Life and Lyme

Muddling Through Life with Lyme Disease

Caretaking is a tricky business. One minute it’s simply doing the housework, making sure things run smoothly, cooking, and going to a few doctor appointments. This scenario doesn’t mean that the caretaker is on easy street, but it does mean that you can be in a state of denial about the future. Last month, I bought a Costco-size box of garbage bags that will last for about two years, an outright act of defiance when the person you are taking care of is ninety-five years old.

My cushy caretaking job suffered a major blow the second week of January. Dad passed out on the way to his bedroom to go to bed. I heard a loud thump! around 7:50. Me, who is normally atrocious with dates and times, noted both. I have developed the habit of marking each noise of his nighttime routine until I know he is safely in bed. I probably know his habits better than he does.

Oddly, when I called out to him, he answered forcefully that he was fine, just fine. After a few minutes of silence, I went to see what was going on. I found him in the living room trying to pull himself up from the floor. He was disoriented and he couldn’t tell me what happened. That scared me. My lifeguarding skills came in handy at this critical juncture. I asked him the questions I had been taught to ask and checked him over, noting the large goose egg on the back of his head. I told Dad the same thing I told most people who needed care when I was at work; let’s just let the EMTs check you out, you don’t have to go anywhere with them, that is your right. He argued that he did not need them, and didn’t want them. I told him I understood, but that I would not be able to sleep if I was worried about him (I am not above using old-fashioned guilt to coerce him into doing what I know is best). He grumbled, but agreed.

Thus began a long two week odyssey of getting him the care he needed. Dad is in remarkable shape for his age. Virtually all of the medical staff commented on his vitality, the fact that he takes only two medications (one for cholesterol and one for his thyroid) and has no mobility issues and/or dementia. This state of health in someone so old is obviously rare in their experience.

I’ve taken his good health for granted, and he has too, but his body is simply getting old. He can’t hear very well, and his sense of taste and smell has diminished. He has leaky valves, and his aortic valve has deteriorated. The official name for this is aortic stenosis and it had progressed to severe.

All this time between knowing his valve needed replacing and actually having it replaced was stressful in its own way. He couldn’t do too much, because he could have a “heart event” at virtually any minute. He had to drink more water and a lot less wine. He couldn’t take the garbage out. I had to accompany him anywhere out. It wasn’t difficult, just intrusive. He did as much as he could, like dressing up for Valentine’s Day. I posted the picture above on Threads with the caption ‘My 95 year old dad dressed up tonight. All I have to say is the men I know better step up their game if they want to look this good at 95’. It got over 5,000 likes, by far the most of anything I’ve ever posted. He was bemused, but pleased.

The cardiologist on call recommended a valve replacement using a TAVR procedure. This procedure is relatively new (the FDA approved it in the US in 2012 for patients at high surgical risk. We’ve had to jump through several hoops to get approval since then. He had an angiogram with contrast, and an ultrasound of his leg veins. We had to go to another cardiologist to get Medicare approval. That appointment was interesting. He told Dad that he would usually not approve this procedure for someone Dad’s age, but that after meeting him he saw why the other cardiologist had pushed for a TAVR procedure.

At each of these appointments, we went through the same thing: “Ninety-five! Wow, you’re in great shape. What’s your secret?” He doesn’t really have any secrets. His daily routine isn’t all that noteworthy. He has Jimmy Dean pork sausage on an english muffin with coffee and orange juice every morning for breakfast. He has a glass of milk, a salami sandwich and potato chips, or fruit, or cottage cheese and peaches for lunch, and whatever I make for dinner. He drinks four or five glasses of wine every single night, and gets in about 2,000 steps on a good day. His genes must be special, and in the years Mom was alive, his diet was much better and his wine consumption much lower. He played tennis and golf for years, and still does all of the yard work.

I personally have come to believe that part of his “secret” is that he does not see or think of himself as old. His outlook isn’t always rosy, but overall, he wakes up every day thinking it will be a good day. He makes an effort to keep up with news about science, health, tennis, and golf. He has a girlfriend. The small delusion that he needs to stay healthy because she needs him for manly things goes a long way.

He is also under the delusion that he could do fine without me. Every once in a while, when stressful things like this arise, we’ll have a conversation where Dad tells me he feels as though he is holding me back from my life. When I ask him what life is he holding me back from, he inevitably brings up dating. At this point in my life, I’d rather have a TAVR procedure than date. The conversation usually ends with me pointing out that I chose to be here to help him, and him telling me that he could get along just fine without me. Like Dad’s need to be needed, I have the delusion that I am being useful to him. I didn’t think I needed that to be acknowledged, but apparently I do.

I was stressed out, the weeks of uncertainty, appointment wrangling, and managing his schedule eating up all of my energy. So I was mad inside when he said that. For the next three days I pouted and moped in private about his delusion that he could, in fact, do just fine without me.

I am no stranger to creating my own delusions, I’ve had to in order to live with chronic Lyme disease. I don’t like it when people try to poke holes in mine, so I wouldn’t be the one responsible for doing the same to his. Let him think he’s doing me a favor. Let him think that he is still absolutely capable of taking care of himself and his life. His small delusions allow him to age gracefully, and I would do well to follow his example if I am lucky enough to live to be a grand old age.


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