Helping Those Who Care for Parkinson's Patients
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| My husband has had some very strange behaviors recently. They are usually in the middle of the night. He wakes me up saying something is going on and various things. He fidgets and his tremors are much worse when this happens. He just seems to be totally out there and confused. It happened again last night. It hit me this morning that he is having hallucinations and I feel devastated. I'm starting to worry that he shouldn't be driving. I don't know what to do or how to handle it. Last night I managed to stay calm and get his room straightened back up, bed remade and got him settled. I just need to vent I guess. So appreciate you guys "listening." Thank you |
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| You need to call his neurologist and tell him/her about this. Change of medicine might help. |
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Mom is on year 16 of her diagnosis. She's had sound and smell hallucinations for at least 10 years. Mostly just "rumbling" or "machinery" or "trucks revving up," and occasionally smells (usually smoke--I read somewhere years ago that that is a common hallucination for Parkinson's). Occasionally over the last 10 years when she has had med changes, she has hallucinated children, workmen in the house, an old lady smoking, etc. The last 2 years or so she's having visual hallucinations more and more. She will say there is a truck or car in the driveway, even when there is no way for her to see the driveway from her chair. But mom hasn't driven since 2007, three years before her diagnosis. ... I just try to calmly tell her that whatever it is...isn't there, or she can't see the driveway or the yard from where she is sitting. I try to rub her arm in a comforting way and usually that works. I know there is a medication called Nuplazid that might help, but mom is in the middle of adjusting to the Vyalev pump, so everything else is on hold for now. They tried her on a Donepezil and Mematine for dementia, but mostly those are for memory/thinking I guess. They didn't seem to do much for mom at this point. |
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| The confusion continued and significant weakness set in including fever. I took him to the ER. He was admitted tonight with elevated liver enzymes and unknown cause of fever. His daughter is spending the night so I could bring my exhausted self home for a few hours. Thanks for your insight and concern. |
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If the fever is caused by infection, that will temporarily worsen the Parkinson's, including confusion and even hallucinations. (Although I guess a high fever could cause hallucinations in anyone.) ... A useful thing to keep in mind (that took me 5-6 years to find out) is that 1) infection, 2) anxiety/stress, 3) med changes (not necessarily Parkinson's meds changes), and 4) injury can all temporarily make the Parkinson's (and all the issues that stem from the Parkinson's, not just the "movement" issues) worse. Whenever the underlying issue is resolved, the Parkinson's will return to the baseline from before the issue started. The problem is that some of those things are not always easy to identify. |
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I hope he's feeling better July. High fever isn't good for anyone and can make them hallucinate. Once (a long time ago) I walked into my 5 year old son's room to check on him when he was sick and he said "Mom why is your head so big?" I couldn't run to the phone fast enough to call the dr. who said that can happen with high fever Give him baby aspirin. But that was nothing compared to some of the stuff hubby said like "There's a woman in a red dress and her son going into the garage" and stuff like that. I'll keep praying for ALL of you. |
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| I need to vent. He was in the hospital last week with high fevers, delirium, pneumonia, metabolic encephalopathy. He is home now but memory is terrible. Have to remind him constantly to take medications, rest vs exercise. BP shot up yesterday, had been fine but high in doctor's office. Increased his Losartan and I am monitoring. Still up. Fixated on laundry. Came home Friday and has done 3-5 loads every day. I dried a load that was in the washer from last night and took them out. He put them back in the wash. I told him that at some point I need to do my laundry. He said would I tell him when I am going to do it. I said do I have to make an appointment to do laundry in my own home. Home health nurse will be here soon. I'm anxious to see what her BP reading is. I keep thinking I'm at the end of my rope and something else happens. I know I'm not the only one. Just need a little support right now. Thanks |
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I understand about the laundry. Mom can't do laundry (the washer/dryer are downstairs, but she couldn't do it anyway). But she goes through towels, clothes, blankets, so often that there are at least two loads a day. I have to save mine up throughout the week and hope I remember to put a load in Friday night to wash over night and dry in the morning. ... Sometimes things end up in the wash that are perfectly clean, which drives me crazy. Similarly, she has the poise pads and the briefs/diapers during the day, and on occasion she will take her pajama bottoms off, and then rip the sides of the briefs off before I can get in the bathroom to see what she's doing, and then she claims everything was wet. Sometimes NOTHING is wet, but the briefs are already un-useable after she has ripped the sides off. ... However, she does go through a lot of poise pads that are indeed wet, sometimes they leak, etc. She often has really bad sweats from the PD that requires clean shirts and pants. And she drips food on her shirt whenever she eats. Plus the infection site on her belly from the Vyalev apparently isn't entirely done draining, so every time I think I can leave the bandage off, it starts draining into her shirt again. When I think of all the literal blood, sweat, tears, urine, feces, drool, and puss I've cleaned up over the last 10+ years (with both dad and mom), it seems completely unbelievable. |
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| Thank you greeneyed. I see how much worse it will get. That may sound morose but I'd rather be prepared. I can't say I have handled any of this well, but I continue to try. My thoughts are with you. Thanks so much for sharing with me. |