One year anniversary in the nursing home
My husband’s one year anniversary in the nursing home was last March 13th. I had decided that then would be a good time to update my blog but every time I start to write I get distracted or plan frustrated because I cannot seem to get all I want down in black and white. So while I wait for my night time meds to kick in maybe I will be successful in updating our lives.
The decision to place Dick in a nursing home was not an easy one. I think I fantasize about bringing him home at least once a day. In other words I am still overwhelmed by a sense of guilt that I am not keeping him at home. I was so determined to care for him myself but as the years past, that decision began to cost me my own health to the point that I was no longer able to care for him. I keep hoping that I will get my strength back enough to bring him home. But the reality is that over the last year his condition has deteriorated considerably. I honestly do not think I could really pull it off even if I got my back stronger.
I knew going in that he would never be cared for as well in an institution as he would at home. I assumed though that his basic needs would certainly be covered. Reality seems to be much different. The most positive thing about the home he is in is that it is only a half mile or so up the road so can be there if there is a crisis within minutes. It is true that I have more time to myself so I am able to go to physical therapy and doctor appointments for myself these days.
Still I feel that most of my time is taken up with Dick’s care. For much of the past year I have spent several hours a day with him. Instead of taking part in the few activities available for the residents, Dick tends to stay in his room all day. He really hates the place and frankly I don’t blame him. My visits are the only thing good in his life. Of course this makes me feel badly the days that I am unable to get over there.
Visits have gotten increasingly awkward. After the first couple of weeks, I frankly ran out of things to talk about. There are too many things I must not bring up because they make him feel he is missing out on so much. For many months then, I read to him. He would often have the book out waiting and would hardly let me sit down to read because he was so interested in the story. During that time he had a sweet roommate who was unable to talk due to a stroke. He was rarely in the room but when he was there both men got a kick out of listening to the story. That roommate passed away at the beginning of the year.
Then came a series of new roommates. The first was an Alzheimer’s patient from a large Italian family. Someone was always visiting and they were always loud so we could not hear ourselves as we read. That roommate was moved after he beat Dick up and Dick landed on the floor. Yeah, not too pleased about that one. Anyhow, the story reading had to be stopped for a while. By the time we got back to it, Dick was no longer able to follow the stories.
We watched TV together for a while then until the shows became too hard for him to understand as well. So we are back to talking. Conversations are difficult for us because of Dick’s aphasia. Over the past year the mouth and tongue muscles have deteriorated so much that he cannot form the words that he does know. I guess I get maybe 5% of what he is saying. Sometimes my interpretation is so off base he looks at me as though I am crazy!
To further explain things, Dick’s initial strokes left him right side affected. He has gotten increasingly weaker. And now his vascular dementia has gotten much worse. It is difficult to figure out what he is thinking about because his aphasia makes his expression of thoughts unclear and he can suddenly return to a topic that we had moved away from and it takes me a while to realize that we are not even on the same subject.
All these communication problems make visiting difficult for me. I want to make them special but so often we both end up frustrated.
THEN the battles that I have to deal with just to get Dick’s basics needs covered are never ending. Some are big issues like making sure he gets showered. Some are financially difficult because his clothing is constantly being lost.
Sometimes just the act of walking into the building has me grumpy, angry and ready to make heads roll. I expect that Dick be clean and groomed. Instead when I take his socks off I find that they have imbedded into his skin because they have not been changed in over a week. He can go a month or more without a shower unless I haul him in and do it myself. Why? Because he has the right to refuse. So the shower aide comes in on Wednesday and asks Dick if he wants to take a shower. Dick (of course) says, no. The aide is happy because that is one job that doesn’t have to be done that shift. The same thing happens on Saturday. Unless I intervene this will continue and he will go without a shower.
THEN you have the aide come in and ask if he wants to use the toilet. Dick’s response is, no. Of course, he has been incontinent and NEVER feels the need to go to the bathroom. There might be an aide on the ball who will ask if he needs his pull-ups changed. Dick doesn’t feel the wet so again answers, no. Happy aide goes off without having to do that nasty job. Then I come in and find Dick soaked through pants, bedding and/or chair. Then I am the one who ends up changing him only to find that he is bright red and close to skin breakdown.
Dick’s original tube of toothpaste from over a year ago is still almost full! He has lost several teeth and I cannot get them to sign him up for dental care. I regularly find his fingernails crusted with poop. And I am the only one to get him to shave. I also am the only one to cut his nails or make sure he gets body cream. I had to take all his sweat shirts home because even with weather in the 90s they are still dressing him in the sweats because they are easy to put on.
And talk about clothing. I have taken three or four completely new wardrobes in for Dick. His clothing is all labeled with his name but still his clothing is regularly lost. I finally started taking pictures and supplying the home with a photo inventory of everything I take in. But this week I have to force them to compensate for all the clothing lost since late last year. ARGHH. This week I must go through the photographing and doing an inventory of summer shirts.
Oh and I have to mention that Dick has control of the heater in his room. For reasons that only make sense to a demented mind, he likes to turn on the high heat. It is slowly cooking him and his roommate but I cannot get anyone to prevent him from doing it.
OK so this is a whiny rant. And while this is just a fraction of the things I deal with these days you can easily understand why I want to bring him home so badly. But it then it becomes a matter where I am not being taken care of. I simply cannot physically handle the lifting I was able to do a few years ago. And if he is at home I cannot have the ability to retreat when his words cut me to the core.
You see, dementia has taken the most wonderful caring man and turned him into someone who is incapable of understanding the needs of others. He can feel bad if he knows I am upset and he is the cause (so I know he still loves me and wants the best for me) but he cannot understand how he hurt me. He now does things that seem quite cruel but they are simply that he does not have the filters anymore to understand what his words and actions do to other people. Knowing this doesn’t stop me from feeling the pain. Then I get impatient with myself for my response. Sigh!
After reading all of this to my daughter she felt that it sounded really depressing. I don’t want it to be depressing. It is the way things are. Not perfect. Still somehow we keep going on and try to treasure the precious moments when we really area able to enjoy each other.
Over the past year I have struggled with the idea that I had thrown in my caregiver status. That I was a failure and looked down on by those who are still caring for their loved ones at home. The fact is that my job has just changed. I don’t worry about having to get up in the middle of the night. And I can steel a day to go to the beach with my girls. But I have taken on the necessity of trying to get the nursing home to provide at least the minimal care for him. I’m not so sure that it is any easier other than at least some of the heavy lifting is done by others. Therefore I find I need support just as much as I did before.
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