Sunday, November 6, 2011


What a lovely week it's been -- death and dementia!

Actually, it's not as depressing as it sounds. As I reported earlier this week, the memorial service for the members of several grief groups was quite lovely and very comforting.

Today we went to a workshop on dementia, sponsored by Citizens Who Care, the support group for the frail elderly and their caregivers, on whose board Walt has served ever since his retirement. Walt had let me know about it a few weeks back and I said I definitely wanted to attend.

It's not that my mother is ready to be moved out of her house, but I want to be armed with all the information I can be when that time draws closer. And this was an excellent education forum. It was described as "a loving approach to dementia care -- communication, affirmative response and empowerment -- transforming the caregiving process from a burden into a fulfilling journey."

Linda Wayman is the author of a book called "A Loving Approach to Dementia Care" (we bought a copy).

I got a lot out of the day, the most important being that my mother isn't "there" yet, but also that she is on her way down a one-way street. Wayman had explanations for the way that people with dementia perceive the world and how best to handle them. Many of the things she spoke about I had already figured out and have been doing.

But I learned that Dementia is the fifth largest killer and within a few years will be the #1 killer of people in the United States, presumably because we have an aging population and it is generally older people who develop Dementia, which come with accompanying conditions which are life-threatening (like Alzheimer's patients whose body forgets how to eat, how to swallow, how to breathe).

(I also learned that officially, "dementia" is a symptom of a disease, she lists some 70 symptoms, actually, which may or may not add up to Alzheimer's and there is something called Lewy bodies, which I had never heard of which are bits of protein that grow inside nerve cells in Parkinson's patients and are connected to the tremors.)

She listed common problems of people with dementia -- confusion, disorientation, repetitive behaviors, difficulty tracking or processing information, spatial difficulties, anxiety, fear, paranoia, and short-term memory loss.

My mother definitely has the short-term memory loss. She described it a bit differently than I usually do. I visualize the brain as a computer hard drive and that as you age, the memory fills and so when it's called for, the more recent events have leaked out and the things that have been there the longest stay.

She described it as a series of boxes of files and that each incident gets put in the most recent box, but as dementia progresses, the newer boxes disappear so that what is left is the boxes from adolescence and childhood. It's the same idea as my computer brain.

But she also talked about how infections could trigger wide swings in the manifestation of the dementia. She talked about one of her patients who seemed fine the day before and the next day was totally out of control. Wayman recommended having her checked for a urinary tract infection. Sure enough, she had one and when she was given the medications to cure the UTI, her wild mood swings disappeared. That was something I never knew before.

She talked about how dementia patients lose their ability to track and process new information and may just turn off when they are overloaded with too much information. I realized that this is what my mother does whenever there is a group of people there. She gets up and cleans in the kitchen because she can't follow the conversation...and since she has always spent time in the kitchen, nobody is any the wiser.

It also explains why she gets unnaturally angry whenever I talk about anything having to do with the Internet, even if I'm not talking directly to her but answering someone's question.

The saddest thing, of course, is that there is no diagnosis, no treatment, no prevention and no cure. What there is is learning how to cope with the deterioration, whether rapid or slow, and how to maximize the approach to the patient and help them get the most out of their time and to make time spent with your loved one quality time for both of you.

I had discussed this after the Service of Remembrance the other night. I realized that a big problem with my mother is that she has nobody who checks in on her every day. She still volunteers at Hospice of Marin for a couple of hours each week, her stepson has dinner with her once a week. Peach and I do Cousins Day and she has a friend who stops by for coffee usually once a week, but she has no friends in the mobile home park where she lives. I call her, Jeri calls her, her other stepchildren call her. But I talked with Walt and told him that I'm going to start going there for lunch every week or so, both to spend more quality time with her while I have her, and also to have it be one more chance to check up on her.

Peach reports that it was difficult for her to play cards when Peach and her husband were there last week. We'll see how it is when we are there for Cousins Day this week. Maybe instead of playing cards, we can work puzzles, which she also loves to do. Or, down the road, find something else that will work and will be something we can do together.

Wayman shared her favorite Maya Angelou quote, which I liked too...

I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.

I want her to remember that I made her feel loved and cared for.


tiff said...

All good information. You're lucky to have had her for this long, and it's wonderful you're looking to make the reamaining years the best they can be.

Mary Z said...

We dealt with John's dad who had dementia (he died in 1997). John saw him daily, but it was still hard. It's something we're always aware of and, frankly, are watching for in each other. Frankly, it's scary as hell!

And in this area we have our wonderful Pat Summitt (iconic Tennessee women's basketball coach) who went public a few months ago with her diagnosis of early onset Alzheimer's. It will be a very public decline with, undoubtedly, lots of information becoming available. She's always been a class act, a consummate teacher - and she'll go out that way, too.

Harriet said...

It's been on my mind too, fueled perhaps by the ads for "Companions and Homemakers." It couldn't work for us, because my husband systematically ignored anyone who annoyed him, and it was my job to get rid of them -- therapists, care assistants, or whoever.

Another impossibility, from my point of view, was that I have no place for a live-in. But I wonder -- not that it's an issue just now -- whether having a part-time housekeeper, maybe three days a week, could pave the way for full time if it should become necessary.

My mother's sisters were all about. "oh, I don't need this," but eventually began saying, "where were you yesterday?"

Kari said...

Great post. You inspire me and have given me a whole bunch of good reminders & tips! I (and my mom) thank you. :)