For those who care for someone with Parkinson's disease
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Happy Thanksgiving, all! We had a lovely holiday and travelled to be with my father, who is 82 and lives alone. We will drive home (seven hours) today. The day before Thanksgiving my husband got some kind of stomach bug and so was not able to eat Thanksgiving diner with us, but he was only down one day and the next day felt much better. This has led to some new issues, though. The last time he had an illness like that his balance was impaired for a week or so. This time it has affected his sleep. He normally does tend to mumble or yell in his sleep or thrash around, but the last few days those symptoms have increased dramatically. Last night he must have talked to me continuously for two hours straight! Talking out his dreams (he was dreaming about watching tv). At least three times he tried to get out of bed and go somewhere. I had to grab him and insist he lay down. This morning he does not remember it and I am exhausted from keeping an eye on him all night. I hope when we get home to our own house these symptoms subside. Our bedroom at home is on the second floor and I can’t risk him sleepwalking some night and falling down the stairs. |
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Hello JuniperSage: So glad you were able to go on your holiday visit and that it went as well as it did. I appreciate you sharing the reaction to illness that you have experienced with your husband. I will be sure to watch carefully for these kinds of reactions. Having an idea of what might happen makes it less scary for me; I can feel more prepared to roll with it. I hope you have rested up and that these symptoms have settled down. My husband is doing well. He actually smoked a turkey the day before Thanksgiving so we could just relax. We had charcuterie with our daughter and her husband and after they left we ate turkey sandwiches and watched football. Different but just taking it as it comes, being thankful and loving him so much. Happy holidays to everyone ! NoMatterWhat |
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Hope things are getting better for you JuniperSage. I highly recommend VioletV's book LOVE, DIGNITY, AND PARKINSON'S: from Care Partner to Caregiver by Terri Pease, Ph.D. I ordered in paperback form so I can read it in my spare time in the evening, but it is also available on Kindle. One of things you might consider that she talks about is sleeping in separate bedrooms. Think of it this way: If YOU aren't getting enough rest how are you gonna take care of HIM? |
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Well, here’s the update: the last few weeks have been hard. The sleep issues did improve greatly when we got home. But his balance and walking have stayed a bit worse and his difficulty with word finding has been more pronounced. We drove out to stay a few days at a small cabin we have and the second day there he fell into a shelf. I suspect he has a cracked rib, so we had to come home early and I’ve left a message for his doctor. The rib pain has made sleep very difficult for him, and that is not helping his other symptoms. For example, when he used to take dopamine agonists (Requip) he would have hallucinations, but they stopped when he came off that drug. This week they are back. That’s on top of the pain making it so he needs help with dressing, getting out of bed, bathing, and other things he can normally manage without me. I had to tell him I don’t want him to drive and he was not happy about it. I never thought we would get here so soon. He is only 64. But I am realizing that his various impairments in thinking and perception are evident frequently enough that they have crossed over from “mild cognitive impairment” to “early stage dementia”. More than anything, I would like to talk to him about all this. About how he feels about it, how I feel, where this is all going. But in reality, it’s too late already. He doesn’t have the focus or attention to talk about it or really understand it. It’s so very, very sad. On the drive home from the cabin, he talked nonstop all the way home. He can definitely hold a superficial conversation, but not a deep one. It feels so odd to miss someone so much when they’re sitting right there. He did get approved for SSDI. But since the approval letter, no checks have arrived, so that’s on my to-do list to sort out. Onward we go. |