Dealing with Too Much

For a while, I had more than I could handle: new job, visitors, changes to our schedules. I think that's why I have not posted in three and a half months. Most of what I was handling was good stuff. However, carrying a bucket filled with diamonds probably takes just as much energy as carrying a bucket of rocks. ( I just checked. Five gallons of diamond weighs 147 pounds while five gallons of granite weights 112 pounds!) Many times I felt an urge to post, but I just couldn't summon the will to start.

Living with Ted is becoming more difficult. That is not a complaint, but it is a fact. At first I thought it might be getting easier because he sleeps so much on most days. Frankly, that does provide some respite when I am alone with Ted. Nonetheless, I have begun to feel a heaviness that is slowly growing. Ted is getting worse, and that saddens me.

I am grateful for the opportunity to help him feel more loved and more comfortable than he would feel in a nursing home. So far, Ted remains ambulatory and capable of conversation. His sense of humor seems to be so basic to his character that at times I think it is unimpaired. But, Alzheimer's is robbing Ted of more and more of his memory. His most cherished childhood memories are fading. Bits and pieces of memory show up when I least expect them, but overall he tends to recall things that never happened more than things that did. He can still spin a piece of an interesting story, but it is largely fictitious, and he repeats the same small piece over and over in a space of just a few minutes.

Ted can still dress himself, but he needs more and more help finding the clothes and remembering to change. Last night I followed to his room to ensure that he had what he needed to prepare for bed. He glanced at the rocking chair that Barbara always uses to stage his clean underwear, etc. for the next day. "Well there are my pajamas" he said as he walked toward the chair. But then, "No, wait a minute that's not right". I pointed to his bed where the covers were turned down and fresh pajama's lay spread out, just as they are every evening. "Oh, there they are." he said.

Ted still goes to the bathroom on his own. He can still shower himself once we get him into the tub with a bench to sit on. Yet it seems that he is faltering a bit on even such rudimentary tasks.

Upon arriving at the dinner table, Ted always asks "Where do I sit". I always show him the same chair and the only place setting with a half glass of milk.

It is more difficult for Ted to understand even our simplest statements. Part of that is his very poor hearing, but a bigger part seems to be his inability to think as fast as he once did. I have read articles and watched documentaries about advanced Alzheimer's. I am sad to say Ted is likely to get much worse. I listened the other night as Barbara patiently explained that she was his daughter, not his wife. That she was Barbara, not Juanita. He still remembers all of his children's names: the four B's, Bruce, Barry, Brenda, Barbara. However he has no memory of where they live or who their spouses and children are.

I do not deny that it is difficult to hear him repeat the same sentence or two again and again. It can be frustrating trying to communicate something as simple as "I am going to get the newspaper for you". Often when he is awake, he talks to himself non-stop. He is not loud, and we just tune it out. He usually amuses himself quite a bit, and I am glad for his sake.

The hardest part is watching Ted diminish. He is still Ted, but he is fading away. I am never sure what bits he can remember from an hour a go, from a month ago, or even from his childhood on the farm. It is difficult to initiate any sort of conversation on his worst days. Ted is still here, and perhaps he still will be so long as he is conscious. Yet I find myself beginning to grieve. The loss starts before death.

What Is Left When Your Stuff Is Gone?

photo credit: Alone by elward-photography

Barbara usually helps Ted with his bedtime routine. Tonight she is taking a walk, so I gave Ted the before bed pill and went into his room to set out pajamas for him. I had to look through his clothes to find a clean pair of PJ's. He has a standing rack with a dozen or so sport shirts and slacks on hangers. He has a small three drawer dresser for socks, underwear, t-shirts and PJ's. He has a few sweaters, a windbreaker, a winter coat, a couple of pairs of shoes and two caps. That's it for wardrobe.

We moved Ted's bed from the assisted living apartment to his room in our house. We use the dining room table that he and Juanita shared for many years. Ted has two easy chairs, a walker, two canes, and a wheelchair.

Ted had a small TV, but we replaced it with a digital one that gets better reception. We have to help him use the remote to turn the TV on or play a dvd.

Ted's car is parked in front of our house. He hasn't been able to drive for years now. But he likes knowing that he still owns a car. Whenever we take Ted anywhere, we drive his car. Often Barbara takes him for country drives or out to get an ice cream cone.

As I looked through Ted's small dresser (the bottom drawer is empty), it suddenly struck me just how stripped down his life is now. Sometimes I yearn for a simpler life. I realized I was looking at life reduced to its simplest.

Ted has few possessions. Barbara manages his finances (thankfully, he is quite financially secure for an 89 year old widower). We supply his meals, fetch his medications, and deal with other of life's details for him.

Alzheimer's has robbed Ted of most of his memory. It is very difficult for him to make new memories.

What is left?

Ted is still here. His personality is still uniquely his own. His sense of humor remains. He loves and is loved. He is generous, patient, and kind. He enjoys seeing wild life of all types, but especially the local deer population. He enjoys sharing the memories he still has. From time to time he mourns deeply for his wife of 67 years.

Ted teaches me every day. He teaches me what is, after all, truly important.

Shared Memories

photo credit Sharing by gemsling

Soon after Juanita's death, Ted spoke to me about what the loss meant to him. Of course, first and foremost was her 68 plus year role as his wife: lover, friend, and constant companion. Another aspect that Ted identified was Juanita's role as "his memory". Initially I focused on the fact that Juanita had an extraordinary memory, especially for family, friends, places and dates. It wasn't just Ted who turned to her for help remembering. The whole family appreciated her ability to help us recall everything from the place and date of a family reunion twenty years ago to the names and locations of far flung relatives.

"When I lost Juanita, I lost my memory."

Ted wasn't referring simply to how she had helped him since it became clear that Alzheimer's was robbing him of his past. Juanita had always acted to bolster Ted's recollections by offering details as needed. Of course, as the Alzheimer's progressed, Ted needed more and more help.

Recently it dawned on me that Ted's remaining family members are now serving as his memory for much of his past. Although Ted can remember his childhood on the farm in great detail, the years after that are gradually but inexorably dimming. As recently as two years ago, Ted could remember his job as high school principal and the names of some of the teachers who worked for him. Now he retains little of that. Recent memories are even more problematic. Ted is slightly aware that Bruce and Brenda acted as his caregivers while Barbara and I spent a month with our daughter and grandchildren in Norway. However, each day since we have returned he remembers less and less about that period. As I reminded Ted of our trip and his other children's visits, I realized that I was acting as his memory. I have known Ted for almost 30 years. I have heard his stories along with a great deal of family lore from others. Now that we live in the same house, I am aware of many of his day to day activities: visitors, outings, anecdotes. Now I am able to remember big pieces of what he has lost.

I work hard to listen carefully to the things that Ted does remember, as well as his thoughts on events as they happen, but I am also aware that I can prompt him with information that he would normally have stored away were it not for the Alzheimer's. Sometimes the additional information puzzles Ted. "Bruce was here last week?" he might ask in surprise. Other times, my inputs help him call up more fragments of memory than he would otherwise. "Yes, I remember that Brenda took me out for a walk by the duck pond." Of course, I have no idea how accurate his recollections are, but I see how gratified he is to feel that he is remembering.

All of us who interact with Ted can serve him as holders of memories. I find it best to avoid asking him what he remembers, but it can be helpful to offer him a starting place regarding some event. "Brenda flew home yesterday" I offered. "Oh, that's right, she was here for a while. Where is her home?"was Ted's response. I reply, "Wisconsin. She lives there with her husband John."

I see that all of us depend upon one another for shared memories. We recall them. Discuss them. Embroider them. Past, present, and plans for or speculation about the future are all rich parts of a relationship. We vary in our ability to contribute to a discussion of each. Our differences strengthen the bonds between us when we use our gifts to serve one another.

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.

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.

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.

Marriage

photo credit: The Power of Love by Nelson D.

Ted and Juanita were married for 67 years. Their love grew beyond my imagining. I saw it in how they interacted in recent decades. I saw it in how they interacted in Juanita's last weeks. I also see it in how Ted grieves. The first thing he does when he awakens is to look next to him to see Juanita. For more than twenty thousand awakenings she was there. Now for dozens of awakenings, she is not. It seems unlikely that Ted can live long enough to have Juanita's absence feel normal. Although it hurts to see Ted's grief, it is inspiring to consider how wonderful and how long his marriage was. It is a joy to know that such love can exist in an imperfect world, between two imperfect people.

Ted tells me that although Juanita has died, their love is still very much alive. I believe it will live on after Ted dies too.