A friend drew my attention to this 2008 article by Dr. Mary Newport. I’m not surprised that there may well be a nutritional cure for Alzheimer’s Disease. Take a look at the article and share your thoughts with me: http://wp.me/p1GuNw-3E

It’s been more than two years since Mother passed away and this year we celebrated a quiet Christmas with friends. The entry below highlights the moment when we knew something was terribly wrong with Mother’s memory. Up until this point, Mother had been able to mask her memory problems.

Christmas Day 2007

We won’t be putting a wreath on the door or draping the evergreens with lights this year. There will be no Christmas music in the air or a tree in the living room or warm, familiar smells wafting from the oven because I won’t be baking Grandma’s famous pecan pie. I did all that last year when Mother came over for Christmas, but she won’t be joining us this year.

Mother was having trouble living alone the last few years and had finally agreed to move to a retirement home where she would still enjoy living in a spacious apartment among her cherished furnishings and memories, but have the support of a caring staff to help her. She would still be able to sleep as long as she wanted each morning, putter around in her red bathrobe over coffee, read the newspaper until noon, attend exercise classes, play cards, watch a movie if she felt like it, and join the other residents for cocktails and dinner each evening in one of two swanky dining rooms.

It had been four months since she’d moved from her house. After two months in her new residence she offered, “Why don’t you and Steve move into my house and look after it for me. It makes no sense for you to rent a house and for mine to sit empty.”  So we did. Which is why we so looked forward to having her over for Christmas. She hadn’t been back to see her house since she’d moved out and we thought she’d really enjoy the homecoming.

I phoned her from work on December 24^th and said I’d be over by 5 pm. At 4:30 I arrived and checked her apartment. She wasn’t there. So I walked up to the lobby and there she was, waiting for dinner to be announced. She seemed surprised to see me, but went with me to her rooms. I helped her pack and as we made the 25-minute drive to the house she commented on all the holiday lights.

She sat in the living room watching Christmas specials with Steve while I made our traditional Christmas Eve fare, chili. The next morning we opened presents under the tree. We exchanged the red slippers I had bought to go with our matching red bathrobes that she had purchased 20 years ago and which had become our mother-daughter hallmark. During her afternoon nap, I put the finishing touches on the turkey, dressing, green bean casserole, potatoes, and gravy. We ate at 5 pm and I took her “home” about 8:30.

Mother seemed to have had a nice time, though she’d been distant at times. She’d asked, “Is this my house?” When I said, “Yes, does it look familiar?” she’d replied, “Sort of.”

The next day at work I received a call from Mother. “Barbara, what time are you coming for me?”

“Oh, I didn’t realize I was coming over today.”

“Yes, to get me for Christmas!”

“But Mother, Christmas was yesterday.”

There was a pause on the other end of the line. “You mean I missed Christmas?”

Thanksgiving 2007

When we sold our house in Denver and went overseas our plan, when we returned to the States, had been to relocate near Mother. That way we could visit her often and spend the holidays together.  The first several years we were together, I made nice, traditional turkey dinners for Thanksgiving and Christmas. When Mother moved to assisted living and no longer remembered the significance of the holidays, we would join her there for holiday meals.

A few months before her Alzheimer’s was diagnosed she had moved to a very nice senior residence nearby.  She decided to spend Thanksgiving with my brother and his family in Southern California. So we obtained her airfare, helped her pack, and drove her to the airport. We checked her in and, since we couldn’t escort her through security to the proper gate, we requested wheelchair assistance for her. My brother Dewey met her in LA.

While she was there she seemed distant, Dewey’s wife reported.  She would follow him to the door when he left for work and then go back to her bedroom. She showed little interest in conversation or activities. We used the opportunity to fly to Seattle to spend Thanksgiving with our children and grandchildren – a much-needed and welcomed break.

Thanksgiving 2008

Thanksgiving 2008

The following year Dewey came up for Thanksgiving and we joined Mother at her assisted-living residence for their lovely and plentiful dinner. We particularly enjoyed the meal because the facility never charged for the meals family members shared with the residents. We only had to let them know we wanted to stay and places would be set for us. Of course, in this case, we had to sign up in advance for seating. Although Mother didn’t seem to realize quite what Thanksgiving was, she was pleased to see us. We didn’t know it at the time but that was our last Thanksgiving together.

I have been a subscriber to Wordsmith.org’s A.Word.A.Day e-newsletter for a several years. Today’s word – anosognosia, a noun meaning “unawareness of one’s disease, disability, or a defect” – made me wonder whether suffers of Alzheimer’s disease were aware of their memory loss and, if so, to what degree. My online research brought up an article on the AlzOnline Caregiver Support Online site that addresses those questions and more. The article’s called Anosognosia (Unawareness of Decline or Difficulties), prepared by Leilani Doty, PhD, Director, University of Florida Cognitive & Memory Disorder Clinics.

Looking at the Anosognosia Rating Scale copied below, I was able to recall incidents in Mother’s decline that correlated with the four categories, though the ones that stand out the most were the times she angrily insisted that she had no memory problems at all. The fact that she had forgotten to pay the water and waste disposal bills for a number of months only surfaced when she received notice that these services were to be suspended and even then she denied ever having been in arrears.

Anosognosia Rating Scale

1. Easily admits memory loss
2. Admits (sometimes inconsistently) to small amount of memory loss
3. Not aware of any impairment in memory
4. Angrily insists that no memory problem exists

The article also helps to identify the range of self-awareness the person experiences, further illustrated by examples of coping strategies which can include making excuses and confabulation. Confabulation is not a lie but a condition where a gap in a person’s memory is replaced by a falsification that he or she believes to be true.

Most helpful are the sections that follow on Caregiver Challenges and Interaction Tips which give examples of how to approach, interact and speak to someone who has anosognosia.  If only I had seen these tips at the time – they would have greatly smoothed our day-to-day interactions.

Ruth D. Watkins-Leech tells us that her memoir, You Have to Laugh or Else You’ll Cry, was written “to let others who have loved ones with Alzheimer’s disease know they are not alone” and that help is available for both the loved one and the caregiver. The Introduction and Addendum include the warning signs of Alzheimer’s and reference online help and information sites. But the centerpiece of the story is Aunt Alice, whom Ms. Watkins-Leech cared for during the last four years of Alice’s life.

Writing in the first person, in an easy, conversational style, Ms. Watkins-Leech begins each chapter with a joke that shows a lighter side of aging, like memory loss and driving issues, with a few surprises thrown in. She then leads the reader through the last few years of her Aunt Alice’s life, with frequent flashbacks capturing incidents that help to frame Alice’s personality and character. It is during these earlier episodes that the author suggests that Alice’s responses and behaviors might have been indicators of her developing Alzheimer’s disease.

The chapters provide snapshots of Alice, first at her husband’s funeral, then coping with the loss of her mobile home, living with family and moving into a succession of assisted living residences. As Alice’s physical needs increase and her judgment and disposition worsen, the author takes on more and more responsibility for Alice’s care.

This story honestly addresses the many concerns of the Alzheimer’s patient, as well as those of the caregivers – oftentimes family members who find themselves coping with a situation they could never have anticipated.  Having gone through similar experiences in caring for my mother with Alzheimer’s disease, the core elements of Ms. Watkins-Leech’s story ring true to my own. The sections that dealt with having to move Alice into assisted living especially resonated with me as we, too, had to face the fact that Mother could no longer manage alone and that assisted living was the best option for her.

The sequence of events in the story have universal appeal and Nevada County, California, residents will especially appreciate material in the Addendum which identifies local facilities with memory care units.

I would certainly recommend this book to anyone with a loved one suffering with Alzheimer’s or other dementias, even if they are not a caregiver. It will help them to understand the challenges facing both the loved one and the caregiver and give them the necessary background to give the caregiver the emotional support they so deserve.

Any reservations I may have deal with secondary matters. The lack of page numbers made sections in the book awkward to reference, though such navigation would be less of an issue in an electronic edition. Also, the cost of the book should be considered. It is laudable that the author is donating portions of the proceeds to three Alzheimer’s organizations, but the price seems a bit high for a book of this length.

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You Have to Laugh or Else You’ll Cry by Ruth D. Watkins-Leech, (c) 2010, non-fiction, 62 pages, memoir recounting her experiences caring for her aunt  with Alzheimer’s disease, $10, available in both paper and ebook format on Smashwords.com .

The 21-minute HBO presentation on Identifying Mild cognitive impairment features Ronald Petersen, M.D., Ph.D., the Alzheimer’s Association Medical and Scientific Advisory Council Chair. Dr. Peterson “explains mild cognitive impairment and highlights the importance of distinguishing among the various dementias that can occur with aging.” It is interesting to note that Dr. Petersen was the physician who diagnosed former President Ronald Regan with Alzheimer’s.

The video gives two case studies of patients with dementia and discusses the differences between Alzheimer’s and other dementias. The first patient has another form of dementia – Lewy bodies. He is concerned about his memory because he loses his train of thought midstream and knows that this is new for him. The second patient was followed for 6-10 years in this study. He forgets last names and is aware he can’t remember them as he used to. His wife says he used to think ahead, but now he thinks in the past.

The video also provides some interesting statistical information, including one that states of those over 71-years-old who develop dementia:

70% have Alzheimer’s,
17 % have Vascular Dementia, and
13% have other dementias, including Lewy bodies.

I found this video particularly interesting in that these men admit that they are experiencing memory problems. Mother, however, never admitted that her memory had changed at all.

Today’s (Monday, 9/26/11) The Union newspaper features Kristy Paul, a Grass Valley, CA, area resident since 2005, who works with people experiencing all kinds of memory loss, including dementia and early to moderate Alzheimer’s disease. Her business, Mindful Memories, uses activity booklets to help clients reconnect with memories that she says are not really lost, just hidden. Paul is a certified Ashby Memory Method (AMM) provider who received her training through the Alzheimer’s Innovation Institute. Read the full article for details and contact information. (No link to the article is currently available.)

Continuing with Mother’s progression into Stage 3 of Alzheimer’s disease, we begin to notice that she was experiencing additional difficulties. While she didn’t seem to have all the problems cited on the Alzheimer’s Association website, such as coming up with the right word or name, remembering names when introduced to new people, having greater problems performing tasks in social settings, or forgetting what she had just read, she did start misplacing objects and experienced increasing trouble planning and organizing items.

One of the more disturbing incidents with misplacing items happened one day when Steve and I returned from a late afternoon walk. I came into the kitchen for some water and found Mother in a tizzy because she couldn’t find her evening glass of wine.

Trying to be helpful, I asked, “Where did you go after you poured it? Maybe you took it with you into the laundry room and put it down there.”

“No. I didn’t go anywhere,” she insisted. ”I just poured it, put the carafe back in the fridge, turned around, and it was gone!”

“Let me look,” I offered, and took a quick walk through the house anyway. I returned empty-handed.

I’ve had good luck finding things by just standing in one place and looking carefully around, so I did that. But there was no wine glass – full or empty – in sight. All I could see was my yellow plastic iced-tea glass sitting in the middle of the counter where I’d left it before our walk. On a whim, I looked inside. I saw something dark. I sniffed. Wine!

Relieved, I said, “Here’s your wine, Mother.”  Then I took a wine glass from shelf, held it up and ceremonially emptied the contents of the plastic glass into it.

But she was not at all impressed. She gave me the dirtiest look and said, “You did that! You hid my wine!”

“But how could I?  I just got home!” Suddenly inspiration struck and I felt like Monk, the world’s greatest detective. “Here’s what happened,” I said. “You were thinking of something else when you poured the wine. You just grabbed the nearest glass, poured the wine, pushed the glass back from the edge of the counter, and put the decanter away. When you turned around you were expecting to find your usual glass of wine and, of course, didn’t. It could happen to anyone.” But she wasn’t buying that explanation. She was sure I had done something. So she poured the wine down the drain and stormed out of the room.

I turned to Steve, who had wisely stayed out of the fray, and asked him to make a note of the incident on his calendar. There had been a few other oddities and it was time to start documenting them.

The September 2011 AARP Bulletin has two interesting articles on caregivers that caught my eye. The first, on page 6, “Looking for Grannies as Caregivers” highlights Rent-a-Grandma, a Los Angeles-based employment service that hires women age 50 and up to work as caregivers for children and older adults.

The second, The Caregiver’s Dilemma on page 10, discusses the very real problems experienced by a number of boomers who both work and care for their elders. To get a feeling for the number of those involved, the article cites an AARP study showing that “in 2009, 42.1 million U.S. family caregivers were caring for an adult with limitations, with 61.6 million providing care at some time during the year” and estimates the value of this unpaid labor to be close to $450 billion – an increase of $75 billion from 2007!  The article goes on to discuss both the dilemmas facing employees when they must schedule time off to care for their loved ones and the loss of productivity the employers experience. It offers helpful suggestions for maintaining balance.

In my case, I was blessed with a supportive, self-employed husband who was both willing and able to assist with Mother’s care.  When living with Mother became too difficult, we rented a house two miles away and he would check on her once or twice during the day to be sure she was all right. In the summer, for example, she would become hot and turn on the air conditioning; later in the afternoon she’d be cold, forget how to adjust the thermostat, and open all the doors and windows to warm up! Steve would stop by and adjust the temperature while he was there.

And I was able to find a job that allowed the flexibility I needed to take Mother to her appointments.  My first boss said he didn’t care when I was in the office as long as I got the work done. My second boss was also caring for his elderly father and so completely understood the demands on my time. Neither of them seemed to mind Mother’s occasional phone calls to the office.  And I was able to arrange Mother’s appointments to fit into my work schedule.

My daughter and I formed the Phyllis Memory Team and participated last Saturday, Sept. 10, 2011 in the Alzheimer’s Memory Walk in Seattle. Many thanks to our supporters! Here are some photos.

Phyllis Memory Team

We checked in and got our t-shirts. Then we picked up our flowers – purple for those who had lost a loved one to Alzheimer’s. There were yellow and two other colors for those who had Alzheimer’s disease, for those caring for those with Alzheimer’s and for those who knew someone with it.

Here we are, all ready to start the walk!

A view from the middle of the walk. Corporations supported with their teams.

Flash mob entertains.

At the end of the two-mile walk, we were entertained with a flash mob dance. The weather was sunny and warm. It was very encouraging to see so many supporters.