Caregiving 2.0

 

My cousin Bud (left) with his mother and my other cousin Tom
(both my aunt and my cousin Tom are gone now)

Yesterday presented new challenges in my role of caregiving for Bill. 

Bill has had trouble swallowing for several years now. His esophagus is shot. 

During his last hospital stay they of course noticed that problem when they tried to feed him regular food. Bill cannot eat regular food. First he has no teeth. He stopped wearing his false teeth almost three years ago when he has his first strokes. He only wore the top ones anyway. 

The doctors advised me to either have an operation to replace is esophagus or have a feeding tube inserted into his stomach. Neither one of these are feasible options at Bill's age. He's closing in on one hundred years. First would the operations be successful and if they were successful, how long would it take him to recover from the operation? 

A feeding tube in his stomach? I don't think so. First of all Bill would lose one of his few pleasures in life, tasting his main course (morning and evening) of oatmeal which I puree with a banana and oat milk. Then there is the added caregiving tasks that would fall on me. Inserting the feeding tube, taking it out. I looked up the side effects. Diarrhea is one of them. No thank you. As it is I change his Depends daily now which usually heavy with his urine. By the way, the Depends work great for containing urine. Just so you know in case you're ever entering that lovely territory in your life's journey. Just saying.

So what I do is first grind up Bill's oatmeal to a powder then I add water and put it in the microwave to cook it. Out of the microwave I put more oat milk in it and a very ripe banana. Bill loves bananas. Then I puree the whole concoction. It's now liquid which Bill drinks.

Bill usually chokes when he drinks his oatmeal/banana puree but lately he's really been having problems. Struggling with gagging and sometimes throwing up what he just swallowed. This isn't a pretty sight folks. I can't stand the sounds so I almost always go out for my daily walk while Bill struggles to eat his oatmeal puree. 

Yesterday I was gone for about forty minutes taking a leisurely walk around Casa Tipton-Kelly and talking to Pat on FaceTime.  I was surprised when I came back in to hear Bill still coughing and gagging on his oatmeal. Oh how I wish I could arrange for him to have a new esophagus. I've often told him that he is being punished for leading such a healthy life. His body is just wearing out. He doesn't have cancer or diabetes or any other illness, just a body that is worn out. Just like his old Jeep that went for almost twenty-five years then a few more years after he gave it up to the garage where he used to get it repaired. 

Bill hasn't eaten meat in over forty years. He's not one of these self proclaimed vegetarians who broadcast their vegetarian. He just stopped eating meat. For many years he only ate peas. Yes, peas. But when his esophagus gave out he had to give up peas. Oh, he also ate a lot of candy but the past year or so he doesn't even eat candy. He does like sugar though. I have to put three heaping tablespoons of sugar on his twice daily serving of oatmeal/banana puree (I forgot to mention that earlier). He also liked ice cream but he stopped eating ice cream (only vanilla) about a year and a half ago. He does like Oreo Thin Lemon cookies which he eats all day. 

Because he doesn't eat grease laden food and meat is the reason I think he's lasted this long. He stopped smoking back in 1967, the same time I stopped smoking after seven years of smoking. I think Bill had smoked for about twenty years. 

So yesterday presented a big challenge. If I can't feed him his oatmeal every day, what to feed him? A banana smoothie? I do feed him two egg custards a day. This for his protein which has made a big difference in the edema in his lower legs. His legs are doing great. He walks every morning by making about twenty "laps" around our finished basement. His bedroom is off to the side in our basement. 

We tried talking it over last night but Bill is difficult to have a conversation with at the end of the day. He suffers from what is known as "Sundowners." Bill doesn't have dementia but he does wind down big time at the end of the day. It's almost fruitless to try and have a conversation with him late afternoon and early evening. Last night was one of those frustrating attempts at a discussion with him. After much frustration I finally gave up. 

This morning we had that conversation again and we both came to the conclusion that his mouth is too dry. Lately I've been having the same problem, a dry mouth. I sleep with my trap open thus when I wake up in the morning my mouth is like a parched desert. This has affected wearing my partial dentures. At my last visit to my dentist she notice that problem and she advised me to get this tablets to take before I go to bed. It helps prevent dry mouth. They work! Now I can wear my partials and enjoy tasting my food again. I think Bill is having the same problem but I can't give him those tablets. Too confusing for him to figure out how they stick to the roof of your mouth. So what he does instead is take one of his lemon cookies and put it under his tongue. So far that seems to help. 

I tell you folks, I wasn't made out to be a caregiver. But like my cousin Bud (same age as me) who took care of his invalid mother at home for the last few years of her life (she lived to be in her nineties too), when I asked him "How do you do it?" He said "You do what you have to do Ronnie!" He not only had to deal with his mother's early dementia but he had to change her colostomy bag every day. God, at least I don't have to do THAT. Thank God Bill can still go to the bathroom by himself. Haven't had a Number Two accident in his Depends for about a year now. Another friend of mine has to deal with his wife who has a myriad of problems. In addition to her problems she's in constant pain. Thank God Bill isn't in pain. Although it sounds painful when he choking while eating his food he says it's not. It's painful for me to hear him though. But that is me, old selfish me. Then here is my longtime friend who is in the final stages of his ALS. I can't even talk to him on FaceTime which I did for years when he was first diagnosed with ALS nine years ago. He can't move his legs at all, totally bedridden. Can't even talk now. Just gibberish. He has a full-time paid caregiver via Medicaid who comes in six days a week to take care of him at his home.

Maybe we're living too long folks. What do you think?