Journey Through Dementia

Journey Through Dementia

Thursday, November 21, 2013


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.

Wednesday, November 20, 2013

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.

Tuesday, November 19, 2013

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.)

Monday, November 18, 2013

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.
AtriaApron.jpg (134436 bytes)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.
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They also enjoyed running up and down the path in the garden, while Walt, Ned and Tom watched.
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Eventually, we headed off for brunch.  The girls both had to walk with Uncle Ned.
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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.
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Ned and Lacie looked cute for the camera.
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and he and Bri mugged for the camera.
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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! 
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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.
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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.
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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!

Tuesday, November 12, 2013

Feelings...Nothing More than Feelings

I was writing a letter to a pen pal this evening and talking about my mother and the grandkids.  She never remembers seeing them, can't remember their names, and thinks they are a toddler and a baby.  I remind her all the time about how old Brianna is and how old Lacie is and she can retain that information for a few seconds and then will ask me again how old Bri is.
But as I was writing it, and how sad it makes me that she can't remember her great grandchildren, I began to think back over the time when I have been disappointed in things that she has taken no interest in.  I finally decided that this inability to remember the great grandkids is just a continuation of a trait that she has had most of my life.
I can't remember how involved she was in my emotional life when I was growing up, but I think back over the times when I have been disappointed in her reaction to things, in her inability to empathize, or even listen constructively and it makes me think that there was always a mis-firing in her brain where that was concerned.
When she initiates concern for someone, based on right or wrong information, she is very empathetic and concerned for the welfare of the person she is thinking of.  I think of Peach's husband Bob, for example.  The last time she saw him he was in a semi-coma in the hospital after his stroke and was in and out of consciousness.  We all worried that he was going to die, and the reports were not encouraging about his ability to ever be normal again.
As Bob continued to amaze us all with re-learning to talk, to walk, etc., in my mother's head he was still that shell of a man, hovering on the brink of death, unable to recognize people or talk to people.  Even now when I bring her pictures of him sitting by a lake fishing or standing in the yard with Peach, smiling, she spies his walker and moans about how sad it is and what a shame that he will never be the man he was again.
By the same token, I was amazed to see her friend Dodie, who came to visit her recently.  For a few years now she has told me that Dodie had "lost it" and she describes her with the circling finger around her ear that people use to describe someone who is a bit crazy.  I thought she must be in end stage Alzheimers, but when I saw her, visiting my mother, she definitely has some memory problems, but seems to be in much better shape than my mother is herself.
When I think back over the things that have disappoined me over the past many years, it is always the conflict she had between her new family, after she married Fred, and our family.  As I have written her many times, Fred's family always came first.  I gave up trying to get her to understand how much that hurt me because it's not even that it goes in one ear and out the other--it's like she is incapable of processing my hurt feelings.  I tell her how hurt I was when I wasn't included in her  wedding photos and how moved I was when her stepson Ed's wife insisted I get into a photo with my mother and Fred's kids because "you're part of the family too."  It was the first time I had been considered part of the family and it still makes me cry emotional tears when I write that here.  I have told her that several times and it never even registers.  Not even an eyeblink.
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(her 90th birthday, when Fred, Jr., in the middle, was still alive)
I think about all the shows the kids did that Walt's family always attended and my mother never did because Fred didn't like them, or because she was doing something with his family.  I think about the times I begged her to come to a special performance, but she never did...and now she remembers attending them all and how much she loved them.  It does no good to point out that she was almost never there, though even in the days when she was more with it than she is now, I did mention a few times how sorry I was that she missed this or that very special performance.  Again, there is no reaction.  It's as if I had never spoken.
So the way she is now, in that aspect of things, at least, is different from her dementia.  It's just the way she always was.  Maybe that helps a little.  I don't know.  I'll have to work on that....
It's a difficult situation when you, yourself, are one raw ball of emotion most of the time!