Alzheimer's disease · Behavior · Caregiving · Everyday

A day in the life / June 13, 2006

I took the past two days off, so I’ve been with my mother for four days straight, all day.  There’s a lot I don’t see of her daily mindset because I leave for work at 7:15 and don’t get home until about 4.  By that time of day she’s usually as sharp as she can be, but for the past four days I’ve seen the daily battle to orient herself.  Saturday was a bad day due to an emotional upset the day before, so she stayed in bed until afternoon, when I urged her to get dressed.  This she did, only to go lie down again.

Sunday was a little better: she got up at about 9 and didn’t eat breakfast until 10:30 or so.  Getting up involves several trips to the bathroom, several trips back and forth to the living room where she sits in her spot on the couch and tells me that she cannot walk.  I know that something is going on with her legs–we’ve had x-rays, vascular tests, and an MRI and nothing specific turned up.  The doctor ordered physical therapy, which lasted for about three weeks before her anxiety made our days unbearable.  On the day the pt was scheduled, my mother would start calling me at work early in the morning, telling me how sick she was.  At first I went home and cancelled the therapy, which caused a spontaneous remission of whatever ailed her.  The next time I tried tough love, refusing to come home or cancel.  My mother hung up on me, and then refused to answer the phone when I called back.  My sister went to the house and Mom wouldn’t get out of bed.  What do you do in that case?  We cancelled the therapy altogether.  I got a progressive relaxation tape for us to do together, thinking that it might help with not only the exercise but also the nerves.  This lasted about a month before she started refusing that, too.

I have read where Alzheimer’s can affect some people’s gait.  My mother’s complaints are so imprecise–sometimes it’s an “ache” and sometimes it’s “weakness.”  She has a walker and has just begun using it, so I know that she’s not making it all up.  I’m sure there’s also some arthritis, but after we began using the 8-hour Tylenol, her behavior changed and the nurse practitioner felt that, given my mother’s history of medication sensitivity, we should discontinue the Tylenol.

So we reiterate the leg problems each morning before finally and  necessarily making the bed.  I’ve told her to leave it unmade or to make it loosely, but she won’t have that.  I don’t argue with her because it’s one of the few things she absolutely needs to do, and as such must give some kind of order to her life.  She then washes up and dresses, and finally has her instant decaf, juice and cereal or muffin.  Then she flops on the couch to say the first of her three daily rosaries.  She pretty much stays there all day.

Today I got her out.  As we were leaving I noticed that she had put her top on backwards and her pants were stained, but I didn’t say anything.  She was “flatter” than she usually is in the morning–maybe because she was leaving house, which always triggers her anxiety?  The day was sunny, warm and fresh–the only comments she made on the way to the store were “What a beautiful day,” repeated three times.  She lasted about five minutes in the store before sitting down on some display furniture.  “I was looking for you,” she said when I rushed back with my stuff.  Needless to say, I didn’t get too much done.

Again in the car I asked her if she wanted to pick up lunch somewhere.  No answer.  I repeated it, trying not to sound annoyed.  “Whatever,” she said.  As we got closer to home I told her I wanted an iced coffee, and did she want one, too?  Her face registered absolutely nothing.  “Hello?” I said.  “I’m thinking,” she said.  I drove to the Dunkin Donuts near the house.  Unless she initiates a request, I know enough not to offer too many alternatives.  It doesn’t matter, in the end, as long as we get something.  When we got home with a light lunch, she ate hers silently and then lay down on her bed.

Because I hadn’t gotten everything I’d needed, I told her I was going to run up to the hardware store in town, and would be only fifteen minutes.  Because I was planning a short trip I didn’t close the big door, just the screen door, to keep the air flowing.  When I got back–fifteen minutes later, as promised–the big door was closed and locked.

This is an example of the little things that drive me nutty.  I dug out my key and let myself in–she was still lying on the bed.  I couldn’t help myself: “Why did you lock  me out?”  I said.  “I didn’t lock it,” she told me.

At this point I had to go lie down.  I dozed a bit and got up at 5:30 to make dinner.  My mother was sitting in her spot in the living room, eating Hershey’s kisses.  When I asked her if she’d like a light supper, she held up the foil wrappers and said: “I ate already.  I don’t want any dinner.”  I tried to shame her into eating but she wouldn’t have it.  So I went back into my bedroom and picked up a book.

About a half-hour later she was at my door.  “Did you eat dinner?  I’ll make you something.”

“What are you going to eat?” I said.

“I ate already.”

“The candy?”

Pause.  “No, I ate something else.”

“What?”

“Something that was in the refrigerator.”

“Well, if you’re not eating, then I’m not eating,” I said.  I could tell that this bothered her.  She walked away but was back in another half hour.  “What do you want to eat?” she asked me again.

“If you don’t eat, then I’m not going to eat.”

Silence.  “Well, I’m going to bed now.”

At this point I went out to the living room and began to knit, knowing that she’d be back.  I wasn’t sure how far to push this, because I was actually getting hungry and because I really didn’t want to make her too upset.

She joined me shortly, now in her pajamas.  “What can I make you?”

“If I have some roast beef and potato salad, will you join me?”

“Okay.”

So with only a minor blip (when I brought the meat and potatoes, she said: “I wanted cereal.”) we ate our light supper as we watched the Mass on the Catholic cable channel.  My mother recited along with the priest, even when he spoke Latin.  She had a cone of ice cream after that and went to bed at her usual time, after her usual routine of checking doors and lights and windows.

I feel like I’ve seen the other side and have returned to tell about it.  I know things will get worse and I only have the vaguest notion of how.  I wish I could go to bed after a day like today and sleep like a baby but I probably won’t.   How awful it is to realize that I’ll be glad to go back to work.  I worry so much about her quality of life–is this life the best we can do?  Is the familiar not always the best?

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