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.

Prejudice

I want the world to make sense. I look for patterns, cause and effect, anything that can help me to address current problems or prepare for coming challenges. My desire for understanding and competence has a downside. I may prejudge based on biases and partial truths.

Ted's experience of Alzheimer's stretches me and reminds me to beware of prejudice.

Yesterday, Ted became restless. I was in another room when I heard him open the patio door and go out onto our deck. It is the first time in his five weeks here that he self initiated going outside. I found him at the far end of the deck gazing across a grassy field to the forest.

"I saw two deer here yesterday" says Ted. It is true. He is fascinated by the local wildlife. Nonetheless I am surprised that he can remember that specific incident. Most of his experiences each day vanish from his mind soon after they occur.

"I could walk down those stairs to that grass". I mentally shrug his statement off as the wishful thinking of someone who has long since lost such capabilities. However, there is no point in contradicting him. "Sure" I say "you could do that." This is one of those times I decide it might be best to redirect his attention. "If we go through the house to the front door we can walk out and see the big tree the neighbors cut down."

"Let's do it" says Ted. He is seated in his wheel chair and pulls himself along with his feet on the floor. I offer to push. "I've got it" he says. We come to a tricky bump at the front door threshold. I offer to help him over it. "I can do this." And he does, even though it requires him do sort of a hop in his wheelchair that I have never seen him do before. As Ted wheels down the ramp to the front driveway I am tempted to hold the wheelchair handles in case the slope is more than he can handle, but by now I have learned to hover nearby but resist the urge to intervene. He manages the downward slope just fine. Then he begins to move up the grade of our concrete driveway.

"Pretty steep here" I offer. "Not too bad" says Ted. We spend a bit of time checking out our front yard and doings at the neighbors, and then we head back to the house. "Want to see the hot tub?" I offer. It is the first time we have toured the front of our house this way. Ted brightens. "Sure".

Ted wheels his chair very close to the end of our front porch but I resist the urge to hold onto the wheelchair in case he misjudges where the edge is. After I show off the hot tub and discuss how we use it, Ted speaks up again. "I could walk right down those stairs". Four steps, no railing. But again I think it is just wishful thinking on his part. I am shocked when Ted rises from his chair and haltingly walks toward the steps. It is harder than ever for me to resist physically intervening. I position myself for a catch, or at least the ability to break his fall.

Ted puts one hand on the wall near the head of the stairs and makes his way down with only a bit of swaying. By now I am astonished. In the preceding weeks he has treated the two small steps to our sunken living room as though they were a treacherous glacial crevasse. What is going on?

"You have a walk right around the house to stairs to the back deck, don't you". How could Ted know that. This end of the house is invisible from the inside. We move across the patio that the hot tub sits on. I show him that the walk is possible, but incomplete. Rocks. Rough ground. There is a stretch of ten or twenty feet that I have not finished.

"That's O.K. I can still walk there." Now I'm really concerned. But once again I position myself as a human cushion. "Since I haven't finished this part maybe you'd like to hold onto my arm", I offer. Ted sees the sense in that and we make our way down the rough little slope to the foot of the back stairs to our deck. A full one story flight of stairs.

"I could walk right up those stairs and be on the deck again". How could he have oriented himself so well? For weeks I have had to remind him where his bedroom is when he is sitting in our dining room in plain sight of the door to his room?

In recent weeks I have worried that Ted will struggle to negotiate a high curb in a parking lot. Now he stands before ten or twelve steps and says, "I can go right up these".

I mention that we could back track and find a much shorter flight of stairs. No dice. Ted has clearly determined to tackle this flight. I stand behind him and wonder if I will be able to stop a fall or will just join him in tumbling backward down the steps. One step. Two. Three. Sometimes shaky and swaying. But he grips the railings tightly. Before I can even worry much, he is at the top of the stairs pushing open the sliding door and headed for his chair in the dining room.

We had left the wheel chair back on the front porch. The walker is in the house. Ted has navigated a hundred feet including two sets of stairs and a small rocky slope.

"I could go right up those stairs." He points to the long flight from our kitchen to the upstairs bedrooms. Before today he has made it clear that he never intends to go to the second floor of hour home.

"Yes, you could"

As I write this, it is the next day. Ted is still abed. I cannot plan on another day like yesterday.

The days differ greatly. He may sleep all day on chairs and sofas. He may grieve the loss of his wife and of his memories. I may have to remind him who I am.

Or he may walk upstairs for a tour of the second floor.

Location

A View through the Afloat Sculpture

by roberthunt1987

We take for granted the fact that we know where we are and how we got there, both in space and in time. I realize more and more that dementia messes with Ted's ability to know. It reminds me of the classic movie story line where a character suffers amnesia. The plot involves their search to understand who they are and how they got there. However, dementia throws in some very different twists to the plot.

Some days Ted remembers much more than he does on other days. On the good days I think he remembers that he sometimes has bad days. But on the bad days, I don't think he can remember that he has good days. It doesn't even have to be a new day. If Ted thinks deeply about the very vivid memories he has from his childhood, it is almost as if he is reliving those moments. Then suddenly he realizes he is an old man in a place that is only vaguely familiar. The thread of life events that lead up to now has many broken spots and the pieces that do remain get jumbled out of order.

Sometimes I can help Ted by anchoring him with a few of the memories that so far are rock solid. Yesterday he could remember his boyhood and the farm, and he could vaguely remember that he went to college. But he had forgotten how he and Juanita had gotten together. He had forgotten that serving in the Pacific during WWII had interrupted his life.

I said, "I bet you remember being helped with finding the home keys in your typing class." He lit up immediately. That was a key event in his getting to know Juanita during high school Then I said, "I bet you remember standing behind a tree, trying to make yourself as small as possible as a Japanese plane strafed you". "Yes!" he said, "It's so vivid I remember every detail. I remember touching spots where the bark had been shot off the tree, but no bullets had penetrated to hit me."

I went on to recount such things as the fact that his college education had been interrupted by his military service. On the other hand, the GI bill made it possible for him to attend University of Illinois and finish his degree.

Eventually it was as if Ted had regained his footing following a particularly violent earthquake. He regained the sense that he was anchored in time and space, rather than adrift and helpless.

Of course, I wonder what the future holds. Will those most vivid memories fade away and leave Ted without an anchor? Yet I can only wrestle with what is. My view of what will be is too limited to spend much time thinking of.

Pride

Photo by justinbaeder

Ted has lived with us for about a month now. Until today, I was pretty impressed with myself about how I was handling it. Please understand, I have been stressed and I feel that. Nonetheless, I felt like I was doing a great job. I had researched and considered and developed all sorts of strategies for helping Ted through one of his tough days. At times it had been a bit of a strain to be patient. But, hey, I was succeeding!

Deep inside, I knew that I was due for a fall. I knew because I heard myself think, "Hey, this caring for a person with dementia isn't that big a deal if you do your homework and stick with a few basic principles. Why do people say it is so tough?" I needed a strong dose of humility. I got it.

I woke Ted from a nap so that we could have lunch together. He began to relate a story that he had told me a dozen or so times before his nap. The story may have had a core truth in it, but the variations were huge each time he told it. He and Juanita had been on a beach somewhere and met a wildlife photographer. That much was consistent. Not much else was. The beach was in Florida, Oregon, Brazil, or somewhere else. Juanita and Ted were photographed by accident. Photographed for a fee. Photographed when they tripped a camera sensor. They never saw the photo. The photographer printed the photo on the spot. He mailed the photo to them. They were both in the photograph. Only she was in the photo. Those are just a few of the variants.

Ted became increasingly aware that his story was not consistent. He was very frustrated by his inability to get the details right. I listened calmly. I offered encouragement while acknowledging his difficulty. I tried to nudge Ted toward the positive aspects of the memory. None of that seemed to help for more than a second or two. I came up with what I thought was a very clever idea. I grabbed one of Ted and Juanita's photo albums and said, "I've got a job I think you'll enjoy. Search through these photos and see if any of them are the photo from the beach." The idea was dead on arrival. It was worse than dead. It stirred Ted up even more. There were many photos of Ted and Juanita with other folks. Ted became more and more disturbed as he realized that he had no memory at all of those other folks. He also realized that if Juanita were here, she could walk him through each photo, identify the people, and let him know when it was taken.

"I've lost my memory. I've lost Juanita. I'm not even a person any more. I am just a blob that exists."

"But Ted, you know your room here. Let me show you. See how many familiar things are in this room!"

"Yes, they are familiar, but I can't remember why they are. I don't know where they came from"

There were several more failed attempts on my part and I was beginning to panic. What if Ted was like this a lot? How could I handle it? I thought I knew what I was doing. Wrong.

I thank God that Barbara returned home from her walk about that time. She listened to Ted and said something like "Oh daddy, you will be o.k." And in a few moments she had him laughing and joking as if the whole melt down had never happened. I saw her do it, but I don't understand how she did it.

O.K. Time for the truth. The truth is that I will come up against difficulties with Ted that I will not be able to handle well. I will survive. But I hope it is a long time before I get that warm fuzzy little thought about how good I am at this caregiver business. I really hate to pray for more humility, because it almost certainly would require additional humiliations. I don't want to pray for more patience. That always seems to require suffering.

God, forgive me. For I do not know what I do. Thank you lord for sending help when I needed it most. Help me lord to feel compassion for every caregiver, regardless of how "good" they are at care giving. Help me to care more about helping Ted than I do about proving how capable I am.

I need you God.

Awakenings

cross at surfer's memorial by Wonderlane

Many mornings, the first thing that Ted notices when he awakes is that Juanita is not there with him, as she had been for 67 years. As he gazes around the room it is somewhat familiar, but he doesn't know where he is. If we hear him stirring, we go in to greet him. But other times, he has to sit up in his bed and wonder what the closed door on the opposite wall will open to.

Ted does not know who owns this house. He doesn't know the buildings floor plan. He doesn't know what city he is in. He doesn't know how he came to be here with us. So the morning ritual is often answering those questions and many others for him. It is not unusual for him to ask the same question over and over with only short intervals between each time.

Usually the fog lifts a bit, and Ted knows that he is with Barbara, his youngest daughter. Then he wonders where Bruce, Barry, and Brenda are. We remind him. He usually remembers that Juanita has died, but he tends to think it was years ago instead of weeks.

Often it is not a promising start. Today was one of the days where Ted morosely ate a slice of toast, drank a bit of coffee, and then wanted to sit quietly in his arm chair. He spent most of the day in the chair with only a bit of interaction with Barbara and I. Suddenly, this afternoon he was ready to eat a bit. I sat with him at table and we began to discuss various philosophical questions. For example, how did paper money come to be? Why do people with a lot of money labor under the illusion that they are safe from life's problems? How is it that some of the folks who labor the hardest earn the least? Once we have started, a talk like that can easily roll on for an hour.

A new thing happened today. Ted loves to sit where he can look out at the fields and trees that surround our house. He watches the birds at the feeders. But usually he is concerned that he will be too chilly if he were to go out on the deck. Today he hinted that he was ready to try.

I got his coat and dried off a deck chair. We sat together and enjoyed being outside for an hour or more. Humming birds zoomed to the feeder just above our heads. Crows commuted to the woods from the valley below. Song birds staked out the tip tops of trees and serenaded us.

After a while, Barbara called us inside for some bratwurst, beans, and oatmeal cookies.

Dinner complete, I went off to putter on the computers. Barbara sat at the piano and began playing hymns that Ted knew well. Ted sat on the bench next to her and joined in singing.

Now Ted's day is drawing to a close. But for a while he laid on the sofa and sang the hymns without Barbara and the piano. He closed his eyes and began to speak to Juanita. He talked about how glad he was that she was in heaven, but how much he missed her. He told Juanita that he thought he would be able to join her soon, but he sometimes wondered if he really would.

Somehow the words of "The Old Rugged Cross" echoed in his mind and he began to realize that his sins were atoned for and he only had to wait a while longer before joining Juanita for eternal life in the presence of God.

He wept for a while with relief. He shared the revelation with Barbara. After they talked a short while, they agreed that it was a good time for going to bed, while he was still filled with the assurance that he would be reunited with Juanita soon.

The days pass quickly. There are good times and bad. Yet it seems that every second is precious and significant, if only I can open my mind to it.

Grieving

Many folks believe that grief must be processed to enable healing after a loss. I don't know if it is necessary, but I do believe it is inevitable. Ted has grieved the loss of Juanita, and it is likely that he will continue to hurt intensely for some time to come.

Juanita was Ted's first love, his only girlfriend, and his wife for 67 years. Together they endured economic upheaval and war. Together they raised four children and influenced many others through their work as teachers and his work as a high school principal. They traveled the world and enjoyed their times at home.

Ted's memory is impaired by Alzheimer's, but his memories of Juanita remain. He may be confused about exactly when she died, but the grief is still fresh each time he considers his loss. I cannot carry Ted's grief for him. What I hope to do is support him as he carries that load. The best support I can offer is listening carefully to what Ted has to say. I may offer encouragement, but it must not be advice or pious platitudes masquerading as encouragement. Listening well means that to I will experience a small part of his pain. I am greatly tempted to shield myself by spewing my thoughts and my nostrums. Resisting that temptation is a requirement if I am to serve Ted well.

May God grant me the strength.

Stories

I was more than a little afraid that I would get very bored talking to Ted. He does repeat himself quite a bit. And I can't talk about current events or news because Ted has no memory of more recent things. It surprised me that eating and talking with Ted are relaxing and interesting times. Barbara works to keep our meals on a consistent schedule. Lunch at noon. Supper at five thirty. Ted is often quiet as we begin eating. All that is needed to animate him is finding the right topic. I pitch in thoughts here and there, but my main intent is to allow Ted to give his ideas on any given subject.

Today we started a long conversation by observing that geese fly in a V formation. Ted speculated on how geese organize themselves. That lead to a discussion of leadership. Leadership led to a discussion of bums (tramps or hobos). We went on to the phone system in 1930's southern Illinois. And so on.

Ted has a lot of stories to tell. I have heard many of them before, but with a few gentle nudges I can usually encourage him to give a new take on an old story. Sometimes it is a new plot twist. Other times it is a new character. Ted's remembers a great deal from his boyhood. However, his memory is poor enough to allow him to rearrange and repopulate stories without struggling over whether they are consistent and accurate.

Even when I realize that Ted is confabulating, I find his point of view interesting. He is a kind and compassionate man. He is mystified at the mean spirit he has seen in some folks. He is generally patient and full of grace as he describes most people.

Just when I think that I may tire of listening, Ted generally indicates that he is tired of talking and moves to his armchair for a rest.

Mirth and Melancholy

Photo by dbking


We tend to believe that mirth and melancholy do not mix. We see them as immiscible as are oil and water. Caring for Ted reveals this as a profound fallacy. Early in the day my heart is torn by his melancholy recitation of questions: where am I, who are you, did I live here before, why does this place seem familiar. A couple of hours later, we are filled with mirth as Ted describes his older brother's babysitting technique.

Ted's brother Dwight seems to have been something of a hellion. When Dwight was tasked to simultaneously plow a field and care for his younger brother, his approach was unique. Dwight told Ted to lay very still on the ground. With horses and plow, Dwight managed to turn over the earth in such a way that Ted's arms and legs were buried. "Keep your head up Ted", Dwight advised. "You will want to be able to breathe."

We were curious. "Ted, didn't you cry?". "No", says Ted "I just held my head up and sort of looked around. I wasn't afraid." Later Dwight need to finish up the plowing near were Ted lay. So he unearthed his younger brother and sent him scampering back to the house.

"Didn't your Mom ask why you were so dirty", we asked. "No", says Ted, "My brothers and I were always dirty. It wasn't much of a consideration."

Mirth and melancholy are mingled every minute of every day. Children starved somewhere as we ate our lunch and laughed at the detailed memories of a man bereft of the ability to create new memories. For now we are perched between heaven and hell, but the day will come when the oil of gladness will separate from the sorrowful flood of pain. Those who choose joy will ascend. Those who cling to their independence will sink into an abyss of loneliness, forever.

God is love. He calls us to our eternal anointing with oil. We can only have it if we trust him to provide it.

Listening

What most people need is a good listening to. Often the people who need it the most are the most difficult to hear out. Little children need to be listened to, but they often articulate poorly. Busy adults tend to obsess on all that they have to do. Lonely and hurting people want to share how bad they feel. Foolish people want to impress you with how much they know. People with dementia repeat themselves, over and over.

Although it is pleasant and valuable to listen for enjoyment or edification, it is just as important to listen as an act of kindness. Ted has lived with us for a week now. Before he moved in, I heard repetitive stories from him a few times a week at most. Now I listen to him repeat stories multiple times in a day. Kindness includes paying attention, reflecting back what I am hearing, and asking questions that encourage Ted to continue and expand on his topic. Occasionally I can respond with a pertinent anecdote of my own. However, I must guard against the tendency to dominate the conversation. I want to strengthen the bond of understanding. I do not want to one up Ted.

I suspect that listening will be more difficult as weeks pass. I am task and goal oriented. I make a list and check it off. Offering the courtesy of listening to meandering stories can be a struggle. I am eager to be off to do this or that. However, I sense that it is more important for me to strengthen a weak area than it is to insist on utilizing my strengths. I have read that God is glorified in our weakness. I believe it. Now I must live it.

Memory

Ted's memory has been declining for at least five years now.   It is seldom clear to me what he can remember and what he can't.  It varies from day to day.  It varies by topic.  Song lyrics seem to last longer than many things.  I find that especially puzzling, because I have had a life long inability to remember more than just fragments of song lyrics. Even when I was tasked with teaching my Sunday school class the words to "Away in a Manger",  I had to keep a copy nearby.   Ted remembers multiple verses of songs like "Little Brown Jug", songs that just go on and on.

Lately Ted does not remember who I am.  Nor does he remember where he is.  Each time he awakes from sleep or from a nap,  it goes something like this:

Ted, "Where am I?"
Kent, "Oregon.  Philomath, Oregon".
Ted, "This place looks familiar.  Have I lived here before?"
Kent, "This is Barbara's house. You have visited here often.  Lots and lots of times.  Now you live here."
Ted, "But I have lived here before haven't I?"
Kent, "You have lived here for six days now.  You have your own room."
Ted, "But have I lived here?"
At this point I have tried yes, no, and "just a bit".  No answer seems satisfactory.
Ted, "Whose place is this?".
Kent, "It is Barbara's house.  I am Barbara's husband, Kent".
Ted, "Where is Barbara?'
Kent, "Shopping and taking a walk

The exact sequence varies a bit.  The overall conversation is usually repeated several times before we move on to other matters.  Tonight I intervened by asking Ted if he liked the smell of cornbread.  I even went and got a pan of cornbread to remind him of the smell.  We started talking about the food he ate as a boy.  Soon he was ready to leave his room and come have dinner.

Once Ted starts down memory lane regarding his boyhood, he seems to have total recall.  He can describe his parents' farm in great detail.  He remembers trees, farm animals, his Dad's habits, his Mom's routines, his brothers, their pets, all the nearby neighbors, and much, much more.

In the early years of his dementia,  Ted had similar detailed memories of being a soldier in the Pacific during WWII.  Now he has vivid, emotion laden visions of his time in the army, but the facts are muddled or missing.  He often elaborates with details that sound reasonable, but are made up.  Occasionally when he is deeply involved in speaking of his time in the Pacific, the accounts begin to come into focus.  Details come back.  Other times, no amount of prompting seems to help Ted have a clear picture of his time in the war.

Most of us worry about our memories failing as we grow older.  We forget where we parked our car.  We forget a friend's name.  I find that especially true when I have a lot going on and I am stressed.  The memory loss from Alzheimer's is a whole different thing from those "senior moments".   It is common for Ted to ask the exact same question over and over again in a single half hour.  His eyes may light up when he hears the answer. " Oh yes, that's right.  I remember now."  But five minutes later, it is as if we hadn't spoken of the matter at all.

I see that the repetition will be a challenge for me as the days and weeks pass.  Tiny bits of progress may happen.  Tonight Ted remembered how to get from our dining room to his room and the attached bathroom.
However, there are also bits of regression and loss.  I begin to see that Ted will never remember my name again.  Ted still remembers the four B's:  Bruce, Barry, Brenda, and Barbara.  But even that core memory is slowly fading.

I tell myself that answering Ted's questions are somewhat like rocking my children when they were babies.  I carried them, swayed, and repeated simple phrases over and over again.  At times it was tedious.  Especially if I was tired.  Mostly it was a simple, peaceful time.  I adjusted my expectations on what to expect from a baby.  Now I am adjusting my expectations for Ted.  Repeating myself is just as meaningless and just as meaningful whether I sing "Hush Little Baby" or when I say "This is Barbara's house".  Both are ways of expressing love.  I can never love too much.

Ted Moves to Our Home

Ted with Juanita a Few Days Before She Died

Ted was married to Juanita for 67 years.  She died two weeks ago.  Since then we have brought Ted into our home so that we can provide the sort of help that he needs as his disease progresses.  This is a huge change for Ted, for Barbara, and for me.

At times I have been reminded of our first child's birth, 26 years ago.   Julia's presence in our home changed everything.  We had prepared a room for her with special equipment and supplies.  Julia depended on us every hour of every day.  We loved her very much, but we had little experience in caring for a child.

Ted is not a child.  Yet there are similarities.  Our lives have been profoundly changed.  We worked to create a safe comfortable space for Ted.  Now we have a walker, a wheelchair, grab bars, and a ramp to our front porch.  Ted's Alzheimer's has progressed to the point were he needs someone to be immediately available to him at all times.

There are also many differences.  Ted communicates well.  He has an excellent sense of humor.  For now, he can dress and feed himself.  As a baby, none of that was true for Julia.  Ted's condition will very likely deteriorate as weeks and months pass.  Julia grew and learned.  Ted will become more dependent.

Alzheimer's impairs a person's ability to store new memories.  It also gradually robs the person of memories from earlier in life.  When Ted awakes from sleep, he has to ask us where he is.  He still remembers his daughter, Barbara,  but he doesn't know who I am unless I explain it to him.

Ted is fortunate in that his personality remains kind and good natured.  He has faith in God.  He knows he is loved by his whole family, although he has trouble remembering many of them or anything about their current lives.

Ted knows Juanita has died.  He mourns her loss deeply.  However, he also understands that their separation is temporary.  Ted will join Juanita in heaven when his time on earth is complete.  He is resigned to being patient, yet he longs to be reunited with Juanita.