What Every Caregiver Must Know

©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

“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?

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

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

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

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

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

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

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.