Turning 50

I turned 50 this month. I’m not quite sure how I feel about it. There’s obviously nothing I can do to change it, and I don’t hate that I’m 50. I also don’t feel 50. I don’t feel different than I did at 49 or 45. Thanks to the rheumatoid arthritis, I hurt more than I did at 40 and am a bit more limited, but I don’t even feel like I’m 10 years away from that. I guess it’s not supposed to be any different since I just moved from one day to the next, but it seems like something should be different. Somehow, something momentous.

What I find really weird about it is remembering Dad’s 50th party. I was in my mid-20s. Not yet married a year. Mom and Dad went out to dinner with friends. My job was going to Mike and Marianne’s house to help set up the surprise party. The pretense was going there after dinner to play games. Probably chicken foot or Mexican train with dominoes. Friends filled the house, and Dad was totally surprised. We had a great time.

Dad was still sailing cargo ships. The captain. He could take a ship and her crew anywhere around the world. They had computers onboard then that took care of lots of stuff, made parts of his work much easier. Dad could still take out his sextant and plot where he was on the ocean almost to the exact spot. He wasn’t as fast as the equipment, but I know he was every bit as accurate. He was almost as good on land. If you needed to know where something was in Houston, he could tell you. And he was always up for a road trip.

He was also making pretty much anything he wanted out of wood. He had a huge radial arm saw from the 1970s and lots of other machines. We could give him a picture of something we wanted built, and he could draw up the plans and turn it out. His work was beautiful. I have a chest, shadow boxes, spoon boards, a couple of little tables from him. There’s a bigger chest at the foot of Mom and Dad’s bed that he made. A big chest of drawers divided into three levels. Lots of little boxes to hold decorative stuff, many of which were for displaying Texas flag items when they had the craft booths with Coomer’s Craft Mall.

He could put in a new electrical outlet or drop a new telephone jack into place. Light fixture or ceiling fan needed replacing? No problem. He built new fences for friends. Constructed platforms that could be assembled in different configurations for the new church building. He was almost as good as Mom helping in the kitchen at church or camp. He was king of the grill at our house.

Dad was always on the alert. He would hear the softest noise outside and be out the door to see what was happening. He even woke easily from a sound sleep, ready to defend us. We were safe.

He couldn’t do everything, but he sure could do anything he put his mind to.

As I write this, I’m babysitting him. He doesn’t stay alone much now. He would for a few hours at most, definitely when Mom would run to the store in the neighborhood. In the last couple of weeks, he no longer wants to be by himself. Mom isn’t comfortable leaving him either.

He’s restless at the moment. We’re watching NCIS. He didn’t care what we watched, but the master builder lost interest in a tiny house show within about 30 seconds. He chose NCIS. I wasn’t sure it was going to stay on because about 20 minutes into it, he was bored. The shows have to have horses running around or stuff getting blown up like on The A-Team to hold his attention, and even then, he flips channels like crazy. I Love Ranger Perry Van Dyke Eyewitness News makes for some interesting storylines, though. TJ Hooker will be on at the hour, which might have just enough action to keep him occupied for a little while.

We had a good time at dinner. He likes to go out and do stuff even though he doesn’t remember where we’re going or what we’re doing for more than a few minutes, sometimes seconds, and once we’re done, it’s totally gone. We had pizza at a nearby spot where you can still sit down to eat in the restaurant. He paid as I told him to get the 20 and the 10 out to cover the $23 and change. As he reached for his wallet, he feigned that he didn’t have it (which might not be feigning although he’d had it in his pocket 30 minutes earlier). I told him that he’d better because I wasn’t paying, and he’d have to wash a lot of dishes. He just grinned and got the wallet out.

I told him a little bit about work as we ate. He laughed when I mentioned the first time Uncle Karl let Mom come along with him and some friends when they were teenagers. He was mortified when she ate her pizza with a knife and fork. A little later I opened the local ABC news app to give us some more topics to talk about. Dad doesn’t do well initiating conversations much of the time, but with the right topic, he’ll usually respond to statements and questions or at least enjoys listening to the information.

Mom told us we could stop at Randall’s for a better snackie than the banana and yogurt and pudding at the house. We found a 7UP cake with a free bottle of 7UP because the cake is a new product and cherries for a great price. A lady was contemplating getting some, and I told her, “At $1.77 a pound? You have to think about it?” She started to cave, and I said to get a small bag. She said that she couldn’t do that because she wouldn’t get any once the others knew about them. Dad jumped in at that point with, “You need to get better at hiding it!” She laughed and said that yes, she needed to find a better hiding place for her stash. 

Now he has lots of explosions and fistfights to watch thanks to William Shatner. We had our cake, and he’s leaned back in the recliner. Mom is on her way home, and I will be soon.

Life is still good.

Good News

In June 2016, right before my parents’ anniversary and my birthday, we got another twist in Dad’s health with the diagnosis of chronic pancreatitis along with two stones and two cysts in the pancreas. One cyst had precancerous cells. Back in August I wrote about changes the diagnosis brought (http://rememberingfordad.blogspot.com/2016_08_01_archive.html).

I wondered at the time if this was the answer to “Please don’t let him die from dementia.” This is going to sound weird to those who don’t know how dementia progresses. I didn’t want him to have cancer, but I knew that it might mean that Captain James Scott Cummings wouldn’t fade away totally. Maybe death would come while we still had some of him. I can’t necessarily say it would be merciful, because having lost loved ones to cancer, I know how awful it is. However, there’s something about seeing the person and having him/her recognize me and whisper a special prayer or “I love you, Terry” once more. When the last stages of dementia take someone, you’re strangers. That tears at my heart like few other thoughts do.

So for the past few months, we’ve been adhering devotedly to Dad’s low-fat, low-spice, smaller portions diet despite his efforts to eat the way he always has and still wants to. We are now adept at setting food on the table to try to keep him from noticing it—for example, veggies near him, pasta/bread at the other end and/or behind something else. That way his “Can I have more of that” as he looks around has a better chance of being something that’s safe for him. We try to portion what he should have, such as putting a handful of baked potato chips on his plate and leaving the bag in the pantry. One of us will serve him at the table, partly for portion control and partly because he has trouble doing it himself with many dishes. Mom and I (and my sister or daughter if they are there) will often ask another to serve some food to us too. Not sure if he notices or not, but it’s a safe gesture so he doesn’t feel inferior somehow. We avoid some restaurants, including mentioning their names, as much as possible, and Mom now simply tells Dad, “You can’t have X,” at others. He even semi-willingly ate a salad with fajita meat at a Mexican restaurant instead of his enchiladas and controlled how many chips he had.

Follow-up appointment

The original plan following the procedure to destroy the cysts had been for another endoscopy to check the pancreas. That’s bad because anesthetics are hard on people with dementia. Thankfully, his gastroenterologist changed that to some specialized MRI that they were able to do at a nearby hospital instead of at the Texas Medical Center, as much as an hour away. It still meant no breakfast (often difficult, but really not good when you don’t understand why) or coffee (which I don’t even want to think about), but it was much easier on him and Mom.

They went back to the doctor to get the results last week. I was grateful for our friends who went with them so Mom didn’t have to deal with driving to or in the Med Center and so someone would be there when she got the news. I tried to stay focused on my editing.

When my cell showed “Mom Cell” around lunch time—while they were still gone—I felt a moment of panic. Her voice was off when she said, “I couldn’t wait to call you.” I couldn’t identify the tone. Not helping the panic. She almost couldn’t get the words out.

“The cysts are gone. … The stones didn’t show either.”  

Dr. T has multiple residents, students and fellows, working with him. A couple came in for preliminary questions and were authorized to share the results before Dr. T came to discuss them fully. They were amazed at the MRI. So was Dr. T., who is one of the best and most experienced gastroenterologists around. He’s seen a lot and did comment that the stones could have been hiding or shifted depending on Dad’s position, but he was still astonished at the results.

Mom told them all that people had been praying.

Where we go next

I thought the stones blocking the exit from the pancreas were causing the pancreatitis and that no stones meant we could relax some, and Dad wouldn’t need the expensive medicine to be able to eat. That’s not the case. He can have a little more food, but we still have to watch fat and spice. It would have been nice to stop that, but it’s become the norm, so it’s not that big a deal. Other than my missing my fried chicken and Jimmy’s chili dogs partner. The precancerous cells were in the cysts, so no cysts means those are gone, but I know if his body had them once, they could come back.

None of that means anything in relation to the dementia.

But it was good news—a fantastic answer to prayer. We needed it, and we are grateful.

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.