Sunday, August 28, 2011

Protecting People with Special Needs: Guardianship of Young Adults

Most parents are conflicted when their children reach their 18th birthday.  For many families, that means their child will soon be leaving home for college, a new job, or the military.  For parents of children with developmental disabilities, it can be very scary when that child turns 18, because the law presumes an 18-year-old is an adult with the legal rights and responsibilities that come with adulthood.  When a child turns18, the parent no longer has the legal authority to make decisions for that child.

Joshua, a good-looking young man with a developmental disability, turned 18 six months ago.  Josh is friendly and outgoing.  They say he never met a stranger.  Josh, who functions intellectually on the level of a second grader, has been known to give his lunch money away on more than one occasion.  Josh does not tell his parents when he is feeling sick, and once cut his arm and used the wall to stop the bleeding. His parents came to me because they are conflicted about whether to seek guardianship of Josh.

Guardianship is a legal relationship created by a court. The guardian has the legal authority to make decisions about the healthcare and living arrangements of another person, called a ward.  The guardian also has the duty to look out for the welfare of the ward.  The relationship is very much like that of parent and child, where the law presumes that the ward is not able to make his or her own decisions about his or her healthcare or living arrangements.

Whether to seek a guardianship can be a difficult decision because parents want their children to gain independence, to learn to function in the world on their own and to make their own decisions.  When someone becomes a ward, they lose the legal ability to make healthcare decisions, to choose where to live, to enter into contracts, and to marry. 

Guardianship in Georgia is granted if the adult “lacks significant capacity to make or communicate significant responsible decisions” about his or her health or safety.  In order to decide whether to grant a guardianship, the court reviews a petition filed by the proposed guardian, appoints a professional to evaluate the proposed ward, and then holds a hearing in the courthouse to gather evidence about the decision-making ability of the proposed ward.

Josh’s parents ultimately decided that they need to become Josh’s guardians in order to continue to make decisions about his healthcare and where he lives, but also to ensure that he would not be enticed into signing any contracts that might bind him to spending money he doesn’t have.  Although they would like for Josh to get married some day, I explained that they can petition the court if and when Josh meets the right person and they believe he is mature enough to marry.

Please give our office a call if you have questions about whether you might need to seek guardianship of a young adult.

Next week, we’ll talk about when guardianship of minors, when that  might be necessary and how to choose guardians for your minor children.

Sunday, July 31, 2011

Caring for Children with Special Needs: Combating Autism Reauthorization Act of 2011

 Caring for Children with Special Needs

Combating Autism Reauthorization Act of 2011

You can’t turn on the television or radio without hearing about the negotiations – or lack of negotiations- in Congress regarding the looming budget crisis.  We are all concerned about whether our elected representatives in Washington can come to a compromise that will help the country out of the current debt crisis.  Of great concern to those of us who work with families who have family members with special needs is whether, and how, the few programs left to support these families will be affected.

Assuming Congress gets through these negotiations and gets back to work on other  important issues, Congress has the opportunity to address a significant issue that the United States faces today.  That issue is that the number of persons diagnosed as being on the Autism spectrum is increasing at an alarming rate.  It is estimated that 1.5 million Americans are currently on the Autism spectrum.  That number is expected to increase by 10-17% annually. 

A growing concern is that the number of autistic children entering adulthood is also increasing rapidly.   By 2023, the number of autistic children entering adulthood is estimated to be 380,000.  The cost of care for these adults is said to be around $27 million, or about the budget of the state of Tennessee. 

On August 3, 2011, the U.S. Senate Committee on Health, Education, Labor and Pensions (HELP) is scheduled to meet for hearings on the Reauthorization of the Combating Autism Act, originally passed in 2006.  The Combating Autism Act allocated $950 million dollars over the five year period for the Centers for Disease Control (CDC), National Institutes of Health (NIH), and other governmental agencies to conduct research on the autism spectrum.  The Act required the Director of NIH to develop and implement a strategic plan for autism research.  If the Act is not reauthorized by September 30, 2011, the federal commitment will disappear.

The current bill, named the Combating Autism Reauthorization Act (CARA), would allocate the federal funding of $1billion and create a National Institute of Spectrum Disorders Research within the NIH.

If CARA is not passed, research on the spectrum will likely be thrown into disorder.  We cannot afford to let this bill die.  Research into the reasons for the disorders on the spectrum, and especially research into treatment and therapies, is crucial. 

If you would like to find out more about CARA, and how you might be able to help make sure this Act is passed, see













Sunday, July 10, 2011

Planning For a Loved One With Special Needs

 If the last few years have taught us anything, it is that life is not predictable.   The economic crash seemed to come out of nowhere.  The weather appears to be totally weird and unpredictable, with tornadoes and floods occurring with fierce and dangerous intensity.

So, too, our health and physical wellbeing are not entirely predictable.  Despite our best efforts to eat healthy food and exercise regularly, we can have a car accident or suffer a bad reaction to medication and become ill or disabled.

For some of us, our financial resources and health insurance may not be enough to cover our care needs.  When that happens, we sometimes have to seek governmental assistance to provide for our healthcare.

Many of my clients had no idea they would end up depending on Supplemental Security Insurance (SSI) or Medicaid for assistance, but those progams can be a lifeline for those with disabilities and longterm care needs.

How can we plan for our loved ones and family members who are on governmental assistance programs?  How can we provide for their needs without jeopardizing their public benefits programs?

One way is to establish a special needs trust for the benefit of the person with a disability.  A special – or supplemental needs trust, as I’ll call it- is an entity established to hold assets so that those assets are available for  the needs of the person with a disability that are not provided by the governmental benefit.  The person with the disability is not the trustee, does not own the assets, and cannot control the assets, so the assets aren’t counted for purposes of qualifying for benefits.

SSI and Medicaid generally restrict the recipient of those programs from having more than about $2,000 in assets, but the assets in the trust aren’t calculated in that $2,000.  Most of the time, the trust is established by a parent or grandparent, but If the assets did not belong to the person with a disability to begin with, anyone can establish the supplemental needs trust and anyone can contribute assets to that trust.  The trust can be the recipient of gifts or inheritance.

We’ve discussed how to choose a trustee in previous blogposts,  but for a supplemental needs trust I usually recommend appointing a professional trustee to manage the assets in the trust.  The intricacies of public benefits programs can be daunting for most people, so even though they charge for the management,  professionals with experience with supplemental needs trusts can save money in the long run.

So, even though life seems unpredictable, you can at least plan for some of the supplemental needs of your loved one with a disability.


Sunday, July 3, 2011

When Bridget Came To Visit: On Being Prepared

 When Bridget came to visit, she wanted to take my blue and white teacups home with her.  They were shiny and pretty, and fit in her hand just perfectly.  Dick promised they would go to the mall and buy some teacups just like them.

Bridget was in the mid to late stages of Alzheimer’s disease when she and Dick first visited my office.  Dick, a wonderful, patient husband and caregiver to Bridget, was determined to be prepared for whatever legal and financial zingers might hit the couple.  Years before, after Bridget was first diagnosed with Cognitive Memory Impairment, Dick and Bridget had prepared living trusts, powers of attorneys, and healthcare directives.  They came to me to make a few changes to Dick’s living trust and financial power of attorney.   I always recommend that clients update advance directives and powers of attorney to avoid having someone decide that the documents are “stale” and, therefore, not valid.  We prepared new advance directives for Bridget and Dick.  On the day Bridget came to sign, she could not remember that the children whom she had nominated as agents were adults.  In fact, I’m really not sure she could remember who her children were.

With sadness, I told Dick that Bridget could not sign any documents that day.  We agreed to try another day, since those with dementia often have times when they are very alert, and other times when they are not.  Bridget never was able to sign her new advance directive, and soon went to stay in a wonderful memory care facility.   The health care and financial proxies she had already signed worked fine for her, and Dick was able to make her healthcare and financial decisions without any challenges.

Susan, on the other hand, had never executed advance directives for healthcare, financial powers of attorney, or any wills or trusts.  She didn’t think she needed to, since her husband made most of the financial decisions for the couple.  Her family did not push her to do any planning, since they thought it would upset her.  When I visited Susan at the nursing home after her husband died, she told me the nurses were stealing her underwear, she no longer recognized her family members, and she wondered why I was visiting her at work.   Susan swore like a sailor, and insisted that she would not sign “any g. . d. . . papers”, believing that I was trying to steal from her, too.

As a result, her family had to spend months and thousands of dollars to seek guardianship and conservatorship of Susan, a court proceeding which is expensive financially and emotionally for all involved. 

Many folks with Alzheimer’s and other dementias become paranoid and distrustful.  When they hit that stage, it is extremely difficult to get them to agree to do advance directives, financial powers of attorney, or wills.  Why would they agree to sign something that they believe allows folks to steal from them?

As an attorney, I preach that every adult needs to have an advance directive for healthcare, a financial power of attorney, and at least a basic will.   In Susan’s case, her fear of planning led to heartache and hardship for her family.   Could all of this expense and difficulty have been avoided by visiting an attorney’s office while Susan was able to plan for her and her family’s future?

As a footnote, I want to tell you all about Dick, Richard J. Farrell, whom I mentioned above.  Dick has written a book Alzheimer’s Caregiving about his life with Bridget, joys and trials of caregiving, and about his grief when Bridget died after living with Alzheimer’s for nearly 20 years.  Check out his website at to see how you can order a copy.


Sunday, June 26, 2011

Elder Abuse - It's Right Under Your Nose

 Sometimes bad things happen right under our noses, and we don’t want to – or can’t – see.  Elder abuse is like that – we can’t – or don’t want to admit that we see it.

June 15th was Elder Abuse Day, a day intended to draw our attention to a problem that is often ignored. The term “elder abuse” is often in the news, but what exactly is elder abuse?

The World Health Organization defines elder abuse as “a single, or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust which causes harm or distress to an older person.”

Elder abuse is not confined to the poor.  Mickey Rooney, the 90-year-old actor, has accused his 52-year-old stepson of abusing him and taking his money.  He testified before Congress about the growing problem of elder abuse.  

Just last week, I learned of two events which I characterize as elder abuse. 

The daughter of my client, Fred, used the Financial Power of Attorney her father had granted her to transfer almost all of his money into her own bank account.  Before she accomplished this feat, though, she had carefully isolated him from other relatives, friends, and even from me, his attorney.  The assisted living facility (ALF) where he lived was instructed not to allow him to see or talk with a laundry list of people.  In fact, almost everyone he knew was on that list.  The daughter was heard to swear at him, and call him foul and demeaning names.  She neglected to take him to the optometrist and audiologist, with the result that he could not hear or see, and was diagnosed with dementia. 

The other case also involved the caregiver daughter.  She physically abused her mother, and also transferred her mother’s money into her own account.

In both of the cases I described, the elder parent trusted their adult child to care for them in their time of need.  My client, Fred, had only one child, and he hoped and believed he could trust her completely.  He was sure that she had his best interests at heart when she told him that she would help him manage his money and would watch out for all of his healthcare needs.

Fred’s daughter had two documents that she used inappropriately to take advantage of Fred.  She used the fact that she had been named as his agent under an Advance Directive to limit access to her father, and she used a Financial Power of Attorney to transfer all of Fred’s money out of his bank accounts.

What can be done to help elders in these situations?  In Fred’s case, the signs were missed by those around him.  The ALF should have been suspicious of the daughter’s attempts to limit visits and phone calls from friends and relatives.  People in assisted living facilities are presumed to have the capacity to make their own decisions about whom they will visit.  ALF’s should respect the resident’s rights to communicate with whomever they wish, unless the resident has a guardian appointed by a court of law. Here is a link to an article by the State Bar of Georgia on Long-term care residents’ rights:

Those who witnessed the daughter call him names, could have intervened to ask Fred if he needed help or could have reported the daughter to Adult Protective Services.  Here is a link to the website for DHS:

Sometimes we have to be willing to see things we don’t want to see.

Sunday, June 19, 2011

Trust Me - Who Should Be My Trustee?

Once I convinced my client, Mary, that a trust is a safe, and not so scary, way to protect herself and her stuff during any incapacity, she wanted to know who could possibly serve as a backup trustee?   According to Mary, her daughter was a kind and loving person who would do everything she could to support her mother, but her daughter’s financial skills were somewhat suspect.  Mary’s son is a busy family man with a great job, but he seems too busy to help Mary now.

Who could she choose? 

First, what does a trustee do exactly?  A trustee is a fiduciary, which means that he or she has a legal or ethical duty regarding the management of property for another.  Although a trustee may have either the duty to manage the trust assets or the duty to distribute those assets, many trustees both manage and distribute.  A trustee is usually responsible for investing the assets in the trust, distributing those assets to the beneficiaries according to the trust terms, and making sure any required accountings are prepared and that taxes are paid when necessary.

A trustee can be an individual who is a family member or friend.  Parents often want their children to succeed them as trustee.  When deciding whether to have a child as a successor trustee – or when choosing which child – be sure to be realistic about your adult child’s financial abilities.  Make sure that the person you choose understands that the trust will be managed for the benefit of beneficiaries – and that the trustee might not be one of those beneficiaries.  Be aware that a trustee might have a conflict of interest if the trust assets will eventually pass in part or whole to the trustee or his or her family members.  Also, it is best not to choose someone who has financial problems such as large debts, a failing business, or a looming bankruptcy.  Someone with financial issues might be tempted to borrow or use trust assets for his or her own benefit, despite the terms of the trust.

A trustee can also be a professional individual, like a lawyer or CPA, who can be hired to serve as a trustee.  Trustees may charge a percentage of the assets in the trust, or an hourly fee for any time spent administering the trust.

Of course, a bank or trust company may also serve as a trustee.  Generally, a bank or trust company will have a trust department and will hire employees to serve as Trust Officers with primary responsibility for administering the trusts.  The bank or trust company will charge a fee – usually a percentage of trust funds – to serve in that capacity.  Many banks and trust companies will only serve as a trustee if the assets in the trust are whatever minimum amount the bank or trust company deems appropriate for their business.

You can also choose co-trustees who will work together to administer the trust.  Sometimes it makes sense to have a professional or corporate trustee along  with a family member.  In that case, the family member’s role might be to make sure the professional or corporate co-trustee is aware of the needs of the beneficiary and is making investment and distribution decisions appropriate to the circumstances.

The best way to choose a trustee is to start with a list of relatives, friends, business or professional people you know, and banks and trust companies, and think hard about their ability to manage money.  Think about their character and ethics, and choose the best from that list. 

Sunday, June 5, 2011

Trust Me, It's Like A Little Red Wagon


Trust Me, It's Like A Little Red Wagon

Mary, an independent, strong-willed woman all of her life, realized that she might need help managing her finances.  She came to me with concerns that her memory might be slipping a little, and she was afraid that she might forget to pay her bills.  After assuring her that she was fine, I encouraged her to consider placing her assets in a trust so that she could write her own rules for management of those assets.  Mary was skeptical.  “Trusts are way too complicated for me!  I don’t even know what a trust is. And who would be the trustee?” 

I explained that a trust is very much like that little red wagon you had when you were a kid.   I have a picture of my sister hauling me around in a red Radio Flyer wagon when I was about three years old, and I remember using that wagon to cart my Barbie dolls to the neighbor’s house.  I also remember that I was the boss of that wagon, and would only let my best friend, Paula, touch that wagon and the Barbies in it.

So, how is a trust like that wagon?

A wagon is a receptacle – a place to put your “stuff”.  When you were a kid, you probably put all of your important toys, and things you found by the side of the road, inside that wagon.  You took the handle of the wagon and pulled the “stuff” wherever you wanted it to go.  You could take things out of the wagon, or put new things in the wagon, whenever you wanted.  When you got tired, you put down the handle.  If you wanted, you could allow someone else to take the handle and haul your stuff for you.  You made the rules for your wagon.

A trust is like that.  You put your assets – your adult “stuff” – in the trust.  While you are alive and well, you can be the trustee.  The trustee is the person that puts the stuff in the trust, makes sure the stuff in the trust is taken good care of, and takes the stuff out of the trust whenever necessary.  When you no longer want to be the trustee, or you can no longer serve as trustee because of incapacity or death, someone else will pick up the handle and serve as the trustee. 

As the trust maker, you get to decide the rules of the trust.  Just like you could decide who got to pull your wagon, you get to decide who will be the trustee.  You can also decide who will benefit from the things in that trust and when they can benefit. 

Unlike the rules you made up as a child, though, the rules of the trust are written in a document so that the person serving as trustee knows the rules and must legally follow those rules. 

In the next blog post, I’ll discuss how to decide who should be the trustee – who can pull your little red wagon.

Sunday, May 22, 2011

Alternatives to the Joint Account: The Pros and Cons of a Power OF Attorney




So, if you’re telling me not to put my daughter on my accounts, what are the alternatives?  How can I be sure I will have someone to take care of my financial affairs if I’m not able to?

In my last post, I told the story of Mary and her daughter, Nancy.  I pointed out the pitfalls to having adult children – or other people- as joint owners on real estate and bank accounts.  I promised I would share some alternatives to joint accounts.

One alternative is to appoint someone as an agent under a financial power of attorney.  The agent is authorized to make financial decisions for you if you are not able to make decisions – or if you just don’t want to make those decisions any more.  A financial power of attorney can be for a one-time transaction – like buying or selling your home – or it can be for any and all financial transactions.  A financial power of attorney should be durable, meaning that it will still be in effect even if you no longer have the mental capacity at the time of the transaction.  

Some advantages are that if you become suddenly incapacitated, you have someone with the legal authority to step in and make your financial decisions while you are incapacitated.  In addition, if you are okay but just need  someone to help you make sense of information, your agent can discuss your financial affairs with your insurance company, your financial institutions or your CPA.  Your agent can then explain the information and help you understand  so that you can make your own decisions. You can also appoint an agent under power of attorney to have authority to sign checks for you if you need some help paying your bills.

What are some downsides to the financial power of attorney?  We sometimes call a power of attorney document a “blank check.”  When you appoint someone as your agent under power of attorney, you are giving them lots of power with no instructions on how to use that power.  Imagine giving someone a blank check and telling them to go out and buy you a house without telling them where you want to live or how much you have to spend.  Chances are that person would buy a house in a neighborhood where you had no desire to live at a price you couldn’t afford.  Giving someone the authority to spend your money without giving them instructions can be frustrating and dangerous for both you and your agent.

Another downside is that the financial power of attorney dies when you do. The agent under a financial power of attorney has absolutely no legal authority to handle your finances after your death.  That means that upon your death, there is no one with the legal authority to deal with your finances, and your family must often wait until the probate court judge appoints someone to administer your estate before they can access your bank accounts.

I generally recommend that clients have an agent named in a durable power of attorney for finances, but I also warn them to have a discussion with the agent about when it is appropriate to use the power, and to point out the limits of that power.

In my next post, we’ll talk about another alternative to the joint account – the living trust.


Saturday, May 14, 2011

Should I Add My Daughter to My Account?

Should I Add My Daughter to My Account?


Mary and her daughter, Nancy, were very close.  Mary was still able to make all of her financial decisions, and paid all of her bills on time each month.  Keeping a high bank balance gave Mary comfort that she would be able to access money whenever she needed it.  She was worried that she might “lose it” at some point, so she asked Nancy to become a signer on her bank account.  She and Nancy became joint owners of Mary’s bank account, although Nancy acknowledged that her mother was the real owner of that money.

Nancy was not quite as meticulous about her finances as her mother.  She had used the overdraft protection on her bank account on many occasions when she forgot to record her purchases in her check register, or when she needed something and didn’t have the money to pay for it.  Nancy’s bank account was in the same bank as the account she and Mary owned together.

One day, Nancy overdrew her bank account by a significant amount.  Per the rules of the bank, money was withdrawn from the joint account of Mary and Nancy.

When Mary checked her account online, she was horrified.  What had happened to her money?  She could not imagine how her bank balance had gotten so low and raced to the bank to get to the bottom of what was obviously the bank’s mistake.  When the bank employee explained that the money had been transferred to Nancy’s account to cover an overdraft, Mary was horrified.  She had no idea that by letting Nancy become a joint owner of her account, she had given Nancy the right to use all of her money. Mary immediately closed the account and transferred her money to another bank.

 Nancy had no idea that her mother would be liable for her overdraft, and was ashamed that her mother knew about her bad money habits.  Over time, she was able to pay her mother back.

Many older clients tell me they want to add their children to their accounts and to their real estate.  They tell me that they do that so they can avoid probate, and so that their children will be able to manage their money for them should they become incapacitated.

I rarely recommend joint accounts for people who are not married or in a committed relationship.  There are a couple of reasons why I think it is usually a very bad idea.  First, just as with Mary and Nancy, the assets in a joint account are deemed to be owned equally by either party and are available to the creditors, predators, and ex-spouses of both parties.  Second, at the death of a joint account owner, the asset belongs to the surviving joint owner.  Most of my clients have more than one child, and their wills almost always leave everything equally to each of their children.  Yet, when they jointly own an asset with only one child, that asset belongs to that child alone at the time of the death.  You may be relying on the generosity of the surviving child to share the proceeds with his or her siblings.  If there are more than two joint owners, the asset belongs to whomever is the last man standing. That means that if one child predeceases the parent, the asset will belong to the surviving child when the parent dies. Since most of my clients intend for their grandchildren to inherit their deceased parent’s share, this type of planning usually defeats the intent.

 Finally, the joint owner can take the whole asset whenever she wants because a joint owner can withdraw the entire amount in the  account without the consent of the other owners. 

In my next post, I’ll talk about ways to manage money during incapacity and avoid probate without using jointly owned accounts.Should I add my daughter to my account?


Thursday, February 10, 2011

Managing A Wild Ride to the Emergency Room – A Checklist

My father is a pretty independent guy.  He loves to tell us that when he was young, he served as a ranch hand for a summer. I can just see him, riding horses and herding cattle.  I guess his professional career was similar to that cowboy summer.  As a high school principal, he spent a lot of his time herding kids.  Even today, he is still kind of a tough old cowboy.
He hates to go to the doctor, and I don’t remember him ever going when we were kids.  A few years ago, though, after suffering for about a week, he was in such excruciating pain that he could not hold out any longer and had to go to the emergency room at his local small town hospital.  None of his children were in town that night, so he drove himself to the hospital.

Of course, this being a Saturday night in rural South Dakota, they could not treat him at that small hospital and were forced to send him on a wild ride in an air ambulance to a larger hospital a couple of hours from his home.  Once he arrived at the hospital, they determined that they did not need to keep him overnight and dumped him out on the street without a car to find his own hotel room.  Thankfully, my sister was able to find him and help him get a hotel room where he stayed until demanding to be returned home the next morning.  Now, I really don’t have any advice for how to force stubborn cowboys to let their kids know when they need help, but I recently attended an excellent – and very practical- presentation by Dr. Thomas Price, Chief of Medicine, Wesley Woods Geriatric Hospital, Assistant Program Director, Fellowship in Geriatric Medicine, Assistant Professor, Emory University School of Medicine, and Medical Director of the AG Rhodes Home at Wesley Woods, (he does wear a lot of hats) on what to do when your aging loved one may need to go to the hospital.

The presentation is packed with good advice, but I found Dr. Price’s instructions for preparing for a trip to the emergency room to be invaluable.  Now, maybe other people know instinctively what to do, but when one of my loved ones is sick enough to require a trip to the emergency room, I’m not sure I would be able to think clearly enough to gather what is necessary for the trip.  Here, then, is Dr. Price’s checklist for taking a loved one to the emergency room:

I’ve posted Dr. Price’s presentation in .pdf form on my website.  You can find it at

  • First Step
    • Go by ambulance or car?
      • If poorly responsive or in distress, call 911!
    • If by car, have someone drive you
      • Allows you to help mom
      • Prevents you from being distracted as a driver if mom vomits, gets worse
  • Preparing for the Trip
    • Mom’s Bag
      • Ziploc of all the medications she is currently taking in their bottles
      • Contact info for her primary care doctor and other specialists she sees
      • Insurance cards (Medicare, Medicaid)
      • A change of clothes (preferably a track suit or other easy to put on activewear)
      • Dentures, glasses, hearing aids!
  • Preparing for the Trip
    • Your Bag
      • Any medications you take (at least two days worth)
      • Copy of mom’s living will/advance directive/POA
      • A book (sudoku, crosswords, novel)
      • Cell phone and charger
      • One change of clothes
      • Hygiene supplies
      • Water, snacks, or sandwich
  • The Drive
    • Bring blanket, plastic bag (for emesis), towel
    • Be calm, say supportive things to mom
    • Sit with her in back seat

I’ve posted Dr. Price’s presentation in .pdf form on my website.  You can find it at

Wednesday, May 13, 2009

The Alzheimer's Project - Review of The Memory Loss Tapes

The Alzheimer’s Project
A Review of The Memory Loss Tapes

Like most Baby Boomers, I have a fear of developing Alzheimer’s Disease. As an Elder Law attorney, I witness the struggles of the adult children of parents who have Alzheimer’s Disease (AD) as they try to understand what is happening to their parent and wrestle with the best way to care for their parent as the parent slowly fades away.
The Alzheimer’s Project is intended to open a dialogue about Alzheimer’s Disease, to show the disease from several perspectives – that of the person who has AD, the children and young teenagers who have relatives with the disease, the scientists and doctors struggling to find treatments and a cure, and from the caregivers.
The Memory Loss Tapes, the first episode in the documentary series airing on HBO this week, is viewed from the perspective of those who have been diagnosed with AD. Each segment shows someone in varying stages of the disease, starting with Bessie who is in the very early stages of the disease and ending with Cliff’s death from complications from the disease.
Although much of this episode is frightening, much of it is happy, sad, and hopeful – often all at the same time.
We are first introduced to Bessie, an 87-year-old widow living in a small town in Wisconsin who was diagnosed with AD two months before her part of the documentary was filmed. Bessie is still living her normal life – for the most part. She lives by herself with her dog, Skipper, and still drives, cooks and performs with a singing group. She struggles to remember the words to songs and forgets the names of people she has known for years. Bessie is aware that she is forgetting things, but she is determined to continue the activities she has enjoyed for years. Although she understands there is no cure for the disease, she hopes for a couple more good years with donepezil, (known by the brand name, Aricept) a medication prescribed by her doctor.
Fannie, an 82-year-old widow in St. Louis, represents the second phase of the disease. Fannie’s segment is probably the most familiar and the most disturbing to those who must care for a loved one with AD, because Fannie has little awareness that she is suffering from AD and is irritated with those who try to keep her safe. When we first meet Fannie, it is three months since her diagnosis. Fannie’s doctor told her to quit driving, which she says makes her feel “inadequate” and “completely dependent on someone else.” Fannie takes an assessment test to determine whether she must stop driving. When asked to rate her driving ability, Fannie chooses Above Average. As part of the assessment, Fannie must take a driving test. It is frightening to watch as we see that Fannie cannot remember how to put the car in reverse, sees traffic signs in places where there are none and cannot figure out a right turn from a left turn. After the test, Fannie believes that she will be able to continue to drive. When Fannie is told that she can no longer drive, she is very upset and says that “they” are taking away her independence.
The Joe’s Blog part of the documentary was very difficult to watch. Joe, just 63 years old, was diagnosed with AD two years before the documentary was filmed. He writes a blog he calls Living with Alzheimer’s. Before developing AD, Joe was involved in the computer industry. He describes himself as having been a genius, involved in helping some of the computer companies become the largest in the world. Now, Joe gets lost in his own backyard and is afraid to go out of the house because he may not be able to find his way home. Indeed, when he takes his young granddaughter to the park, he forgets how to get out of the park. Thankfully, his granddaughter remembers how to get home.
Joe very candidly tells the camera that the medication he takes for AD killed his sexual appetite. During a visit to his psychologist, Joe describes the disease as being like someone shaving slices of him – like at the deli when they shave the meat and little scrapings and pieces come off. The most difficult part for the viewer is to see Joe talk about taking his own life when he gets too far along. Joe feels that he will soon reach the point when he will end his life and he buys a wooden box – presumably for his ashes – and shows it to his family.
Yolanda Santomartino, age 75, represents AD in the later stages. Yolanda slumps in her wheelchair, no longer able to walk or to sit up straight. She talks to herself in the mirror, believing that she is talking to someone else named Ruth. Yolanda gets tired of talking to Ruth through the “window” because Ruth does not talk back to her. Yolanda is frightened by a ribbon on her chair, which she believes is an animal, and becomes agitated when she thinks snakes are in her wheelchair. Her caregivers struggle to calm her, and often play along with her fears by trying to mash the snakes in her chair. Family members will feel the pain that Yolanda’s son feels when his mother does not recognize him when he is sitting next to her. As Yolanda cries, “This is no life.”
Woody Geist, Age 81, was diagnosed 14 years before this documentary was filmed. He lives in a Sunrise assisted living memory care facility, and spends most of his day wandering around, whistling, and trying to figure out where he is going. Despite the fact that he is married, he has a “girlfriend” at the assisted living. She refers to Woody as her husband.  Old home movies show Woody hamming it up in front of the camera, singing with a men’s acapella singing group. We rejoice with Woody when he appears at a performance of his old singing group, and, although he cannot remember any of the members of the group, he does remember the words to the songs. Woody’s favorite phrase is “We’re lucky. I am glad we can be together.”
Josephine Mickow, age 77, does not talk much anymore. She makes sounds and whistles, but we barely hear her speak.  She lives with her daughter in a small house in a rural area.  Her daughter’s spinning group put a fence around the perimeter of the yard and now Josephine wanders aimlessly in her yard fiddling with the fence, as though trying to get out of the yard. Her daughter gave up her job in the city to care for Josephine, and now just gets by making yarn from the llamas and alpacas she raises and selling her goods at shops in her area. The most difficult part of Josephine’s piece is when Josephine puts a pebble in her mouth and her daughter has to stick her fingers in Josephine’s mouth to pry the pebble out. Josephine was an artist, and still leaves little vignettes of vegetables, glasses, and other found objects around the house. Her daughter preserves these vignettes through photographs.
The final segment features Cliff Holman, age 79, who was diagnosed 6 years before the documentary. We meet Cliff in the last stages of AD, being cared for at home by his wife with help from hospice nurses. Cliff was a children’s entertainer called “Cousin Cliff”, and had a daily children’s television show. He gets agitated because he believes he has to get to the television station to do a show. His wife struggles knowing that in his living will he asked that his life not be prolonged by artificial means, but feeling that she does not want to lose him. In the end, Cliff is taken to a hospice facility and we watch his family say their last goodbyes and grieve with them when the hospice nurse nods her head and says “he’s gone.”
The last scene shows Bessie searching for her car, and the viewer knows that she has just begun this incredibly difficult and painful journey, with Bessie just slipping away until her life end like Cliff’s.
Although some people may find this part of the documentary series difficult to watch, I found some hope here. The families of those suffering with AD, though stressed and grieving, also found joy and happiness in taking care of their loved ones. Though they often described their loved one as slipping away, I found that each person retained some part of their personality throughout the stages of the disease. Even as Cliff is in the final stages, he is waving to the camera and saying “I’ll see you on smellivision.”

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