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.

Brianna's Birthday

I had been up late the night before making a cake for Bri so we had cake, balloon, presents (two--one from my mother and one from us) and party plates to bring.  I decided to make two trips and went over at 10:15 to drop off the presents.   I left the big box from us on the floor and gave my mother the bag of her gift on the kitchen counter.  "I'll sign the card in a minute," she said.   When I left I reminded her to sign the card and said "Do it now before you forget."  She got up and headed toward the bag as I went out the door.

When we returned half an hour later, dropped the cake stuff off in the dining room and went to the apartment.  The big box from us was gone and the bag was still sitting there with unsigned card.  When I asked her where the box had gone, she said she knew nothing about a box and if it was gone, someone must have come into the apartment and taken it.  Sigh.  Fortunately Ned found it sitting on her bed.   I asked her to sign the card and she only wrote "love GaGa" and I know it was because she couldn't remember Bri's name.

New Friends

When we were looking for a place for my mother, just about this time a year ago (if you can believe it!), I remember walking through the place in Petaluma where we almost signed a contract.  We were going through the dining room and since it was about 1 p.m., most of the place was deserted, but there was this one table with three women at it.   They had finished their meal and were just sitting there talking and laughing.
 
I thought to myself at the time, "this is what she needs.  She needs friends in her life again."

At that time, some of her close friends had died, one had developed Alzheimers, one was in a facility and too far away to see.  Her best friend, several years younger, still had the stamina that my mother no longer had.  So she sat in her house all day long and it seemed she never saw anybody but her hairdresser.

I felt so hopeful that getting into a facility would bring her friends again.

Well, that didn't happen right away.  She talked with people at mealtime, but had no interest in forming friendships, a good deal of that, I'm sure, being that she couldn't remember them once she returned to her apartment.

Over the months, her resolve not to get involved has strengthened, and mine to get her involved has weakened, so that I now accept what she is, where she is, and how she is.

Today we went to lunch and chose a table where nobody was sitting.  The table nearby had three people at it, including Loretta (my mother doesn't know her name), an artist who recently had some of her paintings on display in the state capitol and was interviewed on TV.

But Loretta barely remembers that, and my mother doesn't remember it at all.   But they are friends.  They don't know each other's names, but they laugh about what they can't remember.  They insult each other and laugh together and they are like the women I saw at the other facility.  They will probably never visit each other's apartments, or make plans to do anything together, but they recognize each other, they recognize that they like each other, and when they get together, it's like they are old friends, who understand each other in a way that I can't really understand each of them because I'm not there yet.

I left Atria today feeling very good about how far she has come, socially, in a year...when I thought she wasn't progressing at all.

A Hunnert

My mother hasn't asked me in several weeks whether or not I think she's going to live to be "a hunnert" but today that was all she was worried about.  That and the "old plants" that Niece decided to dump on her because she (Niecie) didn't want them and figured she could just give them to Aunt Chubby.   The story of THAT, now, is that the plants died the night after Niecie brought them to her.  Can't remember how many times I heard that story today.

But it was definitely overshadowed by the "hunnert" discussion.  (She has finally decided that living to hunnert would be kind of nice.)

I'm always trying to find things that might interest her that I can tell her, because there is nothing interesting that I am doing most days and nothing interesting that she is doing any day, so this morning I had watched an episode of "Extraordinary Women," the story of Audrey Hepburn, who was truly an amazing lady.

I figured my mother would remember who she was, and she did, so I gave her a capsule summary of Hepburn's life, growing up in Holland under Nazi domination, unable to become a ballerina, her dream, because starvation had changed her body and she no longer had the body of a dancer, to getting cast in Roman Holiday, her first picture for which she won an Oscar, to her quitting show business to concentrate on helping the starving children in countries like Bangladesh, Somalia and other countries, and the sadness of her getting cancer and dying within a year after her diagnosis.

I finished my story, she looked at me and said "do you think I'm going to live to be a hunnert?" (which is always followed by "why am I still alive?" and "why did all my siblings go off and leave me?"  I can't relate to the last question, since my sister hasn't been around for nearly 45 years, so it never occurs to me to wonder why I'm alone.)

Today I chose a different tool to help myself respond to her endlessly repeating questions.  I remembered her mother's last days.   I've described her before as the gentlest, sweetest woman who never said so much as "damn" in her life, but she was kicked out of a nursing home for cursing like a sailor (apologizes to sailors), and tripping people walking down the hallways with their canes.

So they had to move her to the mental hospital at Napa and my mother has talked many, many times about how frustrating it was to visit her because she suffered from aphasia (a term my mother doesn't know but only says she would try to talk with her mother and all her mother could say was blah-blah-blah-blah).  My mother would stay with her as long as she could and eventually her mother would ask to go back into the building and my mother would return home so frustrated that she couldn't get through to her.

Every time she asked me if she was going to live to hunnert today, I told myself how grateful I am that she could ask me that question and that I could understand her.  I also remembered her sister, my Aunt Barb who, before she died, could not recognize any of her children.  The last person she recognized was my mother and the day she lost that recognition was the last time my mother visited her.

So I'm lucky.  She knows me.  She can speak and be understood.  And if she doesn't realize she has asked the same question a dozen times already, that's better than my having to leave without the two of us sharing anything at all.

Atria gave her a form that her doctor has to fill out at her annual exam.  I'm amazed at how docilly she has accepted that.  I've been trying to get her to the doctor for several minor things that have come up but she digs in her heels and says absolutely positively she is NOT going to the doctor.  But today I told her I would make an appointment and all she said was "OK."  So she will finally get to meet her doctor...and maybe, just maybe this doctor will do a mental assessment more comprehensive than asking her if she knows what day of the week it is when she wakes up in the morning, which is all the last doctor (a gerontologist) did!

Our Weekly Lunch

I try to have lunch with my mother once a week, usually on Wednesday, though this week it was Thursday because of the dementia support group yesterday.  She was in good spirits and our conversation mostly centered around what I was going to do for the rest of the day.  After asking me several times what I was doing the rest of the day, we went to lunch where she asked me again several times what I was doing the rest of the day, though at least once she said "I may have asked you this before, and if I have forgive me, but what are you doing the rest of the day?"  I was surprised that she realized that she might be repeating herself.

When we left the restaurant, she passed a woman and they had a friendly exchange, like old friends do, and that made me feel very good.

All in all, this was a good visit.  I like days like that.

Lessons to Learn

This morning was my monthly dementia support group.  I didn't have any concerns or anything really to talk about this time, but I always get a big lift from being there with people who have gone through it (two of the today had buried their loved ones with Alzheimers) or are going through it.  One of the things I picked up today was this moving poem which, I think, says a lot.

Do not ask me to remember
Don't try to make me understand
Let me rest and know you're with me
Kiss my cheek and hold my hand.

I'm confused beyond your concept
I am sad and sick and lost
All I know is that I need you
To be with me at all cost.

Do not lose your patience with me
Do not scold or curse or cry
I can't help the way I'm acting,
Can't be different 'though I try.

Just remember that I need you
That the best of me is gone
Please don't fail to stand beside me,
Love me 'til my life is done.

-Author unknown

It says so much.  I think I'm going to drop it off on the dining room table at her apartment.  She'll find it some day and not know who put it there (even if I tell her I'm bringing it to her), but maybe it will help her...a little.   It helps me to read it over and over again and try to feel what she is feeling.   The line I'm confused beyond your concept in particular gets to me because when I get frustrated it's because I expect her to make connections in a certain way and I have to remember that she can't.  Like even though I remind her that if she wants to know what the air is like outside, she just has to move her hand 6" and open the door. Whenever I say that her face has a bland expression on it as if that was the most ridiculous thing in the world for me to suggest, and, of course, she does not do it, but waits for me to give her a weather report.

In this whole process I am getting a different picture of the mother I've always known.  I have done some reshuffling around here and have moved some books from my overstuffed office onto the shelves in the living room.  It involved moving my mother's diaries.  She has kept a diary all of her life, hardbound books that she would record her day in every day.  When she left my father, she threw away the books she had kept for 37 years because she didn't want to remember any of it.   So what is left is everything from after she left my father.

She wanted to throw those away, but I kept them, with the idea in mind that I would read through them and find out what was really going on with her all these years.  But I have found that it is like reading something from a court reporter.  Totally devoid of emotion, just recording her day.  The diaries stop before Paul died, but David's death gets two pages, because we were with her for two days.   Other than saying she can't believe he's gone, it is a clinical description of what happened and because she happened to have guests from Holland staying with her at the time, the next several days (up to the funeral) were filled with the places they went, how she entertained them, what she cooked, etc.  It was as if Dave's death was just a blip on her radar.

When I read over these books, I realize that this is what has frustrated me my whole life.  She does not relate emotionally to most things.   Even before the dementia, I tried to let her know how frustrated I was at always being put second behind her husband's family, about being excluded from family photos at her wedding, about the times I begged her to come and see the kids in performance, but she had something to do with his family, about the holidays when we had to be "fit in" whenever they had a free day,but never ON the holiday.  This has consistently washed over her like water over a bridge.  It has never once penetrated her brain that I was hurting for so many years at being always "second."  When she married I thought it would become a blended family, not a "yours" and "mine" with "yours" taking precedence.

So a lot of what is frustrating to me in her dementia is just an extension of how she has been acting, I guess my whole life.  I remember having one emotional conversation with her, many years after my typing teacher Sister Anne died.   She broke down in tears and told me how it had hurt her that I preferred to spend time with Sister Anne than with the family.  At that time my father made life at home so unpleasant, and Sister Anne was a safe haven, and I had zero notion of how my mother was feeling, because we never discussed feelings in our house. The few times feelings erupted were so disastrous that it made you hide them even deeper.

I don't know if this descent into dementia is a learning experience for her, if she is learning anything about her continuing loss of memory, but trying so hard to be with her and support her and make things easier for her is very definitely a learning experience for me.

St. Patrick's Day

I took two Guinness cupcakes I had made, in a container, up to Atria to give to my mother, who covered them and left them on her kitchen counter.  I know they will be there still when I go back in a couple of days and she won't remember who brought them to her, but owell, it was a nice moment giving them to her.  We had our usual one-sided conversation, with me trying desperately to find something interesting to tell her (and today it was all about all the silly problems I had during the day).  When I finished she sighed and said "well...nothing exciting is happening here.  Is it cold outside?"   Sigh.