Are visits to my Dad worth it if they are also agitating?
My dad is 83. He has renal disease, dementia, COPD and recently lung cancer. He doesn't want to do treatment, and his doctor's best guess is that he has about 6-12 months. :( So people are talking about coming to visit him, both extended family and friends. The only thing is, he doesn't really remember any of these people anymore, so it is agitating for him when people come. I think he feels like a failure in a way that he can't remember them, like a sense of expectation he can't fulfill. It was so sad when my sister came from out of state and he didn't know her. He has been crying about it ever since, saying, "What kind of father doesn't know his own daughter?" Mostly the agitation passes quickly and he won't even remember somebody was here by the end of the day. So I also wonder if the visits are appreciated on some level, even if it just breaks up the monotony of his day. He used to be very social and liked to tell stories, and I see that a bit when people are here. I just can't decide if the agitation is worth any benefit I he is getting.
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1. His friends and family gather round, he doesn't reliably recognise them, he gets upset and reproaches himself.
2. He is reaching the end of his life and he can't see his family and friends for the tumbleweeds.
It's easy for me to say which I think is the more easily handled unattractive choice, because I'm not the one who has to be with him when he's upset. But the way I see it, you can do something to manage visits so that he enjoys the company, but cut it short if it's not going well or he's not having fun. Whereas if you discourage visitors, you're eventually going to find yourself having to explain why everyone seems to be avoiding him. Rather you than me.
The thing to do, then, would be to spell out to visitors a few rules before they arrive, such as: keep conversation light and easy, and let him be the one to introduce memories if he's having a good day; no hand-wringing or wailing about his loss of recall, or not to his face at least; be prepared to be shown the door if anyone gets upset, with no hard feelings.
If they can't hack it, then they'd better not come. You'll need to be fairly blunt with them, but that's better than your father feeling isolated, isn't it?
You might tell people ahead of time that he won't recognize them and coach them how to avoid conversation that could upset him. Anything that begins with "Do you remember . . .?" is taboo.
I like the way my mother's physical therapist handles this. EVERY time he comes in, he looks straight at Mom, speaks in a loud voice (she's nearly deaf) and says, "Hi. I'm Matthew. I'm a physical therapist. I’m here to help you to walk better."
Mainly what’s significant to your father is the present moment. An exception would be conversations about periods of time your father still remembers. My mother's memories, for example, stop back when she was working at a department store afternoons and weekends during high school and then into her early 20s. Usually, she speaks as if I am her sister.
It’s nice to have visitors come in and break up the monotony of daily living. They just need to understand it’s not about them. Here’s hoping you can find compromises that will make these experiences pleasant for all concerned.
I am not one to turn to meds, but if he is facing his mortality within 1 year, there is no sense in waiting. There are "happy pills" that will trick his brain into a little contentment. Then he may enjoy and appreciate the love his family wants to share with him. Talk to the DR about the meds, no time to waste.
Best wishes to you in this very trying time.
L
It is a good idea to have soft music on when visitors are around as it is soothing to someone with dementia. Visitors should not continually try to correct your dad...if he thinks Mary is Jane (as an example), then Mary should be Jane since he will cause less agitation. Lastly, if a doc has prescribed medication...definitely use it! Each person is different but medication for someone who has dementia can truly change their lives for the better. I have the honor and privilege of working with people with dementia and I sure do hope this note helps. Most importantly, I hope that you know that helping to dignify someone's life, especially when they Re facing the end of their life, is truly the most important thing you could ever do. It is life changing for you and it is God's work.
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