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.