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This is my own personal journal, as a husband and caregiver.
|Saturday, September 13, 2008 The Traffic Light Story
I pick up Margery twice a week now. We come to my apartment for an hour or two, including some food, and I return her to Bedford. For the last few weeks, she has renewed her mild agitation about the place. She takes the first five or ten minutes fretting about “I hate it there”, “They don’t like me,” “I just want you” I don’t want to be there.”
So I ask myself. Is this just the “pre-school syndrome” as I call it? The child cries and fusses as his parent drops him off to daycare or to preschool. But the minute the parent is out of sight, the child turns to his teacher and friends and has a good day. I just don’t know.
I’ve noticed that Margery points at the traffic lights. At first I didn’t know what she was pointing at. This is a typical method of communication between us. Then I came to realize she was pointing at the traffic lights, and trying to tell me to notice them. She would indicate that I should go, when the left signal became green. I would say, “That one’s not for us.” Then when the main green light turned, she would again point for me to go. Pretty soon I realized this was what she was doing, even a half block or so before we got to the light.
I had three responses, in this order. First I reverted back to the old clichÃ© between husband and wife…I was mildly irritated at her backseat driving. Secondly, I realized that she was actually participating in something…the driving experience…I was excited! Third, I started trying to analyze the meaning: Had she increased her alertness? Was she being creative and expressing herself in this way, even when she couldn’t formulate words or phrases? (This took me right back to my typical question: does she know more than she can express?) Or had she declined some more, so that the traffic light was one of the few things left she could notice or respond to? I just don’t know.
But I know the proper response from me. I can enjoy this little “game”. I can thank her for her “directions” to stop or go. This gives us one more thing we can do together, even though it is very limited. It gives me one more little “bridge” into the vast unknown “territory” of her mind.
I can choose to weep, or I can choose to be grateful. Today I choose to be grateful.
Monday, September 15, 2008 An encouraging Observation:
I mentioned above that I have learned to make a study of Margery. In this, I am noticing something that encourages me about her complaining, when I first pick her up. It is like she is allowing me to “talk her out of” her concerns. By the time we reach home…about seven minutes…she has pretty well given up her mild agitation, and is ready for some fun. Then, sure enough, in about an hour or so, she is saying, “Are you ready to take me back?”
One of the concerns I imagine, from time to time, is the boredom she must be under, in the same place all the time. I am beginning to believe that this is not the case. If her attention span is so short that she forgets, in twenty minutes or so, that she was even negative about Bedford, then I think her life there must be a pretty content routine with which she is comfortable for the most part. This insight helps me a great deal.
September 19, 2008: Note to a friend:
Two things on my Alzheimer book: (It is coming along very well,) and I am extremely pleased with changes I have made, especially in the journal sections.
The first thing is the time frame. My friend Randy was correct in telling me to double the expected time, and then add on some more to that!
The second thing: I have revised my plan for getting it published...scaled it down a bit, without sacrificing anything. I think it is going to be GOOD!
You'd be surprised how well Margery is doing. Her speech continues to decline...it is almost non-existent now. But her attitude is wonderful, and we have hit on a balanced schedule that works well for me. I pick her up twice a week, feed her, and spend a couple hours. She is always ready to go back. I have regained some of my companionship with her. I had lost it, in my own failure to comprehend. She still communicates with gestures and limited words. She still smiles to see me and to spend time with me. Guess I couldn't ask for more than that!
Phil and Debbie invited me into the football mania. I told them I always enjoy a good game, but I don't know enough or care enough to get this involved! (You'll understand that I'm not pulling for you to win the big prize in this!)
You'll also be pleased that my transition of faith is taking a much more enjoyable track. I'm no longer angry or frustrated. I'm beginning to discern the bad AND the good in my faith, and that of others. (Why didn't anybody suggest to me that reading might be beneficial!) I'll send along my "thesis" when it is complete....in a few years, I'm sure.
Thursday, November 06, 2008 Good Day…Bad Day:
I decided to start keeping a record of Margery’s attitude and general condition, each time I pick her up. I’m still doing this twice per week, usually on Monday evening and Friday evening. Sometimes she is healthy and in good spirits. Other times she seems to be very weak and negative. Recently I have observed that she is more likely to be weak and negative. I decided it would be beneficial to keep a record. It will appear at the bottom of the latest entry.
Margery’s hair has been looking bad. I noticed that it was done only once during October, the first week. I called Jennifer McLaurin, the social worker, and left her voice mail, inquiring what is happening. This was three days ago, and she hasn’t returned my call yet. My guess is that someone drops Margery off at the beauty shop, only a few doors away from her room. Then Margery walks away. She doesn’t like to wait for anything these days. She spends a lot of her time walking up and down the halls. I have arranged for her hair to be done once a week.
At this point, Margery gets restless during a 30 minute TV show. We have always watched “Wheel of Fortune” at 6:30 in the evenings. At every commercial, she starts to get up, ready to go back. This was also true at Tim’s house, last Sunday. After about ten minutes, she started asking to go, about every five minutes or so. She does better if we take her walking on the “Long Leaf Trace”, or if we take her to the park with the boys.
Thursday, November 06, 2008 An Issue with Margery’s Weight:
I got a call from one of the nurses. She asked if I wanted to give approval for them to insert some kind of tube into Margery’s stomach, so they could ad to the nourishment she is receiving. They were concerned that she eats very little, and walks so much she probably uses more calories than she takes in. Her weight is down to 119. Her maximum weight in Bedford was high 130s.
I told them absolutely not. I explained that 119 is higher than her lifetime average weight, and that whe weighed about 94 pounds when she entered Bedford, just over a year ago. They were comfortable with this. Margery and I have living wills. We are agreed that we never want to be placed on a feeding tube. I’m not really surprised that she is losing weight. She ate a LOT more than she characteristically does, early in her stay at Bedford, including two or three cans of “Ensure”, one with every meal. After nearly a year, she started returning to her more typical eating patterns…that is to say, she eats like a bird.
Thursday, November 06, 2008 Overall health and strength:
I can see that Margery’s overall strength and coordination is declining. She gets into and out of the van with considerable effort, and some help from me. I put on her seat belt and remove it. She takes great care in stepping onto or off of a curb, or even the threshold to our apartment. She has no sense of direction or recognition. Sometimes she finds her room, other times, not.
Her small muscle coordination is even worse. She has difficulty with a spoon or fork, and drops a lot of her food. She quit her coloring books some time ago. I keep a few picture albums on hand, and we go through them. I point out the grandchildren, etc. and ask her if she remembers each one. She always says yes, but she wouldn’t be able to name them. Her attention span is quite short. She will lose interest before we get to the end of a small album.
All of this is still very discouraging for me. Sometimes I handle it well. Other times I leave her building, sit in my van and have a big cry. The single most difficult thing for me is Margery’s response to the little things she is experiencing. She always says, “I’m sorry” when she has an accident or throws up. She looks so sad and dejected. This totally breaks my heart. She will also say, from time to time, “I don’t like those people.” I find myself trying to figure out how much awareness she actually has. I think it is quite a lot. I think it will be so much easier for both of us, when she is not very aware of her surroundings. I realize it is not productive for me to focus on this too much. I understand grief. I have done grief counseling for most of my career. I also realize that an extended illness causes the loved ones to experience on-going grief, spread over many years.
Awareness is good. It is helpful. For the most part, I think I am doing well. I have always been a positive person. This works for my benefit now. I enjoy solitude. For most of my life, I have not had enough solitude. Now I am learning to value the benefits. I also realize that everyones life is a combination of the positive and the negative. I alone can decide which will be my focus. To me it’s a no-brainer! I choose to focus on the good, on the positive, on the joyful. I choose to keep a spirit of gratitude. No, it’s not always easy. Every day is a learning journey. Early in Margery’s confinement to Bedford, I dreaded visiting her. It was simply too difficult. It took a long time for me to move beyond that. In the last few months, I have rediscovered the comfortable companionship between us. Sometimes I want to pick her up and bring her home for a visit. Other times I don’t. But every time I regard it as a learning experience. This attitude helps me a lot.
Record of Visits:
Wed. 10-15-08 OK, but pretty listless
Wed. 10-22 Listless; didn't eat anything
Sun. 10-26 Tim's house; restless; no food; upset stomach;
Fri. 10-31 Good day; hungry
Mon. 11-3 Very shaky; breathing heavy; we didn't go out; very sad; bladder accident: "I'm sorry."
Thur. 11-7 Perfect evening; hungry; I told stories, and we laughed a lot.
Mon. 11-10: Began very discouraged…became cheerful…we sang…It was only 58 degrees, and she froze. She is not going to do well in cold weather.
Friday, November 21, 2008
I got a phone call today…and suddenly my life is better!
Jennifer is the social worker at Bedford Care Center where Margery lives. She asked me if I would be interested in considering their other facility. She said she wasn’t trying to get rid of Margery…that Margery is one of their favorite residents. But she said their other location has a wing that is uniquely for Alzheimer patients. I told her certainly, I would like to take a look at the other unit. Ten minutes later I got a call from Paula, the social worker in the other location.
Ten minutes later I arrived at the other location. I am awed by how much better this would be for Margery! It is only three minutes from my apartment. This will be a considerable improvement for me. I have been driving about ten minutes, depending on traffic.
The Alzheimer unit is contained. There are only twenty beds. The outdoor area is beautiful, and the patients are free to come and go at will. The dining hall is small and intimate. The recreation area is the same. The staff is smaller and much more personal. They get acquainted with their patients. They eat with them, and assist them as needed. They are much more schooled in the unique needs of the Alzheimer patient. The place is quiet and clean. It is well arranged, so the patient can find his way around with ease.
I could hardly contain my emotions. This looks to me like an answer to prayer. I have been concerned for Margery on several issues, some of them hard for me to identify clearly. All of these concerns will be met in this new facility. I did the initial paper work, and told them the sooner the better. I expect Margery will move there within a few days or weeks.
Here is another benefit. Margery will not require a private room in the new place. There is a family atmosphere there. The rooms are very nice. The one-on-one care is much better, and the patients become acquainted with their care givers. The other place is very large and bustling. Margery is walking around, most of the day. (This is typical of Alzheimer patients at this point in their progression.) Margery has a constantly changing set of caregivers, and sometimes she says, “They don’t like me here.” In the new place she will have a lot less visual stimulation, less noise in the halls, and more personal attention. She will still have her hair done each week.
There is a financial benefit to me. I have been paying $465 a month so Margery can have a private room. I have been paying $10 a month for cable TV. She never turns it on, but I was reluctant to remove it.
Clothing has been a concern to me. Margery has her closet jammed with clothing, and it is hard for me to discern which items she needs, in the different seasons. Paula advised me to get her five good outfits, likely sweat pants and tops. She said the staff will advise me what needs to be taken home, and what needs to be acquired.
All in all, this new possibility gives me a tremendous sense of relief. I believe Margery will receive a lot better care. And I believe she will feel more secure and content.