Naming Rights

In many, if not most, cases, names are important. In Texas, all sodas are “coke,” as in: “Do you want a coke?” “Yes.” “What kind—regular, Dr. Pepper, Sprite, diet?” But if I order a Coke, don’t ask me if Pepsi is OK. Choosing names can be fun. I have enjoyed figuring out the call name and longer registered name for my dogs. For instance, Toby was officially Toby’s Little Rascal because one-year-old daughter Meghan repeated “Toby” from my few ideas on the way home with him, and he had a hair spike like Alfalfa. Some people agonize over what to name their baby, even leaving the baby nameless for days rather than give the wrong one. Some don't care about their name. "Just don't call me late for dinner."

On the line “Named for” in my baby book, Dad wrote, “her very own self.” He and Mom picked the name together, but Dad chose the spelling. He didn’t think the feminine form with an i looked complete. The masculine form has been problematic as many people have looked for a male when calling my name. Others have automatically spelled it “Terri” when I give my name. It’s not a big deal now, but it used to bug me.

For a long time I abhorred my middle name. In good Southern fashion, they gave me “Terry Sue.” That’s what most of Dad’s family, especially his aunts and uncles, called me. It was fine until the kids on the block behind me found out, and one of them liked the University of Arkansas. They took to calling out “sooey pig” and oinking at me when I’d go play. I learned to avoid them and my name. An older adult friend took to calling me by both names when I was a young adult. I still hated it, but I tolerated it from Marianne as I did from my family out of respect for someone older and because she’s about as Southern as you can get. It was normal, not an insult. She has always said it as one word, with a slight lilt to the end and a smile, and in time it made me smile and became special to me. It’s a mark of our relationship.

When the name is missing

My pastor talked about names during his sermon this morning. His mom experienced a severe brain hemorrhage. A few days later, his sister asked her to name the three family members who were there. His mom said his sister’s and dad’s names but not his. His voice still reveals the ache—that moment when someone so close does not know who you are. Soon after, an occupational therapist gave his mom a pencil and paper and told her to write the alphabet. His mom wrote j. John said that it was another moment of pain. She didn’t know even the starting letter. But o followed the j, and then h and n. She might not have been able to say his name, but she still knew it. Still knew him. When she named him as a baby, she claimed him. She still claimed him.

I’ve been chewing on that today. I had never thought about naming a baby a way of claiming the baby, but it is, and it becomes an integral part of the person. One of the biggest hurts that I’ve heard people express about their loved ones with dementia is “He/she calls me by (some other name)” or “He/she thinks I am (pick a relation).” It’s one that almost always produces a catch in their voice. It’s not the running through siblings’ names trying to get the right one when someone is in trouble or a simple slip of the tongue. What the person occasionally adds but always means is “He/she doesn’t know who I am.” The claimed relationship is gone.

I heard the catch on my latest animal assisted therapy visit at the memory care unit. A husband came to see his wife. They were sitting together when I went to another area. When I returned, he was where I had left them. She was across the room staring in the opposite direction. He looked up at me and said, “Yesterday she was so talkative. Today, she doesn’t know me at all.” He left a few minutes later. He might have known it was part of the disease, but I could see the defeat in his body language as he walked away.

Fading away

Dad does still remember some family members’ names and those of friends he sees regularly. More commonly now, unfortunately, I’ll be sharing news from friends and family on Facebook, or Mom will tell me something that’s happening at church, and he’ll ask, “Who’s that?” or say, “I don’t know him/her.” Sometimes when we identify the person, “That’s Tim’s son” or “She used to go to the chapel,” he’ll nod in acknowledgement. Sometimes I can see that he’s made a full connection between the name and person, like a vivid memory pops up, because his expression also changes. Other times, even with some framework, he’ll shake his head and shrug us off, annoyed that he still doesn’t know the person.

Dementia has a set of stages its victims go through and common symptoms they experience, although no two will have the same journey. I don’t know, for example, if Dad’s going to start wandering. The end stage, however, is always the same.

So I do know that just like the names of those he hasn’t seen recently have already started vanishing, names of those he sees weekly will disappear. And then those of the people he sees daily. Or, he may still have the names but not the name/person combo. One day I could be Meghan or my sister Alice or maybe his sister Lucy. I could be niece Courtney one day and my mom the next. Or maybe within the same visit. They are all lovely people whom I love, but they are not me.

It doesn’t bother me that I’m a new person every time I see the residents at the memory care facility. I know it’s the disease. Sometimes, though, as I answer “What’s your dog’s name?” for the second or third time in an hour from the same resident, I see Dad in their faces. I have to consciously turn off that part of my brain, or I cannot finish the visit. Will not be able to go back.

I have known it’s because of my relationship with Dad versus the residents, but I think John stated it perfectly this morning. It’s Dad’s claim on me. He claimed me before I was born. Terry Sue if it’s a girl. When he and Mom stopped by the industrial arts competition when I was a high school senior, he put his business card on only one set of drafting blueprints. Because he claimed me, he marked it to let me know they had seen it. He has claimed me when meeting new people. “This is my daughter Terry.” He was always great about helping people. I nearly always took precedence if there was some overlap with a need because he didn’t claim them. I am his.  

In an earlier blog, I wrote about how I knew when we went to the zoo last fall that he wouldn’t remember going. Yet when he drew a complete blank while looking at the book I created of the visit, it was like a smack upside the head with a board. I have had a feeling it’s going to be the same or worse when we reach the point that he doesn’t know me. When he doesn’t claim me anymore.

But not gone

I left the blog hanging there this afternoon. I hated that thought. I still do. I hate that every day a tiny bit more of his memory—including that of our relationship—dissolves with the cells in his brain. I’ve been chewing on that ending and idea ever since. A few hours later, I realized that it doesn’t matter whether or not he will claim me. I will still be his. Always was. Always will be. Not even dementia can take that from us.

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!