I'm new here. My dad is 91 and was diagnosed with Parkinsonism maybe 7 years ago. His latest neurologist says his Parkinsonism may be PSP. He can no longer walk, even assisted on both sides because his legs are permanently contracted in a crossed position. His other worst symptoms are asthma and episodes of dementia. When the asthma and dementia occur together, he fights his caregiver who tries to put on his nebulizer mask to deliver the albuterol medication so he can breath. All the agitation of course makes the asthma much worse and he's truly in danger of not being able to breath at all. The episodes usually happen in the middle of the night. During the day, the nebulizer mask is no problem.
Does anyone else have experience with asthma or fighting the caregiver? At times my dad has apologized after hitting the caregiver. He must be mortified because it's so out of character for him.
Just a bit more about us. My dad lives with my mom (who has Alzheimer's) in a senior condo and has 24 hour private care. I'm there at the condo every day from lunchtime until after supper. My dad is usually able to greet me and respond briefly when I ask him how he's doing. Otherwise, he doesn't talk very much. His voice is so quiet you can barely hear it. The caregiver and I get out for a walk every day with my parents in good weather. We just got a great new wheelchair for Bones, a Quickie Tilt in Space. During the day, he mostly watches the television and the bird/squirrel feeder. Usually he can feed himself, but is needing a bit more help with that lately. Sometimes he turns dinner into a science experiment and just plays with it. My best days are when I can get him to smile.
Thanks for listening and for any input. Have a wonderful day!
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carlam
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Hello. I'm sorry not to have anything to offer except sympathy. You are in such a difficult place, but it seems your parents are being well looked after, and I can't imagine how you could do more. Your parents must have done a good job to have such a caring child. I can only suggest that not being able to breathe can certainly bring on a panic, and psp can make it difficult to separate dreams from reality. (My father suffered from asthma badly all his life, so I know how hard it is to watch that sort of suffering.). Hang on. And keep in touch! Peace, Easterncedar
Thanks for your note of sympathy and support. I just wrote you a reply, but then clicked on your profile before I submitted and my reply disappeared. Note to self--don't click on any links before submitting :).
Anyway, I see you are a New England neighbor! We are lucky to live here aren't we? What a beautiful season.
We have lots of asthma in the family so we know how scary it is, but the funny thing is my dad never had asthma until recently. I didn't know whether it was common in PSP. I guess the trick is to calm my dad as quickly as possible. My mom often escalates the situation with her agitation. The caregivers are afraid my dad will hurt her in his dementia because his grip is like a vice. With her Alzheimer's, she can't remember the episodes from night to night. Thankfully it doesn't happen every night. I am just so thankful for my dad's wonderful caregivers who are able to cope with it all. It's such a hard job!
Yesterday was a good day for Bones. He was more talkative and active than usual. I hope today is a repeat! Enjoy this wonderful weather while it lasts!
Hi, I really understand your feelings. My husband has PSP and my mother has Alzheimer's. It's very hard to come to terms with!
Sorry I can't help with the asthma part, thankfully, one problem we don't have.(touch wood!!!)
Please use this site as somewhere to turn to for support, rant, rave, kick and scream as much as you need to! We will help, if only just to listen you. Let's face it, sometimes that all we need! Nobody can improve your situation, but we can be there for you!
Hi Heady. Thanks for the note of support. This is a wonderful group. Luckily I also have a very supportive hubby, who comes to have dinner frequently (and often is the cook) with my parents. My son and daughter are also great and join us for dinner, but they are back in college now. My parents' current caregivers are doing an amazing job. Honestly, I don't know how they deal with my mom, particularly. I know it's the disease that makes my mom so mean to our primary caregiver who is black, but it's very sad.
Anyway, every day is a new day. Today is gorgeous here in New England with the fall foliage peaking. I bought a wheelchair van for my dad so we'll go for a drive and a walk on our local bike path.
Yes it is so gratifying to see a smile. It sounds like you ate do g an amazing job of keeping it all together. Keep those smiles emblazoned on your brain and in your heart. Those smiles are my trophies . I choose to remember them and let go of the rest of the really hard stuff. Vent them on this site .I really helps. It also helps the rest of us keep things IN perspective. Hugs
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