Sometimes the Solution Is Simple

From my years of visiting people with dementia at care facilities, I knew the general progression of the disease—short-term memory loss, confusion, changes in personality, long-term memory loss, inability to communicate, and the withdrawal into the person’s mind, or what’s left of it. I’m learning the many more symptoms and side effects of the disease, some of which are disruptive or even scary, such as sundowning (see http://www.mayoclinic.org/diseases-conditions/alzheimers-disease/expert-answers/sundowning/FAQ-20058511 for a brief summary) and hallucinations. Other changes are not on that scale but can be quite annoying and sometimes dangerous.

I didn’t know that some experience heightening of the senses beyond what many people have as they age—sensitivity to cold, for example. With Dad, sensitivity to touch was one of the first. That new watch Mom finally found for him that met all the criteria? It lasted a few days, if that. He could feel it against the hairs on his wrist. That never bothered him in what I’m guessing is fifty-plus years of wearing metal watch bands, but to him, now it was awful. (So now he doesn’t wear it and again complains that he doesn’t have a watch anymore.)   

Irritating with how much time she and his brothers spent looking for a watch, but not that big a deal in the grand scheme.

Then came the seat belt. That was a big deal. Dad didn’t start wearing a seat belt until Texas law mandated it. He didn’t like being told he had to, but the seat belt never really bothered him, or he never let on that it did, regardless of where he sat in the car. We stopped him from driving about a year ago, and the troubles began.

He usually rides in the front passenger seat because he cannot connect the seat belt in the back by himself. It’s a bit harder to reach, and he can’t figure out how to move his hand to click the pieces together, which triggers anger. Whichever location, the seat belt was too tight, especially against his neck. I know that sometimes the seat belt does lock tight while putting it on, but that wasn’t happening.

Dad’s solution was to pull on the shoulder belt and hold it away from his body. Not great, but he’d go forward only a few inches if we stopped short or were in an accident. About three months ago, he switched to stretching the shoulder belt so he could put it in front of his knee. I don’t know whether he decided the few inches was still uncomfortable, or he was being creative so he didn’t have to hold the belt. Regardless, we now had a problem.

Explaining the danger and telling him he had to wear the seat belt normally was not an option. He doesn’t understand explanations unless they are part of his reality, and sometimes not even then. His reality is the seat belt hurts him. He has no concept of the possibility of an accident and slamming into the dashboard or the air bag as it moves toward him.

Our initial solution was having him ride in the back seat if more than two people were in the car. He wouldn’t understand riding there if the front seat was empty. At least hitting the back of the front seat is a bit better. He made a nasty comment about being back there every time, but he went. Alice suggested one of the pads for the shoulder belt that cushions it. I got one but don’t think Mom ever tried it.

Then in early January, Mom realized that she can adjust the top position of the shoulder belt where it goes into the side of her new Equinox. She moved hers down a bit and liked how it fit. The passenger side shoulder belt moves likewise. She dropped it an inch or so, and Dad left the seat belt where it’s supposed to be.   

When I took him out last week, I checked my car’s belt system. Sure enough, I can adjust mine too. I lowered mine a little bit to experiment, and then before he got settled, I reached behind him and put his about where I figured Mom had set theirs. I told him what I was doing and why, and when he connected the seat belt, I asked how it was. “Feels just right.” All three times he had it on that night, he left it alone.

Problem solved with a simple solution!

At least until he changes again …    

Sisters

I write about what I do with Dad because, well, it’s my blog. I appreciate the support and praise from those who read it, but sometimes I fear that what I write might come off the wrong way. I didn’t plan to come back to the Houston area through a divorce, but I am grateful that I am here. One of those “God works all things together for good” situations. I’m literally down the street from them and work from home. If an emergency occurs, I can be at their house before I can finish telling my boss what’s happening.

I do whatever I can to help Mom and Dad, but I feel like with the time and attention he now requires, I can’t do enough. Thinking for yourself is hard enough. Thinking for two is overwhelming. At least to me. Mom does that all the time. She also plans her entire schedule around him and his needs—meals, errands, entertainment, everything. I just try to make the situation easier on her, and my work schedule gives me time in the evenings and on weekends to do that.

I’ve learned that “whatever I can do” really does make a difference, from washing dishes after a meal to mopping up the flooded bedroom at midnight to mowing the lawn. I’ve also learned that we need all of us to make the situation work. Whatever we each can do, and I’m grateful for the ways others are able to step up.

Enter Alice

My sister also lives in the neighborhood, less than a mile away. Alice has an odd work schedule because she is a therapist. Her office hours are during the day and into the evening to accommodate the schedules of her clients. She’s been working lots of Saturdays too after changing positions. That makes it more difficult for her to help out, but she does every chance she gets.

She’s set up her appointments so she can stay with Dad when Mom and I go to the Alzheimer’s caregivers’ support group once a month. She comes straight from work, a good 30-plus minute drive. Doesn’t even change into comfy clothes. That lets us stay for the entire meeting.

When Mom was in the hospital overnight a couple of years ago, Alice was the one who could shift her work schedule to go to the hospital that afternoon. I could have made it happen, but it would have been difficult because of my projects that day. My role was picking up what Mom needed from home and heading over as soon as I finished editing. Alice, Dad and I went out for dinner. I stayed at the hospital a couple of hours, confirmed Dad’s needs and routine, and helped set up stuff at home. Alice stayed the night with Dad. That meant I didn’t have to juggle caring for my dogs and Dad.

The flooded bedroom? We didn’t call her that night, but when her handyman friend finished replacing the sheetrock and doing all the plastering, Alice did a majority of the painting. I enjoy painting and wanted to help, but my arthritis makes it difficult, and my asthma makes it dangerous. She came after work. She came on days off. My part was fixing meals, which she willingly ate. Whatever we can do—it all comes together.  

Mom and Dad’s 50th anniversary was last June 11. For weeks, Mom had planned to go to a fancy restaurant. Dad developed acute pancreatitis the week before. Plans shot. Alice said to me, “Let’s cook a meal at my house for them to celebrate.” Cooking is not her thing. She’s a good cook, just doesn’t like it. We planned the meal and found little stuff to make the night special. She got the house spic-and-span. We cooked together. The meal out would have been wonderful, probably better food than we could fix, but we had a great evening. She and I also had a fantastic time together as we assembled their memory book. She hadn’t scrapbooked before, but my artsy-crafty little sis took to it as naturally as I knew she would. Her talents made it that much better.

Above and Beyond

She helps me too. When Alice found out last summer that I had taken over mowing the lawn because Dad didn’t know how to do it anymore, she said, “I can help with that!” She came on her days off. She came after work on Saturdays. Alice did some extra rounds during my insane time of editing personal statements. In Houston’s August–September heat.

Mom mentioned that she wanted some Christmas yard decorations that didn’t light up. I saw a snowman head made from fence boards at a neighborhood house. Took a picture. Told Alice what was up and asked if she still had some boards. She did. Her same handyman friend could cut them. The day she was going to paint it, I offered to help. I wanted to be involved so it would be from both of us. She fast-talked about how she wasn’t sure when David was going to get there and that she was a fast painter and that I had stuff I needed to do. I was a little hurt even though she said, “It will still be from you,” but I didn’t argue. I really did have other stuff I needed to get done. That afternoon, she texted that the snowman was done, and she was bringing it to Mom, would stop and pick me up. When I came outside, she got the snowman out of her backseat and grinned. She had a second one in there. The little sneak had liked David’s suggestion of making one for me too, and that’s why she wouldn’t let me help. Totally surprised me, and I really did need another decoration for my yard. The bigger gift was how she took precious time that day, in the cold, to do something for me.

In It Together

We’ve always had our differences, as is expected, but we usually get along. When something is important, we always come together. She’s there for me. She finds a way to make it happen. Moving the meal to her house when we had no electricity. Loaning me her car when mine was dead. Letting my crazy dogs out when I helped my daughter change apartments.

We met with Mom a few months ago to hash out end-of-life plans and were in complete agreement over who will do what. Mom asked if there was anything of theirs that either of us wanted specifically so they could note it with the will. Alice would like a couple of items; I would too. Nothing the same. I told her that I couldn’t think of anything in the house worth fighting over, much less ending our relationship, as some do. At that point, we will be all we have and need each other more than ever. She said that if we did want the same thing, we would just share it. I said that I figured I could take her. We’ll work it out. We always do.

Love you, Alice! Thanks for being my sister!

Live in the Moment

****Author's note: This is a completely raw draft. I made tiny revisions as I wrote it, but after it came out of my fingers, I couldn't go through it again.****

Dad and I went to the Houston Zoo in November. I knew he wouldn’t remember the visit later, so I took a bunch of pictures and created a book in Shutterfly for him. When he unwrapped it on Christmas, he seemed a bit puzzled. Mom asked, “Do you recognize anyone in it?” He turned to the first page, a picture of the two of us, and said that he did, “But I have no idea when this was.”

Like I said, I knew when I planned the trip, when we were there, when we left, as I edited the pictures and made the book that he wouldn’t remember the visit. Hearing him say it as he looked at the book was as striking to my soul as getting smacked in the head with a hard-thrown softball was when I was a kid. I had thought—hoped—that the pictures would bring it back to him.

Nothing.

It was no different from him looking at a picture in the newspaper. Well, I guess a bit different as he did know the two of us, but there was no connection to the action.

I sometimes hear people say to live in the moment. I know what they mean, and it’s good advice for many situations. Dad really does live in the moment now. His total reality is whatever he is experiencing at that moment, and it’s however he filters it through the functioning brain cells for memory.

He can know it is the two of us in the car, but as we head wherever we are going, there is no telling what neighborhood he will be in. Sometimes the Richmond or Sugar Land neighborhood is where he grew up. “I used to know lots of people who lived there,” he says as he points out the window, “but they’re probably all dead now.” It might be, “I had relatives who lived in that house,” when he sees a white wooden-sided home on a block foundation that is miles and miles from where his aunts and uncles lived. On the way to my church, it was, “I used to know someone who lived right there,” pointing to some relatively new house, “but I can’t remember who.”

As long as whatever we are doing isn’t too loud (grimacing at the level and/or making rude comments about the volume and who chose it) or doesn’t require more than a few minutes of concentration (“Bored.”), he seems to enjoy the moment. He loved being at the zoo. He enjoyed seeing the bluebonnets—and of course, all the places where to him everyone he ever knew lived. He was fully focused on the play before Easter. We have good conversations over a meal out. The Christmas lights in the neighborhood were wondrous. “They’re getting more and more of them!” That was his comment after New Year’s when few yards still had decorations out.

The moments seem to be getting shorter and shorter. No. They are getting shorter and shorter. They are also encompassing more and more areas. The questions of where we’re going or what’s for dinner come more frequently. He comments that he hasn’t seen a movie in ages and wants to go, not remembering that he was absolutely miserable, and made me and Mom miserable, when we saw one late last summer because it was too loud for him. “You don’t like how loud it is.” “I don’t?” He eats the food on his plate, looks at the serving dishes and asks if he had any of whatever it was he just finished chewing. “Why isn’t the light on outside?” referring to the one on the garage. “Because you didn’t turn it on.”

We still have many positives. He knows us. He can do some stuff for himself. Mom can leave him alone for short amounts of time. When he finally settles on a TV show, he is engaged with it, talking to the people on the screen that shows he understands what is happening. He asks about my dogs and laughs like crazy when I tell him what the Wonder Twins have been up to. He knew he was supposed to have a Christmas present for Mom. He works his way through the comics and still marks some that he understands. He wants to get out of the house to do stuff. He knows my daughter Meghan when he sees her, even though she doesn’t come but every few weeks.

Enter his reality. Live in his moment. We are still learning to meet him where he is. And that keeps moving. We’re also learning that we cannot always bring him to where we are. His mind doesn’t work like that any longer.

Live in the moment. Take what we have for today. For this hour. For this minute, sometimes. Don’t dwell on what we used to have with him, who he used to be. Memories are good. They are sustaining. But they can hurt. Don’t focus too hard on where we are going, who he is becoming. It’s not a pretend it’s not occurring. It’s avoiding obsessing over it. We know generally what will happen, but not the specifics, how much he will lose how fast. There’s only so much preparation we can make physically: the powers of attorney, the will and end-of-care directives signed. Or mentally for that matter. The knowing because of what I see when I visit at the memory care facility or talk with people at the caregivers support group doesn’t help much when the knowing becomes my reality.

Live in the moment. Treasure the grace of the tiny gifts of normalcy. Gather strength for the next moment that may well be a new, unwanted normal. Live in it together.