I Love This Stuff

I don't really have the expertise to write this page, but I'm going to write it anyway.

Yesterday I took my mother's meds for next week over to her.   She was the last in a list of errands I was running around town, the last stop of which was at CVS to get her some lipstick, since she's used the lipstick I bought about 3 months ago (I can't even imagine using up a lipstick.  I can't remember the last time I wore any!)

ANYWAY, I was listening to NPR as I drove around and as I was approaching Atria, there was a podcast about words.  I was drawn into it by a woman named Susan Schaller who has written a book called "A Man Without Words."   It's the story of a 27 year old man she met in a sign language class.  He had no words.  He didn't know what language was.  He had no concept of "sound." He saw people interacting with each other and he mimicked them, but he didn't know why. He just thought he was stupid because he couldn't figure out what they were doing.

Hearing her tell about her methods of trying to get him to understand that everything has a name, and the big a-HA moment when he "got it" sounded almost like a quote out of The Miracle Worker, and Annie Sullivan's work trying to get the concept of words through to Helen Keller, and the flood of communication that resulted from that breakthrough.

The interview morphed into one with a guy named Charles Fernyhough, a Brit (of course--who else but someone British would have a name like Fernyhough?) who studied Natural Sciences and Developmental Psychology, with emphasis on child development.

He talked about the relationship between words and concepts.  He gave as an example a rectangular room, painted all white.  You put a mouse in the room and put a treat in one corner and once he learns how to go to that corner he's fine.   But if you pick him up and spin him around and putting him back, he doesn't have a clue in which direction to go.

If you paint one wall blue he still can only find the treat 50% of the time.  Though the mouse can see color, he doesn't know the concept of using that as a clue to find his treat.

Then he talked about children and how they don't make this connection either until they are about 6.  Though children younger than 6 are very verbal, they haven't yet developed the concept of a relationship between things. But around 6, all the synapses are firing and they know objects, they know colors and they know directions and can put all of those concepts together.  

"The toy is to the left of the blue wall" would mean nothing to Lacie, for example, even though she may know colors and directions, but doesn't understand how you can use one in relation to the other. but Bri should be able to figure it out.

I sat there fascinated because I was wondering if Fernyhough had ever applied his theory to people at the end of life.  I have been noticing this vocabulary/concept disconnect with my mother for months.

The plant is looking sick.  Water will help the plant look better again.  But that does not translate into "I will go put some water on the plant."

Likewise, "that silver pitcher is tarnished.  I need silver polish."  But having a jar of silver polish sitting next to the pitcher does not translate into "I can use this polish to polish that pitcher."  The silver polish has been sitting there for about 10 months now and the pitcher is still tarnished.   (I could polish it, of course, but this is an experiment for me!)

I see this over and over with her and had not thought to relate it to toddler behavior until I heard the podcast yesterday. As she loses more and more words, she loses more and more connections.  She can't figure out how to make a hair appointment any more,  I discovered yesterday.

In fact, I was so fascinated by what he was saying that I looked up Fernyhough's web page and actually wrote to him to ask what he thought of my theory.   He'll probably think I don't know what I'm talking about but...hey...maybe I'll open up a whole new area of investigation for him.  But more likely I'll never hear from him at all.

Day 21 -- Happiness is realizing your granddaughter looks like a Frozen princess

(I actually watched all of Frozen today...the plot makes more sense without small children in the room singing and dancing and talking!)

Dementia Day

Today was a dementia day, but in a good way.

I have come to look forward to our dementia/Alzheimers support group meetings.  It's a small group, but the discussions are very helpful.  The group was a little smaller than usual this week because the spouse of one of the members had died.  We knew the end was near and I'm sure that in many respects the death was a relief, but our hearts go out to all the family.

Sometimes the subjects discussed give one pause.  A new members was there about a parent who had a stroke (which nobody knew until there was an MRI) which has resulted in symptoms of moderate Alzheimers, to the point where family members, even the spouse, are not recognized any more. What is scary about this is that the victim is not that much older than Walt and I are and this thing came unexpectedly, from out of nowhere.  It always makes you think about how fragile this life we have is.

I suspect that when one develops Alzheimers, whether gradually or more suddenly, the victim him/herself has the easiest time of it.  The more the disease progresses, the more they retreat into their own little world and it is left to the well members of the family to deal with all of the problems surrounding the disease.

One of the members of the group and I stood in the parking lot and talked for awhile after the meeting.  First time that has happened.  She looks forward to returning and learning more about the conditions and how to help herself.

I was home for an hour after the meeting and then had to get to Atria to pick my mother up for her doctor's appointment.  It amazes me how little (i.e., none) resistance she had to this appointment. Everytime I have suggested she might want to see her doctor for such-and-such, she gets that coy, flirty tone and says she'll go to the doctor when she's feeling better (or when she really has a problem).

But Atria gave her a form that had to be filled out by her doctor for her annual exam and so she didn't complain, except many times in the exam room about how much she hated doctors, how she hated putting on a gown, how she hated pills, how she hoped she didn't have to come back again for at least a year, etc.

But she got along well with the doctor who, of course, didn't believe she was really 94 years old.  (That always starts any first meeting out well.)   Unlike the gerontologist I took her to, she took her time did everything I hoped she would do, and filled out the form.  And other than hating doctors in general, my mother seemed to like this one.  The best thing about having my mother with the same doctor I am, is that I can actually send her e-mail, which I had not been able to do because of the SNAFU in setting up her e-mail account which apparently nobody up the food chain had ever been able to fix for me.  Even going to the "big guy" (God) was no good.  Apparently even He can't tinker with Kaiser e-mail accounts.

But now I can direct questions (if any) to her doctor via e-mail using my account.

We're going to try a better system of making sure she takes her meds.   Dr. A. suggested turning the task over to Atria, but that would involve another thousand-plus and she only has to take four pills a day.  There is no reason why I can't make sure that happens. 

I didn't go back to Atria with her, but just let her off when we got back.  I will go back in a couple of days to pick up her laundry and bring it home to wash.

Even though dementia was the subject most strongly on my mind today, it was a good day and the day is ending on a good note.

Turns Out it Wasn't So Bad

The morning started with my second visit to the dementia support group.  I didn't have anything traumatic to talk about this time, but just sharing information with others in the group about frustrations, practical suggestions, and reading material was very helpful.

The two facilitators make certain that everyone has a chance to be heard and keep the discussion going as long as necessary.  It also helps that one of the two is someone I have known for more than 20 years and had no idea was involved with this group.

Listening to others' stories is always so helpful, realizing that I have it pretty easy.  Others are dealing with advanced alzheimers, one is dealing with a patient who is terminal and may die at any moment.  One is taking care of a parent with dementia and a sibling with mental deficits.  One moved to a facility like Atria because of the activities offered, which seemed to be terrific for the spouse with dementia, but the spouse wants to do nothing but sit in the apartment 24/7.  Won't even go to the dining room for meals.  That's slightly worse than my mother.

Of all of these people, I think I'm the only one who does not have my loved one in house with me.  I can get away and take time for myself, which has been stressed over and over again is the most important part of things when you are in this situation.

I got a lot of support for how I'm dealing with my mother right now and it was stressed the importance of getting her evaluated, which I know I should do, but it's going to be a battle.  One interesting part of this was the discussion of various medical providers, some of whom I know and one of whom in particular I was warned against as someone who should no longer work with patients like this.  Horror stories were shared.  This is someone I have known, with all of my work within the local medical community.  But the stories did not come as a surprise.

Following the meeting, I headed across town to meet a friend for lunch.  This was someone I have not seen in several years, though we live in the same town.  We just both have busy schedules and our paths don't cross.  But I met her in the parking lot of the supermarket last week and we decided we should get caught up.

A few months back, I had another meeting scheduled with someone I had not seen in years.  I was looking forward to getting caught up with her and hearing about her life now.  An hour after we sat down, she said she had to leave to go to another appointment.  In that hour, she did not ask one question about me, but told me about her, her kids (whom I don't know), her grandkids (whom I don't know), her siblings, her job, and her neighbors.  As I walked her to the car, she said "next time you'll have to tell me about you."  Given that we seem to see each other every 5 years, I'm not going to hold my breath.

About half an hour into my lunch today, I was having visions of a replay of the previous lunch.  It was 30 minutes solid without a single "and how are you doing these days?" 

The problem with these long-term friendships ... and I'm sure I'm guilty of it too ... is that your memory of the friend you have not seen in many years is that they know your entire family.  If you have a large family, and the interrelationships are complex, the listener very quickly gets lost in all the minutae.  I couldn't remember today whether this person was a sister, a daughter, or a granddaughter.  I couldn't remember who had done what to whom.  The young children who had been in grammar school the last time we saw each other are now setting up famlies with spouses or significant others and birthin' babies.  By the end of the first half hour, my head was swimming and I was sorry that I hadn't ordered wine with my meal!

After about 45 minutes there was a lull in the conversation and I was asked "how about you?  how are all your kids?"  It was MY turn.   Fortunately, I had just had the experience of domination a conversation about people that my dining companion didn't know, so I kept it short (in fact, we never even got to Ned, let alone Tom!), but we did get into my mother and her situation.  As it turns out, we shared experiences of dementia and were both familiar with Atria, and suddenly the conversation became a real conversation.  We sat there for another hour chatting like we used to chat in years past and it was really fun.  We didn't talk about family so much as just things that we remembered together.  Turns out that we had both taken Viking trips and it was fun comparing notes, the good and the bad.  I loved that.

Living mostly like a hermit, which I do most days (other than going to Atria all the time), I may have lost the art of conversation.  Maybe I found a piece of it today.

Actually, yesterday I had lunch with another friend, one who likes to talk about show biz things and we had a really good conversation.

Tomorrow is lunch #3 with a friend, but we always get along well, so I'm not concerned about that one--this is the friend I lunch with once a month at Olive Garden, though now that she has retired, after about 15 years of Olive Garden lunches, we are doing Davis lunches for awhile.

Friday I'll lunch at Atria, rounding out a perfect lunch week!

Being in the Moment

A cousin of sorts (I can't keep straight 2nd cousins and once removed cousins and any other qualifier that goes with family relationships....and even if I could I can't remember just how this young woman is related to me, whether the daughter or granddaughter of a cousin, or what. I just know she's family) today sent me a link to a video called something like "12 minutes with Alzheimers," in which two people, a newswoman and a caretaker for a wife with Alzheimers, were fitted with various assists to help them understand what it's like to live with Alzheimers, as they attempted to complete a handful of simple tasks, like finding a tie and putting it on, setting the table, finding a white sweater, etc.

They had something on their eyes to mimic visual impairments like macular degeneration or cataracts, their hands were wrapped in rubber gloves fitted with things that would mimic arthritis, they had things put in their shoes to give them the feel of someone with arthritis or other problems of the feet, and they wore earphones to keep a low-level noise in their heads at all times.  It was amazing how quickly they mimicked the previously videotaped movements of persons with Alzheimers, experienced extreme frustration, and began to understand what it was like living in that world.

There were other videos on YouTube that I watched, identifying the signs of dementia and Alzheimers and tips for coping with it. One of them talked about the importance of being in the moment when dealing with someone with dementia.  The videos were wonderful in helping me understand why, for example, making any decision is not only difficult but seemingly impossible for my mother. They helped me understand why so often what someone says to her doesn't seem to penetrate at all. They made me realize that the time for helping her to understand anything of great importance to me has passed and is never going to come back, and I have to let that go.

In truth, I think caregivers of loved ones with dementia are truly heroes.  It's a 24/7 job, with no vacations, coffee breaks, or time outs to be alone, without making arrangements ahead of time to be sure that your loved one will not be unsupervised.  I am so fortunate to have found Atria, a place that she really seems to like and where I feel she is as safe as she can be, while still living independently, yet only 5 minutes from my house where I can (and do) see her several times a week.

I am also so fortunate that my mother hasn't retreated completely into the world from which there is no return.  She can have a reasonable conversation (many times!), she can handle her own activities of daily living, she still recognizes people.  It's just that the memory loss is worsening.  She is afraid of becoming like her mother (who also had dementia, though she died in her 80s, I think) or her sister (who was in the Alzheimers world when she died at age 81). She is enough aware of her memory problems that she is embarrassed that anybody should know how bad it is -- though she herself doesn't have a clue how bad it really is.

I don't know what is ahead for her, but at this time of the year, as I have done every year for the past few years, I realize that this may be her last Christmas.  She may have a dozen more in her, but at 94, looking at the possibility of this being her last Christmas is not unreasonable.

I need to concentrate on being in her moment and making this time of her life as rich as I can, letting her enjoy camaraderie on her level, having that "do you think I'm going to make a hunnert?" conversation a dozen times in an afternoon, if that is important to her.  I need to stop worrying about how quickly her dementia is progressing and start concentrating on what she has left and how to be with her in the most meaningful way now.  

As I keep saying, every time I go to Atria, I feel like I'm going to Fantasyland and some days it's easier than others, but I think the best gift I can give her this Christmas, and for the rest of her life is to fully participate in whatever is her level of interaction on the particular day. To make every day meaningful on a level she can appreciate. To find funny stories that make her laugh, or fragrant flowers that always delight her. To continue to make books for her that prod her memory without her realizing that her memory is being prodded.

If I can fully do that, we will have a wonderful relationship for however long she is going to be with us, and neither of us will have anything to regret when she finally does go home to her husband and her siblings.

Dementia

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.