis Society
(800) 344-4867
www.nmss.org

Centers for Disease Control and Prevention (CDC)
National Prevention Information Network (NPIN)
(800) 458-5231
www.cdcnpin.org

National Parkinson Foundation
(800) 327-4545
www.parkinson.org
Credits

AARP. (2003). My Parents - How Do I Know If They Need Help? Retrieved January 28, 2004, from www.aarp.org/Articles/a2003-10-27-caregiving-needhelp.html

AARP (2003). New Caregivers. Retrieved January 28, 2004, from www.aarp.org/Articles/a2003-10-27-caregiving-newcaregiving.html

Family Caregiver Alliance. (1999). FCA Fact Sheet: Caregiving.

Vikki L. Schmall, Marilyn Cleland, and Marilynn Sturdevant. (2000). The Caregiver Helpbook: Powerful Tools for Caregiving. Legacy Caregiver Services.

Bob Rosenblatt and Carol Van Steenberg (2003). Handbook for Long-Distance Caregivers. Family Caregiver Alliance, CA.

Stage 1: Denial

2007-07-25T05:39:00.000-07:00

“Dad, did you set your alarm and forget to turn it back?
Your clock is 6 hours ahead.”

“Oh? That thing’s broken. Some numbers don’t show up anymore.”

I adjusted his digital alarm clock back to the current time.
It was working fine.

After hearing several of dad’s vision complaints such as this, as well others like “ "I see things backwards sometimes,” and a few mistaken turns from the highway to off-ramps marked WRONG WAY, we decided it was time to fix the problem. He was 69 then and had been wearing glasses since I could remember. It seemed logical he was due for a check up and possibly a stronger lens prescription.

Later at Lens Crafters, my sisters and I playfully slipped endless varieties of hip, new frames across my father’s grimacing face--Laughing at the ridiculousness of Gucci Couture paired with his unassuming London Fog, plaid shirt and brown cords. After about the twentieth pair he'd had it,“Parties over,” he announced, laughing. “I’ll take the no-names.” They were the cheapest pair and appeared almost identical to the glasses he’d worn for the past 15 years. My sisters and I made fun of him for being a walking time capsule from 1984 and he cracked up. We laughed a lot the day.

“They must have missed something the first time,” was Dad’s response after I confronted him about the disappearing car episodes.

Shortly after his first exam, new no-name glasses in tow, dad reportedly couldn’t find his car in the supermarket parking lot. His friends, the recipients of his phone calls for help, grew increasingly concerned and covertly reached out to me to express their worry. As it turned out this was business as usual for dad. When I confronted him about the scenario he was surprised at me for being surprised. Later I came to find he was just going about his day as always--Half blind, but with a perfectly good pair of eyeglasses.

We decided to return to the Optometrist and get re-tested, explaining to him although some things were clearer, depth perception was still a problem and sometimes certain objects would just disappear… Like digital numbers on a clock, or a car in a crowded parking lot. The second exam concluded the same as the first: There was nothing wrong with dad’s eyes. His vision was deemed “normal,” despite random episodes relating to the opposite.

We requested a referral from his GP and made an appointment with an Ophthalmologist. Certainly a doctor with extensive medical training specializing in the eye would have the answer. We were hopeful her clinical experience would solve the mystery, but to no avail. Instead she concurred: "There's nothing wrong with your father's original prescription, but have you considered Cataract surgery?“

For years, doctors dismissed dad’s vision complaints as being “all in his mind.”
Over and over again the complexities of his disability were misunderstood, leaving the true cause of his impairment to slip under the radar. Our frustration was mounting but we refused to accept dad’s visual impairment as unsubstantiated by the eye “experts.” In the meantime, his girlfriend Lois was spearheading our quest for a more accurate diagnosis. She spent the most time with him and had developed a keener sense of his mysterious eye problems. It was Lois who mentioned, through her Internet research, that his symptoms sounded similar to a dementia-related malady. A problem that had less to do with his eyes but more to do with his brain. We didn’t like the sound of it, but the inconclusive results we’d encountered so far had been too erroneous to accept.

Our GP suggested we contact a specialist from the Mayo Clinic. We were told we should be thankful they could squeeze dad in as a new patient--in six months time. Graciously, we thanked the nurse for fitting us in to see Dr. Murman, the highly acclaimed Neurologist. At the same time I wondered to myself just what the hell dad’s vision problems had to do with Neurology.

48 hours before his appointment, dad’s eyesight issue quickly became more involved. The nurse called to remind us to prepare appropriately for the following: CAT, PET, EEG, LP and MRI. Later I found these acronyms were really tests they’d planned to perform on dad to isolate the problem. When asked what exactly these tests would be measuring, in English, the nurse responded with a series of brain-related phrases:

They would evaluate Spinal fluid to diagnose bleeding around the brain, inflammation of the brain, or possible increased pressure from the hydrocephalus, (A.K.A. swelling of the brain). His brainwaves would be measured and recorded to determine characteristics of consciousness, and also detect potential developing brain diseases. Another chemical would be injected and detectors would sense where the chemical collected. The image resulting would give us information on the presence of damaged brain cells.

A serious amount of braintalk was being thrown around. But what had not been explained was the correlation of dad’s vision problems to the brain proper. What were we delving into, exactly? My gut told me nothing good. Any test that required release forms be signed prior to administration was no simple matter. No matter was ever easy, I began to realize, if it related to the brain.

After receiving the test results Dr. Murman concurred yes, dad’s vision appeared to be fine traditional sense--there was indeed nothing wrong with his eyes. But instead, the problem lied in his ability to perceive what he saw. More specifically, the synapses or connections that linked the brain receptors to eye receptors were damaged. Plaques had built up around them, slowing down or in certain cases destroying the visual comprehension process. Due to an unknown cause at the time, the rear dermal portion of his brain, the part controlling visual perception, spacial relationships, and object recognition, was severely weakened. The formal diagnosis was Posterior Cortical Atrophy (PCA)--A rare degenerative brain disorder.

As if this weren’t bad enough, the Neurologist went on to further define my father’s affliction as a visual variant of Alzheimer’s Disease, and chances were high that within the next few years, preceding the inevitable memory loss, he would indeed go blind.

What's Wrong With Dad?

2007-07-24T05:00:00.000-07:00

Dad mentioned eye problems in the past...Things like misjudging distances while driving, seeing things turned backwards, and the curious disappearing of digital numbers on his alarm clock. All the specialists insisted there nothing wrong with his eyes. For years my father was misdiagnosed over and over again. His vision difficulties were dismissed as being "all in his mind," and the unusual cause of his degenerative brain disorder slipped covertly under the radar.

We didn't expect to hear that within the next two years, dad would be legally blind. That prediction came from a Neurologist. Unfortunately he was the last doctor in a series of six we'd consulted. It took us three years to discover Dad's vision problems were caused by Posterior Cortical Atrophy, a visual variant of Alzheimer's Disease. Although this news was painful to digest we understood facing our demons was far more productive than hiding from them, accepting a misdiagnosis, or chalking dad's vision complaints up to "old age."

Today, Dementia related illnesses remain elusive to the medical community. Although we continue to chip away at Alzheimer’s with new medical breakthroughs, until we find a cure there’s much left to discover. In my father’s case over a course of three years, we consulted with two General Practitioners, two Optometrists, an Ophthalmologist, Radiologist, Psychiatrist, and Neurologists to come up with an accurate diagnosis. Had we listened to the first recommendation for Cataract surgery and left it at that, dad would still be struggling to navigate through a shadowy world, legally blind, but with 20/20 vision.

The Inspiration

2007-07-18T06:21:00.000-07:00

I’ve battled with the idea of writing this book for many years.
One side of me felt compelled to rid the overwhelming feelings my father’s illness brought about: Guilt, anger, anxiety, frustration and sadness like I've never felt. Another side was terrified to put pen to paper for fear of facing a reality that was completely beyond my control.

This blog samples our memoir. It offers glimpses of my father passing his baton to me, whether I was ready for the hand off or not. It also gives resources and tools that I found useful as I went through the journey with him.

The memoir remains a work in progress, and I hope—whether it be learning to cope, empathizing with my experience, or knowing you are not alone as you go through your own—that it helps.

Important Legal Issues

2007-07-18T06:15:00.000-07:00

When a family member has been diagnosed with Alzheimer’s disease or another disabling health condition, it’s easy to feel overwhelmed by the many legal and financial questions that can arise as a result of the diagnosis. Determining how to pay for long-term care is often confusing for families. It is impor-tant to find an attorney with whom you feel comfortable and who has the expertise to advise you on these matters.

Q: What legal matters should be discussed when a family member has a health condition that affects his ability to function independently?
There are several legal issues to consider when a person is (or may become) incapacitated:

The management of the person’s financial affairs during his or her lifetime;
The management of the person’s personal care: medical decisions, residence, placement in a
nursing facility, etc.;
Arranging for payment of long-term health care: use of private insurance, Medicare, Medicaid (Medi-Cal in California) and Supplemental Security Income (SSI) when applicable;
Preserving the family assets: ensuring that the patient’s spouse and any disabled family members are adequately protected; and
The distribution of the person’s assets on his or her death. (If the person has a disabled spouse, child or other family member that they wish to provide for, special arrangements need to be made.)
In addition to issues that are clearly “legal,” other important issues should be discussed in the course of legal planning. For example, a full discussion of housing options is critical in making certain legal and financial decisions; i.e., is the person planning to stay in his home? Is this feasible, both physically and financially? Is he thinking of moving to a retirement facility? What level of care is provided? Is it a rental or a “buy-in” arrangement? Is a move to a nursing home probable?

Q: When should an attorney be consulted?
Consult an attorney as early as possible. The maximum number of planning options will be available while the patient still has the legal capacity to make his or her own decisions. The question of capacity is a gray area, and must be determined on a case-by-case basis.

Q: What are the options for managing assets?
Options for managing assets include:

Durable Powers of Attorney;
Revocable living trusts;
Designation of a representative payee; and
Conservatorship (or Guardianship) of the estate and of the person.
Each of these has advantages and disadvantages, which should be discussed thoroughly with an attorney. Further, for making medical decisions, you should discuss the use of a durable power of attorney for health care, directive to physicians, and conservatorship (or guandianship) of the person.

Q: What are the options for paying for long-term care?
Investigate first the availability of private insurance to cover long-term care, whether at home or at an assisted living or skilled nursing facility. Also examine the government benefit programs that may help pay for care:

Medicare
Medicaid or Medi-Cal
Supplemental Security Income (SSI), and
In-Home Supportive Services (IHSS).
If the person served in the United States Military, federal or state veteran assistance may be available.

Q: Can any assets be protected—for a well spouse, for example—if a patient needs long-term custodial care in a skilled nursing facility?
Various planning options may be available to finance long-term care. Much depends on the individual's circumstances; i.e., marital status, mental capacity, age and health of the care recipient, and, most importantly, the applicable law in the state where the individual resides. Medicaid, a federal program administered by the states, may pay for care in a facility. The rules regarding planning vary from state to state. Planning options can include:

Converting non-exempt assets into exempt assets;
Transfer of the family residence to a spouse;
Transfer of the principal residence with the retention of a life estate;
Use of court orders to increase the amount of resources and/or income the spouse of a nursing home resident can retain;
Trusts; and
Gifting of assets.
Each of these options has significant implications and should be thoroughly discussed with an attorney knowledgeable in Medicaid law.

Q: How can an individual provide for the distribution of his or her property upon death?
The options for distributing assets on death include:

Will
Revocable Living Trust
Joint Tenancy Accounts
Payable on Death Accounts
Transfer with a Retained Life Estate
Each of these has significant legal ramifications and should be discussed with a knowledgeable advisor. Also, some financial products, such as life insurance, IRA’s and annuities, provide for the distribution on death to a designated beneficiary.

Q: How do you find an attorney to assist with legal planning?
One of the best ways to find an attorney specializing in elder law is through a personal recommendation from a friend, relative or co-worker, or from another attorney whom you know and trust. Another way to get a personal recommendation is to attend a caregiver support group. Someone there may already have had experience with a knowledgeable attorney and be able to share his or her experience. Referrals, and advice for individuals aged 60 or over also may be obtained from senior legal services provided by your local Area Agency on Aging. Independent community legal aid agencies also may offer assistance to people of all ages.

Another way to locate an attorney is through an attorney referral service. The local bar association in your community may have a panel which refers callers to lawyers in various specializations. After describing your needs, you will be referred to the most appropriate specialist. Initial consultations generally include a nominal fee.

Caution should be exercised if such a referral service is used. Panel-referred attorneys need meet only minimum requirements and may have little experience. It is important to check the qualifications of an attorney and to make calls to compare fees and experience. Keep in mind that laws vary from state to state. The National Academy of Elder Law Attorneys may also be able to help you.

Q: What kind of attorney should be consulted?
Most attorneys concentrate on one or two areas of law. It is especially important for caregivers to find an attorney who has the appropriate expertise. Attorneys advising caregivers on planning for long-term care should have knowledge of the following areas of law:

Medicaid (Medi-Cal) laws and regulations
Social Security
Trusts (special needs trusts)
Conservatorships
Durable power of attorney for health care and asset management
Tax (income, estate and gift) planning
Housing and health care contracts
Some attorneys are certified specialists. For example, an attorney can be a certified specialist in elder law, taxation, or estate planning. In the case of an accident, a personal injury attorney is needed. In that case, it is advisable to select someone who has had jury trial experience.

Attorneys often do not know about all of the above-mentioned areas. In the case of a personal injury, two attorneys may be needed—one to litigate an accident settlement and another to help plan for long-term financial or health care needs.

Q: What should you do to prepare for a legal consultation?
It’s helpful to have a clear idea of what you would like as the outcome of a legal consultation—that is, what you would like to gain from the appointment. Learning as much as possible ahead of time will help ensure a productive consultation.

More specifically, individuals who are interested in a health care directive may wish to think about the type of life-sustaining procedures they would want used in the case of a serious illness. In addition, it may be helpful to identify a first, second and third choice of family member or trusted friend to make personal health care and financial decisions in the event you are unable to do this for yourself. (See the FCA Fact Sheet, End-of-Life Decision Making.)

Items to Bring to the Consultation

List of major assets (real estate, stocks, cash, jewelry, insurance, etc.);
Any documents of title (e.g., copies of deeds, stock certificates, loan papers, etc.) which show who the asset owners are and how title is held;
Contracts or other legally binding documents;
Lists of all major debts;
Existing wills or Durable Powers of Attorney; and
Bank statements, passbooks, CDs—again showing who the owners are and how title is held.
Glossary

Advance Health Care Directive. An Advance Health Care Directive is a document in which you can: 1) instruct your physician as to the kinds of medical treatment you might want or not want in the future (in many states, this is called a Living Will); and 2) choose someone to make medical decisions for you in the event you are unable to make those decisions yourself (in many states, this is called a Durable Power of Attorney for Health Care, or just a Power of Attorney for Health Care). For additional information on advance directives, see FCA Fact Sheets, End-of-Life Decision Making and California Advance Health Care Directive.

Attorney-in-Fact. The person named in a Durable Power of Attorney to act as an agent. This person need not be an attorney.

Beneficiary. An individual who receives the benefit of a transaction, for example, a beneficiary of a life insurance policy, a beneficiary of a trust, beneficiary under a Will.

Conservatee or Ward. The incapacitated person for whom a conservatorship or guardianship has been established.

Conservator or Guardian. An individual who is appointed by the court to act on behalf of an incapacitated person.

Conservatorship or Guardianship. A court proceeding in which the court supervises the management of an incapacitated person’s affairs and/or personal care.

Directive to Physicians. A written document in which an individual states his or her desire to have life-sustaining procedures withheld or withdrawn under certain circumstances. This document must meet certain requirements under the law to be valid.

Durable Power of Attorney for Health Care. A type of Advance Health Care Directive, this is a document in which an individual nominates a person as his or her agent to make health care decisions for him or her if he or she is not able to give medical consent. This document can give the agent the power to withdraw or continue life-sustaining procedures.

Durable Power of Attorney for Asset Management. A document in which an individual (the “principal”) nominates a person as his or her agent (attorney-in-fact) to conduct financial transactions on his or her behalf. This document can be either “springing,” which means that it is effective only upon the principal’s incapacity, or “fixed,” which means that the document becomes effective when it is signed.

Executor. The individual named in a Will who is responsible for administering an estate during probate. The Executor is the person responsible for making sure all taxes and other expenses are paid and distributing the property of the deceased person in accordance with the Will.

Federal Estate Taxes. A tax is due at death if the estate exceeds $1,500,000 (as of 2004), and is calculated on the value of the deceased person’s estate at the time of death.

Health Insurance Portability and Accountability Act of 1996 (aka HIPAA). Federal legislation which limits the informal communication of information from doctors and other health care providers

In-Home Supportive Services (IHSS). A programin California that pays for non-medical services for persons who meet certain financial criteria and who could not remain safely at home without such services.

Irrevocable Trust. A trust that has terms and provisions which cannot be changed.

Joint Tenancy. A form of property ownership by two or more persons designated as “joint tenants.” When a joint tenant dies, his or her interest in the property automatically passes to the surviving joint tenant and is not controlled by the Will of the deceased joint tenant and is not subject to probate.

Life Estate. An interest in property that lasts for the life of the person retaining the life estate. When a person who has a life estate interest dies, the property passes to the person holding the remainder interest, without the need for probate.

Living Will. A written document in which an individual conveys his or her desire to die a natural death and not be kept alive by artificial means. Unlike a Durable Power of Attorney for Health Care, the wishes in this document are not legally enforceable in California.

Long-Term Care Insurance. Private insurance which, depending on the terms of the policy, can pay for home care, or care in an assisted living facility or skilled nursing facility.

Medicaid. A state and federally financed program that provides medical care to low income persons. In California it’s called Medi-Cal.

Medicare. A federal medical coverage program for persons who are over 65 years old or who are disabled. It is funded by Social Security deductions and has no income or resource restrictions. It does not pay for long-term custodial care.

Probate. The court proceeding which oversees the administration of a deceased person’s estate. Wills are subject to probate; living trusts (if properly funded) are not.

Revocable Living Trust. A device that describes certain property, names a trustee (who manages the property) and names a beneficiary who receives benefit from the trust. A living trust is an effective means of avoiding probate and providing for management of assets. It can be revoked by the person who created it during that person’s lifetime.

Social Security Retirement Benefits. Benefits, which eligible workers and their families receive when the worker retires. The worker must work for a specified period at a job that is covered by Social Security in order to be eligible for benefits. A worker must be at least 62 years old to receive retirement benefits.

Social Security Disability Benefits. Social Security benefits payable to disabled workers and their families.

Special Needs Trust. A specially drafted trust that provides a fund to supplement the governmental benefits of a beneficiary while not affecting that beneficiary’s eligibility for public benefits.

Supplemental Security Income (SSI). A federal program which provides cash assistance to the aged, blind and disabled who have limited income and resources.

Testator. The person who executes a Will.

Trustor (Settlor). A person who creates a trust.

Trustee. The individual who is responsible for managing the property in the trust for the benefit of the beneficiary.

Will. The document a person signs which tells how he or she wants his or her estate administered and distributed upon death. It must conform to certain legal requirements in order to be valid. The terms of a Will become operational only upon the testator’s death.

Resources

Family Caregiver Alliance
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
(415) 434-3388
(800) 445-8106
Web Site: www.caregiver.org
E-mail: info@caregiver.org

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.

FCA’s National Center on Caregiving offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers.

For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, ALS, head injury, Parkinson’s disease and other debilitating health conditions that strike adults.

American Bar Association (ABA)
Commission on Legal Problems of the Elderly
740 Fifteenth Street, NW
Washington, DC 20005-1022
(202) 662-8690
Fax: (202) 662-8698
www.abanet.org/elderly

The general public may contact the ABA to obtain information on county bar associations. County bar associations provide attorney referrals through local attorney referral offices throughout the U.S.

National Academy of Elder Law Attorneys
1604 N. Country Club Rd.
Tuscon, AZ 85716
(520) 881-4005
www.naela.com

Provides information on how to choose an elder law attorney and referrals to elder law attorneys.

National Association of Area Agencies on Aging
1112 - 16th Street, NW, Suite 100
Washington, DC 20036
(202) 296-8130
www.n4a.org

Provides information on local Area Agencies on Aging which coordinate a variety of community-based services for senior citizens, including legal services.

National Senior Citizens Law Center
1101 14th St., NW Suite 400
Washington, DC 20005
(202) 289-6976
(202) 289-7224 fax
www.NSCLC.org

NSCLC closely monitors court rulings, legislation and regulatory changes which affect older persons. They also publish a weekly newsletter.

Written by Harriet P. Prensky. Ms. Prensky is a certified elder law attorney and partner in the law firm of Prensky & Tobin in Mill Valley, California. She focuses on legal problems of the elderly and disabled, estate planning and probate, and is a Fellow on the National Academy of Elder Law Attorneys. Prepared by Family Caregiver Alliance in cooperation with California’s Caregiver Resource Centers. Funded by the California Department of Mental Health. © 2004 Family Caregiver Alliance. All rights reserved.

Making Placement Decisions

2007-07-16T18:53:00.000-07:00

The decision to place a loved one in a care facility may be the hardest decision families have to make. I remember the ache in my heart as I left my father in the nursing home the day he moved there. And the ongoing conflict I felt when I visited him. Caregiving doesn’t end when you move someone, it just changes.

How does one make such a decision? What should one consider?

Sometimes circumstances dictate the decision, for example, a caregiver gets sick and is no longer able to provide care. Or the care receiver breaks a hip and needs more care than can be given at home. This can make the decision a little easier because the situation decides for you.

At other times the decision is made because the caregiver is burned out, not sleeping, or finances demand that nursing home placement is the only option (Medicaid and Medi-Cal criteria for a nursing home are different than those for help at home). Often caregivers feel guiltier when they make the decision under these circumstances. Everyone has their own turning point.

In making the decision about placement, caregivers balance their emotions with objective practical information. Both play a role in when and how the decision is made. It is a process of balancing the positives and negatives for the primary caregiver and the care receiver.

Finances always play a role in this decision. A discussion with an attorney will help sort out estate planning for Medicaid or Medi-Cal eligibility in case a nursing home is necessary in the future. (See FCA’s fact sheet Legal Issues in Planning for Incapacity for more information).

Research shows that the main reasons one places a loved one in a facility are: need for more skilled care, the health of the caregiver, dementia-related behavior problems, need for more assistance, or depression in the care receiver. When the demands of caring are high and the caregiver’s feelings of satisfaction are low, you are more likely to consider placement. Caregivers who get help early in their caregiving careers and have support from community, friends and family—especially with overnight help and activities of daily living—are more likely to delay out-of-home placement. Getting counseling and/or attending support groups may help caregivers keep someone at home longer.

When a caregiver has a conflicted relationship with the care receiver, the decision to move is harder. Those with a more mutual or better understanding with the care receiver will experience less guilt and other negative emotions, knowing the decision is in the best interest of the care receiver and themselves.

It is easier to make this decision when the whole family is involved, because then it is a joint decision (see FCA’s fact sheet, Holding a Family Meeting). The earlier in the disease process that these issues can be discussed, the easier it will be to make the decision when the time comes. It’s better to make a decision when it is not made in crisis mode.

Promises to never put someone in a nursing home may need to be modified because when such promises were made, you didn’t know what the situation would be in the future. The best promise you can make is: “I will do my best to give you the best care I can throughout your illness.” This allows you to make the “right” decision as circumstances dictate.

Part of gathering information is discovering what the options are, the costs, and kind of care provided. FCA’s Fact Sheet, Residential Care Options, is a beginning guide. Your family consultant can also refer you to resources to help you define the level of care you need and your options in the community.

Taking the time to visit facilities will help you decide which one is right for you and your loved one. When making a visit, be prepared to deal with a flood of emotions. It can help to invite a friend or family member to go with you. Debriefing afterward will help you integrate your experience of the facility and your feelings about the place.

California Advocates for Nursing Home Reform, or CANHR (www.canhr.org) has many fact sheets to help guide you through the evaluation of facilities and what to consider in making your decision. In particular, read “Self Assessment for Community Services and Out of Home Placement.”

For many of us, moving a relative from home is the last decision we want to make. Too often, caregivers continue to provide care far beyond their physical and emotional capabilities before they even consider long-term placement of their impaired relative. It is difficult to accept the truth about our own humanness and our own capabilities. It can be hard to admit that we are powerless to make our loved ones feel better or to change the course of the disease. The truth is, no matter how much care we provide or how much of our own lives we neglect, our loved ones will never be the same.

The most common emotion when placing a loved one is guilt. Guilt means you did something wrong. Placement is not “wrong,” but one of the hardest decisions that one ever has to make. It takes a lot of courage. We can change the “guilt” to “regret” by understanding that it is the circumstances of a terrible disease, a difficult care situation, and a need to take care of ourselves as well as our loved ones. With all of these emotions comes grief, the loss of the person who was, the loss of what we vowed to do for a loved one, the loss of our role as the primary caregiver. Healing comes from allowing ourselves to feel the loss, experience the sadness and get support for our decisions. Your family consultant can help you as a resource, for emotional support and for advanced care planning.

Source: ©Family Caregiver Alliance

10 Realistic Strategies For Dementia Care

2007-07-16T17:14:00.000-07:00

Oftentimes caregivers rely on intuition to guide them. No one ever gave us lessons on how to relate to someone with memoryloss. Unfortunately, when it comes to Alzheimer’s disease and other dementias, often the right thing to do is exactly opposite of what seems logical. Here is some practical advice:

1. Being reasonable, rational and logical can be counter intuitive.
When someone is acting in ways that don’t make sense, we tend to carefully explain the situation, calling on his or her sense of appropriateness to get compliance. However, the person with dementia doesn’t have a “boss” in his brain any longer, so he does not respond to our arguments, no matter how logical. Straightforward, simple sentences about what is going to happen are usually best.

2. People with Dementia don't need to be grounded in reality.
When someone has memory loss, he often forgets important things, e.g., that his mother is deceased. When we remind him of this loss, we remind him about the pain of that loss also. When someone wants to go home, reassuring him that he is at home often leads to an argument. Redirecting and asking someone to tell you about the person he has asked about or about his home is a better way to calm a person with dementia.

3. Stop trying to be the perfect caregiver.
Just as there is no such thing as a perfect parent, there is no such thing as a perfect caregiver. You have the right to the full range of human emotions, and sometimes you are going to be impatient or frustrated. Learning to forgive your loved one as well as yourself is essential in the caregiving journey.

4. Therapeutic lying can reduce stress.
Most people strive for honesty as the best policy. However, when someone has dementia, honesty can lead to distress both for them and us. Does it really matter that your loved one thinks she is the volunteer at the day care center? Is it okay to tell your loved one the two of you are going out to lunch and then “coincidentally” stop by the doctor’s office on the way home to pick something up as a way to get her to the doctor.

5. Making agreements doesn’t work.
If you ask your loved one to not do something, or to remember to do something, it will soon be forgotten. For people in early stage dementia leaving reminder notes can sometimes help, but as the disease progresses this won't work. Taking action, rearranging the environment rather than talking and discussing is usually a more successful approach. For example, getting a teakettle with an automatic “off” switch is better than warning someone of the dangers of leaving the stove on.

6. Sometimes, even your doctor needs educating.
Telling the doctor what you see at home is crucial. The doctor can’t tell during an examination that your loved one has been up all night pacing. Sometimes doctors need to deal with therapeutic lying; e.g., telling the patient that an antidepressant is for memory rather than depression.

7. You can’t do it all.
It is harder to ask for help than to accept it when it is offered, so don’t wait until you “really need it” to get support. If someone offers to help, your answer should automatically be “YES.” Have a list of things people can do to help, whether it is bringing a meal, picking up a prescription, or staying with your loved one while you run an errand. This will reinforce offers of help. It’s OK to ask for help before you get desperate.

8. Beware of misjudging what your loved one can or cannot do.
It is often easier to do something for our loved ones than to let them do it for themselves. However, if we do it for them, they will lose the ability to be independent more quickly. On the other hand, if we insist individuals do something for themselves and they get frustrated we just make our loved one’s agitated and probably haven’t increased their abilities to perform tasks. Not only is it a constant juggle to find the balance, but be aware that the balance may shift from day to day.

9. Tell, don’t ask.
Asking “What would you like for dinner?” may have been a perfectly normal question at before. But now we're asking our loved one to come up with an answer when he or she may be incapeable of expressing what they want. Even if they can answer, they might not want the food when it's served after all. Saying “We're going to eat now” encourages without put them in the position of having failed to respond.

10. It's perfectly normal to question the diagnosis when someone has moments of lucidity.
One of the hardest things to do is to remember we're responding to a disease, not the person who once was. Everyone with dementia has times when they make perfect sense and can respond appropriately. Sometimes it may seem that person may have been faking it, or that we've been exaggerating the problem when these moments occur. We're not imagining things—they're just having one of those moments, moments to be treasured when they occur.

The Disease

2007-07-13T14:26:00.000-07:00

When I ask people if they’ve heard of Posterior Cortical Atrophy, they shake their heads. When I mention it’s a rare form of Dementia, or more specifically, a visual variant of Alzheimer’s Disease they nod, prematurely. As if they’re familiar with the ghost that haunts my father’s mind. They say they can relate because they know someone who knows someone who has it, and I listen respectfully as they tell their tale. As it turns out they don’t know and they can’t really relate--but I’m used to that now. I tell them I understand, and empathize, but my father’s case is different. And so begins my mantra:

My father’s memory is still in tact, but he can no longer perceive space and time. This unique strain of Alzheimer’s has robbed him of his vision and although he’s legally blind, he still shaves his face in a mirrored reflection he cannot see.

My father isn’t old. He’s 69. He looks like he’s 50 and he’s in better physical condition than most of my 30-something peers. He’s been aerobicizing everyday for the past 18 years. He’s always eaten fruits and vegetables and steered clear of red meat bad fats and processed foods. He doesn’t drink or smoke or engage in strenuous activity. He monitors his heart and watches his cholesterol. He lives in Michigan where the air is clean and water is pure. He’s done everything right. But all those things done right made no difference in the end. Looking back he should have been more concerned with drinking a cold beer outside on a spring day, or feeding the ducks by the river.

The PCA variant is not your grandfather’s Alzheimer’s Disease. It’s not the kind erases the memory of a daughter’s face, at least not at first. What makes PCA such so unusual is that it effects visual perception and motor ability before the memory goes. Meaning, unlike most Alzheimer’s patients who forget who they are before their bodies fail them; my father will retain the awareness of his deterioration.

First goes the vision, then his body, then the mind. Eventually he will forget how to breathe.
But he may never lose complete self-awareness. This notion is the hardest to take.

But for now, he’ll hold his hand out for you to shake and look you in the eye. He’ll greet you confidently and charm you with ease. He’s quick to engage with an insightful discussion of foreign policy or current events or art history and you’ll be disarmed by his wit. Most people are oblivious that my father has dementia--I should know. I was one of those people for 15 years.

The Things We Hold Dear

2007-07-12T21:02:00.000-07:00

As far back as I can remember, my father always communicated with me on the level--his level. He had this unique way of making me feel important. As if I were never a child. He would confide in me, report his struggles at work, or with my sisters, or my mother, or society. He’d utilize me as his personal sounding board but I took at as a compliment.  I would listen--intently. As if I could comprehend his hardships with the mind of a woman. And as one may guess, with his confidence in me, I grew up quickly and since abandoned what young girls find intriguing during their formative years.  I don't recall a sandbox, but I see myself in yellowed photographs touting pail and shovel inside one. Maybe mine. But I don't recall the quintessential "fun" times of my youth.  I remember the serious times.

The world we lived in according to Dad, was plagued by the ME generation: A society that begged to be entertained. Frivolous luxuries like amusement parks, Dominos pizza, and shirts with tiny alligators on them were considered “excessive,” “superfluous,” unnecessary things of which his daughters would never indulge--
Not as far as he was concerned.

Instead dad took us to college. He turned the campus of Michigan State University into our playground. It was there that we'd get lost in botanical gardens, or embark upon journeys through the arboretum. We'd find sunken treasure in gathered pennies green and varnished within the fountain outside the library. Or my favorite, adventures of the art institute: Wandering aimlessly amongst ghosts of The Masters, lost deep within the labyrinths of the Expressionist wing. Here my father would point out works by Kandinski and Modigliani, and Van Gogh, quizzing us on the differing methods of each.

For a man who strived to shelter his daughters from a declining American culture,  he did his best to amuse us in unconventional ways--His library being our main source of amusement. Mostly heavy, hardcover versions on the subjects of Fine Art, Greek Tradition or Memoirs of World Wars. And as we read them or shall I say, paged trough the pictures, as he fed 8-tracks of the Beatles or Pink Floyd or some obscure Cuban folk tune into the stereo...And we'd pester him with deconstruction of funny lyrics incessantly giggling:
 
"Dad, why is Lucy in the sky with diamonds?"
"Dad, why is he saying he is the walrus?"
"Dad, why don't we need no education?"

Occasionally he would take us to the movies, but the art house ones, where granola and fresh cider were exchanged for popcorn and pop. The featured matinee was not Cinderella but instead, The Milagro Bean Field War. Sometimes we'd huddle together on his lap to take in some vintage TV: A snowy 15" RCA from 1969 complete with (inert) rabbit ears extending miles long. 60 Minutes on Sundays became a weekly tradition. And we bonded, laughing when he did, at the trivial discoveries of Andy Rooney.   That's about as lighthearted as it got on weekends with dad.  

But he never stopped trying. He marched us to church on Sundays and Greek dance lessons on Mondays. And while our classmates were shipped off to Mystic Lake for summer camp, dad would take us on family excursions around town. Or sometimes not so around town. Like the trip that exported us 45 miles outside of the cosmopolitan boundaries of East Lansing, Michigan, to the forests of Pine Stump Junction (population 40) just so we could catch the excitement of the Soy Bean Festival. Which in retrospect is such a happy memory, because after an excruciating three-hour car ride we discovered the anticlimactic festival was just that: Mounds of Soybeans and not much else lying dormant in piles, wilting in the rain.  This was fun for us because even dad laughed that day, and we felt closer to him because of it.

Back at his condo we would pounce upon our respective heating vents. He kept the place a balmy 62 degrees when we weren't there, and on the special occasions when his daughters stayed the night, Dad would crank it to 68 in our honor. Although the weekend sleep away he created seemed a bit chilly, his valiant attempts to make a happy home warmed us from within. Even as children our hearts went out to him for trying. We knew this was the best he could do. No matter how unconventional he never stopped trying. He was the ultimate underdog for his children and for that reason, he was our hero. And always will be.

Dad taught me many lessons.  And as a young girl, I may have been pushed into adulthood far before my time but I will say this: I have no regrets. These lessons made me the woman I am today. One that pays her own mortgage and trades her own shares and rarely feels the stresses and burdens of a life un-handleable. The flow charts of expenses and ethical anecdotes may have been premature for a child of nine, but they taught me independence, and that "money didn't grow on trees," and most importantly, attempts to do right no matter how unconventional are never inappropriate if inspired from the heart.

So this one's for you Dad. For the flowcharts, the campus, the cider, and the soybeans.  For Zorba, and Van Gogh and the Egg man...Your most valiant attempts to raise me right, no matter how unconventional, are what made me exceptional.
And I am honored to be your daughter.

Alzheimer's Association Response to Enbrel Treatment

2007-06-26T05:39:00.001-07:00

The Alzheimer's Association offers their response for the use of Enbrel to treat Alzheimer's taken from Alzheimer News on 1/15/2008.

The Alzheimer’s Association welcomes new ideas for Alzheimer therapies, such as this. But we are concerned that, in their strong desire for more effective therapies, people with Alzheimer’s and their families may place undue value on this new finding based on the dramatic language used in its description and the apparent immediate effect. Special care needs to be taken when investigating and discussing drugs already on the market in order that they are not prescribed nor made available inappropriately based on preliminary findings and/or news media coverage.

This possible treatment strategy is very preliminary. This newly published case study is of one subject. In addition, one of the lead investigators has stock in the company that produces the drug and has a number of patent positions in the area. All of this strengthens the need for independent confirmation to establish this finding.

Before this drug can become an accepted therapy for Alzheimer’s disease, it would need to go through the FDA approval process, including randomized, blinded clinical trials. We need to see clinical studies in large, diverse populations. We need to see work in other laboratories by scientists without financial interest in the product. These things are only possible – for this and other potential therapies – if we have more resources available to the fight against Alzheimer’s.

In addition, this was not a registered, controlled clinical trial. Clinicians should not take this report as grounds for off-label use of Enbrel for Alzheimer's. The nature of the drug delivery technique used in this research (injection by needle into the back of the neck, followed by a brief period with the head lowered and feet elevated) is an unusual route for administering a drug intended for action on the brain. This unconventional route - designated by the authors as "perispinal" (meaning "near or around the spine") though never described in detail – makes Enbrel injection in this manner very unlikely to succeed in a chronic condition such as Alzheimer's, although this technique might form the basis for a "proof of concept" trial. Clinical trials of Enbrel delivered by this method should only be undertaken by investigators specially trained in safe administration of injection via this route (i.e., anesthesiologists or neurosurgeons).

The epidemic of Alzheimer's, and improving therapies and prevention

There is a growing epidemic of Alzheimer’s disease. Currently there are as many as 5 million people with Alzheimer’s disease. By 2050, experts predict that there may be as many as 16 million. By 2030, Medicare spending on those with Alzheimer’s alone may cost nearly $400 billion – roughly equivalent to today’s entire Medicare budget. Alzheimer’s could bankrupt the system and become the healthcare crisis of the 21st century.

That’s why we need better treatments and eventually prevention for Alzheimer’s. To do that, we need to follow through on established therapeutic targets and compounds, and also put more new treatment approaches into the pipeline. For example, a key principle of the Alzheimer’s Association’s grant funding is to give all good and viable ideas a chance – to fund the basic science that will uncover whether the idea is worth further investigation. If only we had more dollars with which to fund research projects. Donations can be made through our Web site – www.alz.org.

The need for more resources in this fight is clear. The Alzheimer’s Association is confident that we will defeat Alzheimer’s disease. How fast we do it is directly related to the level of investment. In order to follow through on recent advances and get more new ideas into the pipeline, we need (1) more research dollars for Alzheimer’s disease, (2) more volunteers for clinical studies. Again, people can find out how to get involved at www.alz.org.

Wyeth Enbrel: A Potential Breakthrough Treatment for Alzheimer's

2007-06-26T05:39:00.000-07:00

Researchers in the USA have presented startling data which demonstrated that treatment with Amgen’s anti-inflammatory Enbrel reversed some of the early symptoms of Alzheimer's disease in a patient in a matter of minutes.

A study, published in the Journal of Neuroinflammation and carried out by researchers at the University of California, featured the case of an Alzheimer’s patient, an 81-year-old doctor. It showed that within 10 minutes of being injected in the spine with the rheumatology and psoriasis treatment Enbrel (etanercept), which is also marketed by Wyeth, the doctor could remember facts such as the year, day of the week and the state he lived in. Before the injection, he could not recall this information and after the treatment, he was “noticeably calmer, less frustrated and more attentive,'' the authors of the study say.

The authors of the study, Edward Tobinick and Hyman Gross, said that the efficacy of Enbrel delivered by perispinal administration for Alzheimer's disease over a period of six months has been previously reported in a pilot study, but this report “details rapid cognitive improvement, beginning within minutes”.

In an accompanying article, journal editor Sue Griffin, from the University of Arkansas, said the study was an exciting breakthrough, which provided a greater understanding of the disease. “It is unprecedented that we can see cognitive and behavioural improvement in a patient with established dementia within minutes of therapeutic intervention,” she claimed. Dr Griffin added that “even though this report predominantly discusses a single patient, it is of significant scientific interest because of the potential insight it may give into the processes involved in the brain dysfunction of Alzheimer’s.”

Prof Tobinick noted that Enbrel and other tumour necrosis factor-alpha treatments may interrupt the inflammation that produces beta amyloid, which causes Alzheimer's characteristic tangles in the brain. The report noted that these drugs “are worthy of further investigation, and may lead to earlier therapeutic intervention which may have the potential to favourably affect the natural history of Alzheimer's disease."
~ PharmaTimes

Hear more reactions to this treatment through the Alzheimer's Association forum.

Mom is getting better with Enbrel for Alzheimer's Treatments

2007-06-26T05:35:00.000-07:00

This comment was posted by the daughter of a woman who has been treated with Enbrel for her Alzheimer's by Dr. Tobinick

Comment:
Submitted by Felicia on Thu, 05/08/2008 - 5:39pm.

My Mom has now recieved 10 injections. The improvements in her are miraculous, especially her Activities of Daily Living. She is happier, more inquisitive, talkative, singing again, helping with things around the house (or at least trying), instead of sitting quietly in her chair all day and night with nothing to live for, becoming a zombie, losing the ability to walk, communicate, and think for herself, and SHE IS HAPPY AGAIN, what could be more important than that! It was such a helpless situation, and now we are seeing her come back to life! We are so fortunate for having been able to receive these treatments, but we need help getting approval for this off-label treatment. The doctor who discovered this treatment has been under a lot of scrutiny, and Amgen, the makers of the drug, won't back the treatment. They say there is no scientific data, but Dr. Tobinick did the small study, in hopes that a clinical trial would be funded. Now, through his private practice and some trained doctors in other states, there are approximately 70 patients receiving this treatment with success. The effective rate overall is 90%. Amgen won't do a trial because of other interests, and because the patent will run out by the time a clinical trial is done, which takes 4 or 5 years. They would lose money if they funded the trial and then the drug goes generic. We need the public to know that this is real, no matter what the "Big Pharma" companies would like you to believe. We need to show them that our Loved Ones lives are more important than the fact that they have invested in other drugs for AD, that aren't even proven to work yet. Please see mine and others youtube videos of our Loved Ones who are getting better. http://www.youtube.com/famc17 and http://www.youtube.com/user/tumates and http://www.youtube.com/user/armoandleo11 It's exciting, yet frustrating at the same time because it is expensive and we need it approved by medicare or insurance or we won't be able to continue. This is NOT a cure, it is a treatment that needs to continue for the rest of my Mom's life. Please let your doctors know about this treatment, and see if they will be trained. Dr. Tobinicks website is: http://www.nrimed.com/, where you can see more video testimonials, and where you can print the study and peer-reviewed journals regarding the study which you can show your doctors. Most doctors either haven't heard of it, or aren't looking at it because there was no clinical trial. It's a vicious circle we need to find a way around.

Thanks, Felicia