Thursday, May 13, 2010

Disease



When Ted struggles the most with his memory, I tell him he has Alzheimer's. He thanks me profusely. It might seem like rubbing salt in a wound to bring it up over and over again, but Ted forgets that he has a disease that is robbing him of his memories and of his ability to form new memories. When Ted is struggling the most, he often wonders what is wrong with him. He thinks he may be crazy. He worries that others will think he is stupid.

Because Ted often forgets that he has a brain disease, he becomes ashamed and tries to hide the fact that he may not know where he is, who I am, or what has happened yesterday or today. I cannot discern his current state of confusion by asking him what he remembers (as in, "Do you remember where you are?"). To do so either causes him great anxiety as he fears being exposed, or it insults him when he is having a lucid moment and knows full well where he is. I have learned to make assertions rather than ask questions. For example, when we are having breakfast, I may offer up observations such as "The weather here in Oregon is really nice. Barbara and I have loved living in this house for all these years." Simple statements of fact can offer him relief. They often bolster his ability to remember related information. He might reply,"Yes, I am really glad to be able to live with you". Or he might confess, " I was confused about where I was. Remind me how I got here." I stick to short declarative sentences. "You moved here when Juanita died". "Juanita and you lived in your own apartment at Stoneybrook just a few miles from here". Ted often visibly brightens has he gains some bearings and reconstructs an outline of his recent history.

Ted is an intelligent man. His ability to reason is still largely intact. But without memories, he has little information to work with. I offer him that information so that he can figure things out for himself to some degree. Once he is feeling more confident, he will often say "I will forget this again after a while". "I know, Ted, but I will remind you when you do. Feel free to ask me any time." Of course, Ted won't remember that I have made that particular statement. However, I can help him feel safe. I can give him reason to trust me. He will not recall the particulars, but he has an emotional memory that can serve to reassure him.

Each day I try to learn a little more about how to help Ted. It is a process. It is an opportunity to serve.

Tuesday, May 4, 2010

Music

Johnny Cash 1969 from Wikipedia

Sometimes Ted and I just run short of things to say. That happened last night after dinner. I found myself asking about the radio his family had in the 30's. I launched into a description of transistor radios and then MP3 players. I realized I was probably being pretty dull when I had a brainstorm. I would get my MP3 player and show it to Ted and discuss things like how it can hold thousands of songs. But I realized that even with a hands on demo, it was still pretty dull. So I played a bit of Johnny Cash and let Ted listen through the head phones. I could crank the volume because he is very hard of hearing. His face lit up.

"Would you like to hear more?" I asked. "I'd like that. I think I'd really like that", he replied.

So Ted listened to Johnny Cash live at Folsom prison. His head bobbed. He sang along. He shouted out. When it was time for bed it took a little while for him to calm down. "That is my music. That's my people's music." he cried out.

I love the nice surprises.

Sunday, May 2, 2010

Variability

photo credit: I am what I have found by Lomo-Cam


Each day is new for all of us. We may be more or less energetic. More or less motivated. Sadder or happier. Because we have a memory, we can see the variation during recent days. Even so it can be hard to avoid thinking that we have always been in our current state. For example, when I am depressed, I find it harder to believe that I was happy in the past.

Imagine how much more difficult it would be to understand our ups and downs if we had no memory of them. The ability to put things in perspective is seriously impaired. If Ted feels weak today, then he believes he has always been weak. He will say that he has good days and bad days, because his reasoning still works. But he has no memory of what happened in the past few days.

Goal setting is difficult. During a recent spate of good days, Ted became excited about the prospect of visiting his son, Bruce, in Illinois. I was surprised that over a period of two or three days he seemed to remember the idea of a trip. He looked forward to it and became impatient to know when he could go. Then a couple of days ago, Bruce sent a card with words of encouragement. Bruce mentioned that he was happy to hear from Barbara that Ted was looking forward to a trip to Illinois. Ted suddenly became quite angry. "I'm not going anywhere! Whose idea was this? Why didn't you talk to me about it?" I had just left the house, so it was Barbara who had to maneuver through this minefield. "Daddy, the trip was your idea. We were trying to help make it happen." Ted thought that was absurd. I suppose just then he was tired and perhaps anxious at the prospect of traveling. Since he had no memory of discussing it some days earlier, he felt strongly that the trip was some plot being foisted on him.

Most arguments contain an element of "I said" vs "you said". Even between two people with excellent memories, recollections vary. Two of us may have heard the same statement and interpreted it differently. If one can find documentation such as an e-mail, they may hold it up as evidence that their version of the story is right. The other may read it and explain that they remember the e-mail, but that they also remember seeing quite a different meaning or tone in it.

Because Ted has virtually no memory, arguments are futile. He cannot support his side of the argument by citing things that happened in the past. During the stress of attempting to argue, he may forget that he cannot remember. His reason is in tact. His current emotions are available to him. So he is likely to insist that there is no way he could have said or done something that is incompatible with his current emotional state. If Barbara or I try to use logic, his ability to reason is there, but he has to fabricate his own idea of what has happened in the past. His emotions may make it very difficult for him to believe our version of recent events.

It is hard enough to reconcile differing views between two folks with memory. It is much more difficult with someone who has virtually no memory. Even when we are able to reach agreement, Ted will often forget in less than 10 minutes. He relapses to taking a position based on his current emotional state.

It is very dangerous to say, "Don't you remember?". It is a common phrase in most disagreements. It is devastating for Ted. He may despair when he is challenged with that phrase, or he may become angry and agitated.

I try to stay in safe territory with Ted. For example, I help him reminisce about the farm or the war. Lately, he is fabricating entirely new versions of even his most vivid memories. There is no point in trying to correct him. I can offer up words or phrases that may entice him down memory lane, but I cannot coerce him to walk where I would like him to.

The safe territory keeps getting smaller. There are fewer detailed memories that I can help him access. Even when Ted can remember events, he may forget the words need to describe those events. I give him a chance to grope for the right word, but once it is obvious he is stuck, I offer whatever seems most likely. Sometimes I hit right on the mark. Other times my suggestion merely confuses Ted and I scramble to redirect the conversation.

I have feared that I will tire of rehashing the same stories with Ted. Sometimes I have. But I am surprised to find that more often we have an exchange that I find interesting and even enlightening. It works best if I immerse myself in the story as it is told. I can consider how I might have handled a situation. I speculate on why Ted made certain decisions. It is also important to believe that I am performing a valuable service by fully giving my attention to Ted.

Despite the many difficulties occasioned by Ted's handicap, our relationship is deepening. My respect for Ted grows. I learn important lessons. I hope that will continue as the dementia progresses.