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.

Socialization?

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.

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.

Perks

This morning I went to a support group for people dealing with dementia and Alzheimers.  It was a group of about 10 people, the leader of which was actually an old friend.  Surprise, surprise.  He had come to the group because his mother died of Alzheimers, and I guess he just stayed on to be part of the support system.  His co-leader was extremely knowledgeable about everything.  She has a mother with Alzheimers and a sister with a different psychiatric problem, so she is dealing with it on two levels.

 

There was a woman in the early stages of Alzheimers, and a man with Louie body dementia (which is Alzheimers paired with Parkinsons).  Both of those people are still high functioning and able to live independently and are still driving, though the man was encouraged to give up his car.  The rest of us were dealing with loved ones in various stages of dementia or diagnosed Alzheimers.

 

There was the older man who moved with his wife to the University Retirement Community, the Cadillac of assisted living facilities.  He said that he was attracted to URC because of the many, varied activities that they offer.  But his wife has not left their apartment in the 6 months they have lived there. That made me feel better because that pretty much describes my mother, though she does go to the dining room and sometimes goes to the table where they work puzzles, but nothing else.

 

There was a woman whose mother was just moved into assisted living back east.  She is here and her brother lives 2 hours away from Mom.  She's feeling great guilt for being so far away, and also still suffering grief over having to pack up the family home.  She seems not to be getting much support from the rest of her family and I suspect she will, like me, return to this meeting next month.

 

There was a man whose wife is in end stage Alzheimers.  He has obviously been coming for a long time and was mostly there just to be a part of the group.

 

The last woman is taking care of her husband, also with Alzheimers.   I had to leave before she had a chance to speak much, but assume I will get to know her in the future, since she seems to be a long-term member as well.

 

The dynamic of the group was wonderful.  Each of us with immediate concerns got a long time to tell our story and get feedback.  I know there is nothing anybody can do, but being with people who all understood and who cared was such a wonderful feeling.

 

From there, I went to Atria for my weekly lunch with my mother.   I've said it before and I'm sure I will say it again many times, but there are perks to dementia.  She barely remembers our fight last night, does not remember yelling at me and hanging up on me.  I laid out for her the new rules, which are that she is going to do her own laundry, but with my help, so she won't feel that anybody is taking her clothes and leaving her with clothes she does not recognize.

 

I told her I would take her shopping to get new clothes and when faced with the choice of going to a regular store nearby and paying full price, or going back to San Rafael to the thrift shop where she worked for so many years to shop there, she decided she really didn't need any new clothes after all.  She did try to bring up all of those unfamiliar clothes and I just told her that I wasn't even going to discuss them with her any more and that she could do what she wanted with them.

 

Then we went to the dining room and had a very nice lunch with my friend Peggy and another woman.  I was pleased to see how many people my mother greeted coming into the dining room.  That was a very good sign. At one point she had to sign a ticket for me to eat there and she couldn't remember her name.  I thought she was kidding, but she wasn't.  When I told her it was Mildred she wrote that and didn't add her last name because she couldn't remember it.  That hasn't happened before, that I am aware.

 

So it was a good day, following a very bad afternoon and I left feeling good.

Laundry, Part 2

We had a bad few moments today..  A telephone fight with my mother over clothes that I washed for her that she swears are not hers and she complains that her closet is emptying out and she doesn't know what has happened to her clothes.  She ended up screaming at me and hanging up on me.  I just don't know what to do about her.  They are her clothes and she doesn't believe that it is her memory problem that she doesn't recognize them.  I am so frustrated with all this!!!!  No wonder it brought tears.

I was so upset after the incident with my mother that I was fuming.  I sent off several messages to different people for different reasons, one of them to a medical professional I know to ask for suggestions of a therapist I might see that could help me deal with my mother.  She gave me a couple of names, but also suggested I check the Senior Center to see what they might offer.  Turns out they have a support group for people dealing with people with dementia and Alzheimers, which meets once a month...and the next meeting just happens to be tomorrow, so I'm off to a support group tomorrow and if that doesn't seem promising, I'll check out the recommended therapists.

Also, I came up with a plan of action.  I am going to take her shopping for new clothes.  I'll even take her back to the thrift shop where she used to work, if she wants.  We will then bring those clothes home and LABEL them all together.   And then I will let her know that I am not going to do her laundry any more. She is going to do her laundry there at Atria, only we will do it together (since she is afraid of getting lost going to the laundry room, just a few steps from her apartment).  She will take the clothes from her hamper and put them in the washing machine and transfer them from the washer to the dryer and then bring them back to her apartment.  It will be much less convenient for me, but if it will avoid another incident like today, then that will be good.

I don't know if she will remember our fight, or if she will remember and not be speaking to me tomorrow.  We are scheduled to have lunch at 11:30 and the support group meeting is at 10:00.  I don't know what I'm going to find at Atria tomorrow.  But I have to do something to make this right.

Laundry, Part 1

My mother had a couple of checks to deposit, so we went to the bank today.   Walt asked why we didn't just use an ATM machine and I told him that she was set in her ways and liked doing her banking in the bank, but when we got there, she realized it wasn't the bank she was used to in her old house and said she guessed she could use the ATM machine.  Only she couldn't because, of course, she didn't have a clue what her PIN number was. For that we have to make an appointment and re-do her whole card. I may do that at some point in the future.  It's unlikely she will have any more checks (or many more checks) that need to be deposited anyway, so it may be an unnecessary step.


When I got to Atria and was signing in, my friend at the desk handed me a big pile of clothes my mother had brought to the  desk again, saying they weren't hers.   It was the ENTIRE load of laundry I had done for her last week, including her underwear.   I brought them to her apartment and she argued with me that she had NEVER had clothes that color before.  I don't know if I convinced her to keep them, whether they were hers or not.  I pointed out that she hasn't purchased anything new in decades, since she got all of her clothes at the thrift shop where she worked so even if they weren't hers, what difference did it make?


She said she didn't want to be walking around Atria and have someone accuse her of stealing their clothes.  I didn't point out that it was unlikely anybody would know if she was wearing someone else's underwear.


But I came home and decided that when I do her laundry next time, I will have to hang it all up myself and not leave it for her to do.  If I leave it on the bed, as I usually do, she can't recognize it and I'm tired of having this battle with her every time I do her laundry.  (She won't do her own laundry because she's afraid she will get lost going to the laundry room--which is at the end of the hall from her apartment--and won't remember how to work the machine.  She wouldn't even look at the laundry room when I tried to show it to her after she moved in, though she insisted we buy detergent and bleach.)

Girls' Day

What a fun day it was today.  Tom and Laurel were driving through Davis on their way back to Santa Barbara and stopped for a visit and brunch with my mother.  Walt and I went (of course), and Ned took advantage of the fact that he can still drive (he has neck surgery next week and will be house-bound for about six weeks) to join us too.

 

I had brought gifts for everyone (except my ,mother, because I had given her her gifts from our vacation when we returned from the vacation).  For Ned there was the finale season of Dexter on DVD for him to watch during his recovery.   For Tom there was a collection of spices I bought at the Spice Bazaar in Istanbul.   For Laurel there was a box of apple tea, also purchased in Istanbul.  For the girls there was an apron and a flower wreath for Bri and a doll for Lacie and whistles for both of them, all bought in Ukraine and then there were books for Lacie's birthday (which was a month ago) and books for Bri about dinosaurs, which she studied this summer (all books purchased at Logos).

 

(Obviously I should have purchased an apron for Lacie too, but I didn't think she'd be old enough to appreciate it.  Obviously I was wrong!)

 

We sat in my mother's apartment and visited for awhile and then, when the kids began to get a little restless, they went out into the garden.  The lady next door to my mother has a dog.  We knew that she had a dog because I'd seen the fence for it for weeks, but I had never actually seen the dog.  But today, with all the commotion of the girls playing outside, the dog came out to investigate, and they made friends with it.

 

 

They also enjoyed running up and down the path in the garden, while Walt, Ned and Tom watched.

 

 

Eventually, we headed off for brunch.  The girls both had to walk with Uncle Ned.

 

 

I was able to reserve the little private dining room, off the regular dining room, which was just perfect since we didn't have to worry about the noise or the girls running around.

 

 

Ned and Lacie looked cute for the camera.

 

 

and he and Bri mugged for the camera.

 

 

Lacie had worn shiny black boots and my mother loves shoes.   As a kid the thing she wanted most was a pair of black patent leather shoes, so she loved Lacie's boots and the two of them made a game out of taking them off, stealing them, getting them back, and putting them back on again.  It doesn't take much to entertain a toddler...or a great grandmother! 

 

 

Ned was talking to Bri about his upcoming surgery (he is having a bulging disc in his neck fixed, with cadaver bone and fusing of the two segments of the cervical spine).  Bri was very interested in hearing about it and trying to imagine what he was feeling (numbness and tingling in his hand and pain in his neck).  She listened intently and was very cute and asked good questions and Ned was just great about explaining it in terms that a 5 year old could understand.

 

 

When we returned to Grandma's apartment, Ned got out his x-rays and showed her the bones in his neck and explained how the doctors were going to fix him.

 

 

But eventually it was time for Tom and family to get on the road.   They had to make it back to Santa Barbara tonight and it's a long drive. But it was such a good visit and I think I'm going to put together a Snapfish book about it for my mother, who by next week will have forgotten they were ever there!