I have a close friend who was diagnosed with Early-Onset Alzheimer's disease at the age of 57. Each Saturday morning he begins a 24 hour shift of trying to stay out of trouble while his wife works a 'round the clock shift at her job. Since he is still in the early to moderate stage of the disease she is able to leave him for periods of time without too much worry. Also, finances dictate that she needs to keep her job as a long as possible as they are now down to one income.

For my friend, however, those 24 hours can feel like a month. He doesn't go anywhere, fearing something bad might happen. Instead he performs simple chores around the house, things that won't get him into too much mischief. His jobs include running the sweeper, making the bed, etc.

By 10 a.m. he puts on the news, not really to watch it, but just to go through the motions. He used to love watching college football Saturday afternoons, but sadly, that activity has just become one more thing he has crossed off his "don't bother" list.

By noon feelings of isolation and boredom begin to surround him. He has recently told me that these feelings have intensified during the past winter months. His house feels more closed up with the windows and doors always shut trying to keep it warm. Naturally, he can't help but finally start searching for something to do.

Never intentionally meaning to do anything wrong, it seems that the laws of physics are stacked against him.

For instance, there's a faucet in his garage that has a small leak. It has a magnetic pull calling him, almost demanding that he come to fix it. He fights the urge to the point where he has hung a large sign above it saying: "Don't even think about it!"

When a person has this disease they often live in constant fear of doing something wrong. The average person thinks that staying out of trouble is an easy task, but for my friend it's nearly impossible. I'm not talking about anything drastic (although you never know). It usually comes down to simple projects spiraling out of control.

He believes that, for caregivers, it may be like them having a loyal pet that's so well behaved that they don't worry about them doing anything out of line. Then the day comes when they are left at home alone for an unusually long period of time; upon arriving home it is discovered that possibly this "pet" is not as trustworthy as originally thought! There are reams of toilet paper spread from one end of the house to the other.

According to him, his long Saturdays aren't good for him, but then Sunday through Friday are not that great either.

*[This story is based on many people we have met during our memory support work. It is fiction but grounded in the reality of Alzheimer’s.]

I wish there was someone I could talk to about this. Everyone here is very nice to us, they take good care of Bill, but they don’t really know him; I mean they don’t know the real man inside. What can I do? No one wants to hear the stories about Bill, about how he was a high school football star and a hero in the war. I just wish there was some way I could tell the people here, could show them what a strong, brave man Bill is.

            I still remember the feeling of shock when he asked me to wear his letterman jacket our senior year, how that jacket felt in my hands, how it smelled of leather and wool. It was dark blue wool with white leather sleeves. Bill’s name and number were embroidered on the back, right under the roaring lion. I used to sleep with that jacket every night my senior year in high school. Even though he was the star quarterback, Bill was still shy. He told me later that he was self conscious because his ears stuck out and turned red when he got embarrassed. I didn’t care about football, I was a book worm. It was Bill’s smile that got me, he just kind of lights up when he grins. I used to love it, too, when he would pass me in the hall and give me that grin and then a wink, made my heart beat fast!

            I didn’t know what to feel when Bill joined the Marines right after high school. We were just getting serious and he was going to leave me. I felt angry and sad and proud all at the same time. Everyone was joining up or getting drafted then. Of course in those days, we didn’t question anything; we just did what we were told. Bill was in Italy and then he was sent to Germany. I could not believe it when his mother called me to tell me that Billy had run into a little trouble over there. A little trouble? He almost died saving the company medic, Bob Brooks. Bob was hit bad and Bill picked him up out of a fox hole and ran through the middle of a battle and carried him to safety. Bob went on to become a doctor, and to save a lot of lives himself. Now, Dr. Bob is dead and no one remembers what my Bill did, how he saved that doctor’s life, how he won medals for his bravery. Bill told me later it was all that running, dodging and weaving that he did on the football field that saved them both. He didn’t think it was bravery; Bill just chalked it up to speed and luck.

            And the Lord knows Bill was quick on his feet and in his mind. They used to call him jackrabbit. People said he was so fast, he could throw the football and then catch his own pass! Even though he was quick in everything, Bill had patience for other people. He helped a lot of kids, boys that would have gone bad if it wasn’t for Bill. They come sometimes to visit us here, but they look so sad when they see how Bill is now. Of course, it’s hard for our own kids to visit, too. They don’t know how to handle seeing their dad like this. I know it’s hard for them, but they have to understand that there father is still there, inside. I don’t know what to say to them, to help them understand this. I don’t know what to say to anybody.

            I know that people sometimes think I am mean because I won’t help Bill button his shirt and I won’t let anyone feed him. It’s just that I know Bill, and I know that he feels better about himself when he can do these things on his own. I am trying to be as patient with Bill as he always was with other people. I know that he will never get any better, but I want him to put up a fight. I want us to put up a fight for as long as we can.

Now Bill is beginning to wake up from his nap. He needs to sit up straighter in his wheel chair, and he needs to wipe his chin. Oh, he sees me now. There is that old grin and Lord, feel my heart, he winked at me! My Bill, my hero. 

Being a more or less full-time caregiver doesn’t mean you know how to entertain your caregivee more or less full-time. One of the questions that’s often bandied about on the Alzheimer spouse message board I frequent is: Why do they doze in chairs so much?

Part of the answer is that it’s tiring to live with a semi-functional brain. Navigating the world with only a half or so of a full deck is a surefire battery depleter, so chair-dozing is a pretty normal response. But there’s another theory, and it’s one with which I strongly concur—It’s boring when you can’t do anything. Dozing might often be a simple symptom of not knowing what else to do.

In the litany of losses we see in our stricken spouses, a fading of ambition seems to come early. Nevertheless, it is a classic trick of the Alzheimer mind to sporadically pulse with short bursts of what we figured was gone forever. What happened with Jeff is that about a month or so ago, he latched onto the notion that he would go to law school.

I am not aware that Jeff ever entertained thoughts of law during his functional life, so it’s been a funny thing to come upon us during system failure. But there it was, and he brought it up when we had lunch with his sister one day. What did she think, Jeff wanted to know. Would he make a good lawyer? 

There is hardly anyone with a greater gift for equanimity than Jeff’s sister, and she gently expressed her doubts about whether he would enjoy the shark-like thinking that the study of law (as she understood it) aimed to instill. This put it to rest, but only for that meal. Because for inexplicable reasons, the notion of going to law school had latched onto one of the few neurons in his brain that could retain something. So he kept bringing it up.

“Today,” I would say, as I threaded him into his coat, “we’re going to go to the bank, get lunch, then buy cat food.”

“Then,” said Jeff, with a purposeful look, “law school.” 

More than a few times, I had to stuff my thoughts under the nearest pillow and sit on them, because what was the point? As caregivers, we aim to make life pleasant, not be the reality check-point. How could it help for me to say “Yo...you can’t read, you can’t drive, you can’t follow a movie plot, and you can’t put your pants on straight...how are you going to go to law school?”

No, reality was out, and so was just plain “no.” Just plain “no,” would make me the bad guy. There had to be something other than “no.” There was, as it turns out. There was the LSAT. For all his deficits, Jeff is still capable of understanding (once I pointed it out,) that there is a first hurdle, and it’s the standardized test. So, last week, we made a field trip to Barnes & Noble, and bought the Princeton Review’s strategy guide for the LSAT.

It seems to have been a $24.37 investment that paid off. He could make no sense of the book on his own, as I knew he could not. After a couple days of staring at it, he asked for help. Tests were not a problem he insisted. He had, after all, taken the SAT about two-dozen times over the past fifty years. (Don’t ask me where this idea came from, as we all know that no one wants to take the SAT more than twice, and kissing it goodbye at 17 is always a relief.)

So, we sat down together and cracked the book. I cut to the chase and read the first logic question. A veterinarian wishes to transport animals in four cages, each of which has one upper and one lower berth. There are three male animals. Female animals will occupy the top berths of cages #1 and #2. No cage can contain two males. Therefore, which of the following arrangements (A,B,C,D, or E,) is untenable? Being me, I sketched out my little cage diagram and circled a response. But Jeff selected choice F: Throw the LSAT book on the floor. 

“Do you want to stomp on it now?” I asked. He chuckled. “No, I’m going to celebrate. Because I never have to take the LSAT.” 

Then I helped him find the bathroom, which was located, as always, right across the hall (where it’s been for the past 25 years.) That’s the last I’ve heard of law school. 

It is of the utmost importance to find a qualified attorney to help you plan for the future, particularly when a debilitating illness such as Alzheimer’s enters the picture. But what do you look for, and how do you go about looking?

You can start by checking with either of two associations for elder-law attorneys. The National Elder Law Foundation (NELF) is an American Bar Association-certified organization that certifies the elder-law specialty among practitioners, who are known officially by the designation “CELA” (for “certified elder-law attorney”).

According to NELF, a CELA must be knowledgeable in the following subjects:

• Health and long-term care planning.
• Public benefits (including Medicare, Medicaid and Social Security).
• Surrogate decision-making (including powers of attorney and guardianship).
• Older persons’ legal capacity.
• The conservation, disposition and administration of the older person’s estate (including wills, trust and probate of an estate).

Finding the right elder-law attorney is very important to planning for your future.

You can find a complete directory of CELAs in the United States at the foundation’s website (www.nelf.org), or look for a CELA in your area using their search engine.

The National Academy of Elder Law Attorneys (NAELA) “is a professional association of over 4,300 attorneys who are dedicated to improving the quality of legal services provided to seniors and people with special needs,” according to the organization’s website. It also has a searchable directory of elder-law attorneys throughout the United States, including CELAs, at its website (www.naela.org).

When do you contact an attorney? The sooner, the better. There may be more options available to you and your loved one at the early stages of Alzheimer’s than later on.

Asking the Right Questions
NAELA and NELF recommend meeting with the attorney of your choice armed with lots of questions. Before you agree to meet with an attorney, NAELA suggests that you ask some basic questions:

• How long have you been in practice?
• Does your practice have a particular area of focus?
• How long have you been focused on that particular area?
• What percentage of your practice is devoted to elder law?
• Is there a fee for an initial consultation, and if so, how much is it?
• Are you a member of the National Academy of Elder Law Attorneys and/or are you a CELA?
• What documentation should I bring with me to the initial consultation?

Once you’ve found an elder-law attorney, it’s time for the initial consultation. Here you’ll explain your specifics in some detail to give the attorney the scope of your situation. Before you meet with the attorney, answer as many of the following questions as you can:

• What is the current stage of the illness?
• What needs are currently being met?
• To what extent can the person with Alzheimer’s care for him/herself?
• Is the person with Alzheimer’s capable of handling financial affairs?
• Can the person live at home now, and at what point will assistance with daily activities become necessary?
• Does the person have disabilities?
• Does insurance or entitlement cover the disabilities in question?
• What are the person’s overall financial needs?
• Does this person qualify for federal or state benefits? If so, which ones?
• What are your needs as a caregiver? Are you disabled, or can you foresee becoming disabled?
• In the event of your disability or death, who will provide care for the person with Alzheimer’s?
• Are there other family members who require caregiving, such as a child with disabilities? What are their needs?
• The needs of the person with Alzheimer’s may deplete the available resources. How will other family members react if this happens?
  

  Knowing the right questions to ask can help you find the right elder-law attorney.

• Are you the only caregiver, or are there other family members or friends who are willing to help? How much help can they provide? Do they have the time and the expertise to do so? Can they be trained to handle problems that may arise?
• Is there someone you can trust sufficiently to name them as holder of power of attorney or health care proxy? Will they act in the best interests of the person with Alzheimer’s?
• You may need outside help, particularly if no family members or friends can help. Who can help you in that event? How much will it cost to hire help?
• What are your long-term goals, and what are your long-term goals for the person with Alzheimer’s?
• What are the person’s assets and liabilities? (You will need to carefully compile an inventory all assets, all sources of income, and all liabilities.)

You may need an attorney’s help answering some of these questions. But whether you can answer them yourself or need help, these questions need to be answered soon.

Also, be sure you understand how your attorney’s fee structure works. Ask how the firm bills and how often. Some attorneys ask for a retainer before beginning work, which is money paid in advance to the law firm in order to begin work.

Why a CELA?
Seeking an attorney certified in elder law (a CELA) brings with it certain assurances, according to NELF. A CELA has met rigorous criteria for certification, including:

• Being licensed to practice law in at least one state or the District of Columbia.
• Practicing law for five years prior to applying for CELA certification, and must still be in practice.
• Being in good standing with the bars of every place in which they are licensed.
• Spending at least 16 hours per week practicing elder law during the three years before they applied, and having handled at least 60 elder law matters during that time with specific targets defined by NELF.
• Continuing legal education, with 45 hours logged in the preceding three years.
• Having five references from attorneys familiar with the applicant’s competence and qualifications in elder law.
• Passing a full-day certification examination.

In addition to these criteria for certification, there are expectations for a CELA’s practice that NELF specifies. Among these:

• The capability to recognize issues of concern, including the abuse, neglect or exploitation of older persons; insurance; housing; long-term care; employment; and retirement.
• Familiarity with professional and non-legal resources and services available to meet the needs of older persons, whether public or private.
• Capability to recognize professional conduct and ethical issues that arise as a matter of course during representation.

Hiring an elder-law attorney is worth taking the time to do it right. These guidelines should help you do just that, which is all the more important if you’re dealing with other pressing issues besides legal matters.

Bernard A. Krooks, J.D., CPA, LL.M (in taxation), CELA is past president and founding member of the N.Y. chapter of the National Academy of Elder Law Attorneys and a nationally known and widely quoted expert on elder law. For more information, visit the firm’s website at www.littmankrooks.com.

Finding Your Attorney Without the Internet
If you don’t have a computer or Internet access, here are some recommendations for finding a qualified attorney to help you:

• Get a referral: You may have friends, colleagues, etc., who have used the services of an elder-law attorney and can provide a recommendation to you. Don’t hesitate to ask.
  

  You don't necessarily need a computer to find the right attorney for you.

• Yellow Pages: Your local directory should have listings for the elder law specialty. If not, check the ads, and don’t be afraid to ask the questions listed in this article to find out if the attorney is a good fit for your needs.
• Your state’s bar association: State bars also keep directories of members in good standing. Again, don’t be shy about asking questions of any attorney you contact.

Source: www.ALZinfo.org. Author: Sam Gaines, Edited by: Bernard A. Krooks, J.D., CPA, LLM, Preserving Your Memory: The Magazine of Health and Hope; Spring 2011.

By Bernard A. Krooks,
Certified Elder Law Attorney

During our discussions with clients, we learn about many misconceptions they have and previous errors they have made in their long-term care planning. I would like to share a few of those with you.

Believing Medicaid myths.
Relying on information from family members or friends, many people have a misunderstanding of how the Medicaid program works. Medicaid is a state program funded in part by the federal government. It is the only government program that pays for long-term care. Each state has its own Medicaid rules and regulations; including the District of Columbia, there are 51 Medicaid programs. In some states, Medicaid procedures even vary by county. Thus, it is very important for seniors and their families to consult with an experienced elder-law attorney familiar with the Medicaid program in the state and county in which the Medicaid application is to be filed.

Thinking it’s too late to plan.
It is never too late to plan. In fact, it is possible to begin planning even after the individual has entered a nursing home, although you are always much better off if you plan ahead. Even if someone has already been diagnosed with Alzheimer’s disease, they may be able to sign advance directives if the disease is in an early stage. If the disease has progressed, then planning may still be possible through a guardianship proceeding. With proper planning it is possible to protect a significant portion of the person’s assets.

Giving away assets too early.
These assets belong to the senior or the person with disabilities. Don’t put these individuals at risk by making premature gifts to family members. Premature gifts can also result in tax and Medicaid problems, particularly in light of changes to the Medicaid laws now in effect as the result of the federal Deficit Reduction Act of 2005.

Ignoring exempt transfers.
Some transfers do not result in periods of Medicaid ineligibility. These include certain transfers to children with disabilities, caregiver children, some siblings, certain exempt trusts for persons with disabilities under the age of 65 and certain pooled trusts for persons with disabilities.

Planning for long-term care should not be put off, but it’s never too late to start planning.

Failing to take advantage of spousal protections.
These protections include maximizing the Community Spouse Resource Allowance, exercising the right of “spousal refusal,” purchasing exempt resources or converting countable resources to income.

Applying for Medicaid too early.
Applying for Medicaid within 5 years of making a gift can result in a period of ineligibility that will not start until the senior or person with disabilities is in the nursing home—with no funds available to pay for his or her care. While the rules are complex, there are still ways to protect assets even if a gift has been made within the 5-year look-back period.

Applying for Medicaid too late.
Putting this necessity off can result in spending funds that could have been protected by proper planning. While Medicaid is the payer of last resort, in many cases it must be considered in order to maintain the quality of life of the well spouse and family.

Failing to keep good records.
This has become a critical issue in light of recent Medicaid changes. A Medicaid eligibility worker will thoroughly examine all Medicaid applications. The applicant should retain records to support all items listed on the application, document the applicant’s assets as of the date of admission into the nursing home and verify the disposition of the applicant’s assets for the entire look-back period.

Not considering long-term care insurance.
All those who are healthy and who can afford the premiums should consider long-term care insurance. By purchasing long-term care insurance, you may have more options available to you in the event of a chronic illness. If someone has already been diagnosed with Alzheimer’s disease, it is too late for that person to purchase long-term care insurance. However, this should serve as a wake-up call to other family members that considering long-term care insurance is a vital part of your overall financial and estate plan.

Not getting expert help.
Medicaid asset protection planning is complicated. Most people will require this planning only once during their lives. Because a great deal is at stake, it is wise to consult an experienced, certified elder-law attorney when long-term care is necessary. The attorneys’ fees are an investment, not an expense.

Don’t repeat the mistakes others have made; instead, learn from them. Make sure you do what is necessary to protect your family’s assets.

Bernard A. Krooks, J.D., CPA, LL.M (in taxation), CELA, is immediate past president and founding member of the N.Y. chapter of the National Academy of Elder Law Attorneys and a nationally known, widely quoted expert on elder law. For more information, visit the firm’s website at www.littmankrooks.com.

Source: www.ALZinfo.org. Author: Bernard A. Krooks, Esq., Preserving Your Memory: The Magazine of Health and Hope; Spring 2010.

If you’re on pins and needles because of worry, stop it! You will always question yourself. Caregivers will always panic about whether the job they’re doing is adequate. As I mentioned before, learn from your mistakes. This is not a science. Patients vary from one to another.

Taking care of a memory-impaired person is exhausting and emotionally draining. You’ll know when you’re about to hit the wall. Don’t argue with yourself, find a way to take a break or everything will start to overwhelm you. When you get a chance to get away, go, but try not to spend too much time alone. When I had time to escape, one of my main goals was to refrain from repeating myself 30 times a night. I looked for normal conversation, in which I was not required to answer the same question more then twice.

Sadly, you might notice that your phone rings less and less and when you do see old friends, they don’t seem to know what to say anymore. Don’t take it personally. The average person doesn’t have a notion as to what you’re going through. At first you will still be invited to go here and there, but after declining time and time again “because it’s so hard to get away,” those invitations start becoming extremely scarce. You’ll find yourself outside the loop. The social life you once enjoyed has most likely diminished to just a few outings a month at best. Make the most of them. Try to surround yourself with positive people. The responsibility of caring for someone with Alzheimer’s is enormous! You need an interruption from all the depression and strain this disease entails.

The endurance and strength required is tremendous. You have to reach deep inside yourself and pull that endurance out. It’s in there, believe me.

Fortunately, I have a sister who helped me when she was able and constantly told me I was doing a terrific job. If nobody is telling you this, say it to yourself. Heck, yell it out your front door! I’m not going to kid you, this was the hardest thing I ever did in my life, but I wouldn’t have had it any other way. By keeping my dad in a run-of-the-mill routine lifestyle during his disease, I was amazed by how well he managed.

Your Alzheimer’s patient needs to be on a simple beaten path. The sooner you establish this familiar trail, the easier it will be to care for your memory-impaired friend.

Forget about any mistakes you make. You’re better off looking toward the humor in the situation. It’s there.

Always remember: it’s always better to laugh than to cry.

More than 40 percent of elderly women ages 85 and over had symptoms of Alzheimer's disease or other serious problems with thinking and memory, according to a new report. The findings are important, since the numbers of these "oldest old," the fastest growing segment of the United States population, are expected to increase by 40 percent in the next decade alone.

“Screening for cognitive disorders in the oldest old is of the utmost importance, especially in high-risk groups,” the authors, from the University of California at San Francisco conclude.

They looked at nearly 1,300 women ages 85 and up, all part of the Women Cognitive Impairment Study of Exceptional Aging, an ongoing study that has followed thousands of women living in Baltimore, Minneapolis, Portland, Ore., and Pennsylvania for many years. Twenty seven percent were over 90. Six hundred thirty four of the women, or 41 percent, had serious memory and thinking problems, while the remaining 665 tested normal on cognitive exams.

Alzheimer's and other forms of dementia accounted for many of the cognitive problems in these elderly women. Most of those with dementia had Alzheimer's or a mix of Alzheimer's and vascular dementia, caused by blood vessel disease affecting the brain. About 12 percent had vascular dementia alone. Mild cognitive impairment, a serious form of memory loss that can lead to Alzheimer's, was also common among this group.

Alzheimer's and other cognitive problems were more common in women over 90, and in those with fewer years of schooling or a history or stroke or depression. Compared with their mentally sharper peers, women with dementia were also more likely to live in a  nursing home and to carry the APOE-E4 gene, a gene that increases the risk of Alzheimer's. The findings appeared in Archives of Neurology, a journal from the American Medical Association.

Research indicates that the incidence of Alzheimer's and other types of dementia almost doubles with every 5 years of age after age 65. About 2 to 3 percent of people ages 65 to 75 have dementia, compared to 35 percent in those 85 and older.

The prevalence of mild cognitive impairment was higher in women over 90 (24.5 percent) than in women 85 to 89 (22.7 percent). Most, but not all, had serious memory problems. 

The authors note that understanding Alzheimer's and related problems in the elderly is critical for public health planning, as the population continues to age and the oldest old become more common and continue to grow older.

By ALZinfo.org, The Alzheimer's Information Site. Reviewed by William J. Netzer, Ph.D., Fisher Center for Alzheimer's Research Foundation at The Rockefeller University.

Source: Impairment, Dementia, and Their Subtypes in Oldest Old Women." Archives of Neurology, Vol 68 (Number 5), May 9, 2011, pages 631 to 636.

Many studies suggest that daily activities like walking may help keep the memory sharp. Now a growing number of studies show that a daily walk can lead to positive physical changes in the brain as well.

Psychologists report that older adults who walked three times a week had enlargements in the hippocampus, an area of the brain critical for memory. The hippocampus tends to shrink in older adults, setting the stage for memory loss that in some cases leads to Alzheimer’s disease. But in seniors who remain physically fit, the hippocampus tends to be larger than those who are sedentary. Active seniors, as a group, also tend to have a lower risk of memory problems and Alzheimer’s disease.

The brain changes were small: the hippocampus increased in volume by 2 percent. But that enlargement translates into one to two years of brain wasting that would occur from normal aging. The findings were published in the Proceedings of the National Academy of Science.

In the study, 120 men and women who were, on average, in their mid-60s were assigned to one of two groups. Half walked around a track for three times a week, along with warm-up and cool-down exercises, for up to 40 minutes at a stretch. The aerobic routines were designed to increase heart rate. The others did less aerobic stretching and toning exercises, including yoga and resistance training with bands.

A year later, brain scans revealed that the walkers had expansion in the hippocampus. In the others, the hippocampus shrunk by 1 to 2 percent. Both groups had improvements in their spatial memory, which helps us to do things like navigate traffic and find our way through the store. But it improved more in the walking group.

Last year, researchers showed that walking six to nine miles a week may help ward off the memory loss of aging. And other studies have suggested that activities like walking or ballroom dancing may help to prevent the onset of Alzheimer’s and other types of dementia or help those in the early stages of the disease. In mice that have been bred to develop a disease that resembles Alzheimer’s, vigorous activity helped diminish the buildup of the plaques and in the brains of humans with the disease.

In the current study, the exercise was more modest, only 40 minutes or less a few times a week. Yet the benefits were significant.

"We think of the atrophy of the hippocampus in later life as almost inevitable," said Kirk Erickson, the lead author and a professor of psychology at the University of Pittsburgh.

Art Kramer, another author and psychologist at the University of Illinois, added, "The results of our study are particularly interesting in that they suggest that even modest amounts of exercise by sedentary older adults can lead to substantial improvements in memory and brain health."

By ALZinfo.org, The Alzheimer's Information Site. Reviewed by William J. Netzer, Ph.D., Fisher Center for Alzheimer's Research Foundation at The Rockefeller University

Source:

Kirk I. Erickson, Michelle W. Voss, Ruchika Shaurya Prakash, et al: “Exercise Training Increases Size of Hippocampus and Improves Memory.” Proceedings of the National Academy of Sciences. January 31, 2011.

About managing holiday confusion...

I’m not much of a natural when it comes to hosting holiday meals. Nor did I get much practice as we raised our kids since Jeff and I both had moms nearby who were quick to welcome any and all extended family on Thanksgiving and Christmas.

In a well-crafted narrative, this next paragraph would detail how, in the face of necessity, my previously untapped talent suddenly blossomed. But my life has failed to hew to any semblance of craftsmanship, so don’t expect it to start now. The truth: As a hostess I still stink. Nevertheless, while necessity may not in my case be the mother of invention, it’s still managed to breed a willing spirit. So here I go again. Christmas dinner at my house this year.

A big part of the necessity at play, as you’ve probably guessed, is Jeff’s changing needs. While Jeff’s mom died a few years ago, mine is still managing family crowds of 20+ with as much aplomb as ever, and Thanksgiving was at her house this year. These days though, those 20+ people are a little hard on Jeff.

It is a feature of Alzheimer’s in general, and Posterior Cortical Atrophy especially, that processing visual stimulation can be a major drain on the damaged brain’s battery pack, and 17 more people than usual, milling around and about while chatting and carrying cheese and crackers is plenty more visual stimulation than normal. Hence, on Thanksgiving, Jeff’s energy level plummeted like a cordless drill trying to tap cinderblocks. It's too bad I can't keep an extra battery on standby like I do with my Makita drill.

This kind of drained battery takes all night to recharge...

At about six p.m. I realized I had no choice but to take him home and put him to bed early.

Here at home he has less trouble escaping the chaos. There’s his downstairs room, there’s our upstairs room...and there’s his lifelong gift at tuning out the zany stimuli of our busy family. So for this Christmas, and for who knows how long into the future, it may be easiest for me to offer an open door, food and libations, and a come-when-you-can policy.

Will we wash dishes or be ecologically incorrect and have a stack of pretty holiday paper plates by the food? I don’t know. In whichever case, I will not serve Jeff’s food on anything bright and festive in gold, red, and green. He cannot, you see, distinguish his food from the plate pattern. More likely than not, I’ll hand him his Yuletide fare in a plain-colored bowl, and he’ll mix it into a goulash before it gets to his mouth. He will not get his Christmas Chardonnay in a stemmed goblet, he’ll get it in an easy to grasp IKEA juice glass that won’t befuddle his fingers.

Presentation, you see, comes in a distant second to simplifying caregiving. Because if there’s one thing I’m not, it’s Martha Stewart. And if there’s one thing Jeff’s not, it’s a guest of Martha. And if there’s one thing I’m okay with, it’s all of the above.

           One of the best ideas I ever heard for helping caregivers was from Denise Brown (the creator of the web site, Caregiving!). Denise encourages her readers to create a “Job Jar.” She asks caregivers to write on slips of papers those things that would be most helpful to them. It might be half a day taking over for them in their caregiving duties, or it might be doing some laundry, or going grocery shopping, bringing over a meal, cleaning the bathroom, etc. Just any job that caregivers do every day that someone could take over for them as a gift. Putting the jobs on slips of paper in a jar gives friends and family a chance to decide which jobs they could reasonably help with. Instead of saying to a caregiver, “Is there anything I can do to help?" using the Job Jar ensures that the caregiver gets the help that they really want and really need but may not ever ask for.
             Another really great idea is for the people who are living with Alzheimer’s and dementia. This is an experience that we create that can be used all throughout the year, but it is especially poignant during the holidays. Here is our idea: We collect stories from someone’s life and turn them into a book of stories to be read aloud by friends and family. We make sure that the print is large enough for older people to read and we also print the stories on card stock, as these pages are easier to turn. We place the stories in a three ring binder. The stories can be accompanied by photos or with a CD of holiday music. These stories can be very simple, perhaps just a snapshot of an event. We encourage you to do this to help the people you care for share the memories and the stories from their lives.
             One last easy and very enjoyable tip is to put together a recipe book of family holiday favorites. Again, these recipes are printed in very large font. Reading the recipes aloud to each other is a great way to rekindle memories. And don’t forget to sing some of your favorite holiday songs together!