Journey Through Dementia

Journey Through Dementia

Sunday, December 22, 2013

The Magic of Bing

It was not one of her better nights. 
I had called her in the mid afternoon to ask if she would be interested in driving around town to see some of the decorated houses.  She said it sounded like fun.  I remember that was one of the pleasant Christmas things we did when I was growing up.  We would go out into "the avenues" in San Francisco and look at the houses, decorated in Christmas lights.  I was looking forward to doing it with her again. I told her Walt and I would come and have dinner at Atria with her and then we would go out after dinner.  She said that was fine.
I thought we could go a bit before dinner and have a cocktail hour, since she loves her vodka tonics and it would be a bit like old times to be sitting there and chatting over drinks.
But when we got there, she was not in her apartment.  I always worry when she doesn't answer the door because I'm afraid I'll go in and find her on the floor, dead, but she wasn't.  The apartment was empty, so we headed up to the dining room.
Yes, she was there, surprised to see us.  She didn't remember we were coming. 
The people she had been eating with were just finishing their dinner, so they offered us their seats and they left.  She asked what we had been doing, and I told her about the funeral.  Then she asked us what we had been doing.   Several times.  Each time we told her about the funeral.
The waitress delivered her dinner and she was surprised to find it on the table, not having remembered the waitress had just been there.  She asked what it was and said she didn't order it, but since it was there she might as well eat it.   Then she asked what we had been doing all day and what we were going to do after dinner.  I reminded her we were going out to look at lights and she seemed surprised that we were going to take her too.
I noticed she was more quiet than she usually is.  Kind of sunk into herself, arising periodically to ask us what we had been doing.
When a man walked by with green mint chip ice cream and Walt expressed surprise that they had green mint chip ice cream, my mother said that of course that was what they had.  It's what she always orders, she says, and immediately told the waitress she wanted a vanilla cone (which is what she really always orders).   When the cone came, she was shocked that they had given her 3 scoops, though they always give her 3 scoops.  She said she couldn't possibly eat that much and would take the leftovers to her apartment, but then ate it all anyway.
It was a fairly normal visit, though I did wonder if she was showing signs of a bit of Sundowners Syndrome, where older people with dementia are worse after dark than before dark (though if you never leave the building, I don't know if that is a factor anyway).
We went back to the apartment so she could get a coat so we could go look at the Christmas lights.  She did and we went out to the car.
I was tickled because I had brought my iPod with me, with a playlist of Christmas music and I was going to put it on, but something happened and the music never started.  I didn't realize how much I had looked forward to playing Christmas music on our travels until I couldn't play Christmas music, because Christmas music was always a big part of the season when I was growing up, and I wanted to bring back that memory for her. After trying several things, I could get an audio book to play, but still not the music on my Christmas playlist.
I decided to give it the "kick it" fix, turning off the iPod and then turning it on again.  When it came on, I chose the Bing Crosby record that we always played while trimming the Christmas tree, both when I was growing up, and then when our kids were growing up. I crossed my fingers and pressed "play."
Miraculously, it started.
So there we were, driving around all these beautifully lit homes in Davis and in the back, my mother is singing along to Bing Crosby.  I got all choked up and teary-eyed.  It was a perfect Christmas present.  It was a moment of "normal." I read recently that music is wonderful therapy for dementia patients and that even when they can't communicate in other ways, often they can still sing familiar songs.
My mother may not remember that we went to a funeral this afternoon, but by golly she sang every single one of those Bing Crosby tunes without a stumble.
Ultimately, it was a very good night.

Sunday, December 15, 2013


I visited my mother today and it was another one of "those" days where we talked about her age and her death and I couldn't get her interested in any other topic.  When I left the apartment and went out into the lobby, a gentleman was there setting up for a puppet show and the chairs were nearly filled with other residents.   I stood there and thought for a long time about going back and inviting her to come up and watch the show with me, but then realized that she would probably just say that she didn't want to and, sadly, I left Atria and came on home.

Saturday, December 7, 2013

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.