My husband was diagnosed with Parkinson’s in 2015. The Neurologist in the past 3 years thinks he has Multiple System Atrophy. He fell last year and tore his quad. Has been in PT and aqua therapy for almost 1 year. He needs a shoulder reverse. Still cannot walk. In wheelchair. He will not let me get help. It seems like we are at doctor visits weekly. The Neurologist thinks he’s a little past the middle of the PD/Parkinson’s. He referred us to a PD Clinic. I don’t find it helpful but he does. I have worked as a professional for over 40 years. I feel like a terrible caregiver. I know there resources for aides, etc. he’s not open to them. I feel very bad for him. Married almost 43 years. What can I expect? How do you cope as a caregiver? Thank you.
She passed away about a year and a half later in a nursing home. In later stages, she could only eat soft food and had difficulties swallowing - oftentimes, a reason for death is choking, so beware of that. She was constantly thirsty and had dry mouth, no matter how much she drank - I'm certain that messed with her electrolytes. She was constantly in pain because of the tightening of her tendons and rigidity; her hands became deformed and she needed braces to try to keep them straight. Everything hurt; she was on a pretty heavy dose of morphine - it really didn't help much, just took the edge off so she could sleep - sometimes the pain would exhaust her. Many have bouts of unexplained crying or laughter; unfortunately, she cried a lot. She had horrible bed sores because she was unable to move or even get to the bathroom herself.
If you'd ask me what eventually took her, I'd have to say I don't really know - she had a catheter and I could see the changes in her urine and I believe her kidneys were shutting down.... hence the "multiple systems atrophy". She began sleeping more and more - sometimes for a day or two and then she'd suddenly pull out of it. The last time, she was down for 7 days straight - no food and no water, and she passed at a very frail 85 lbs.
I couldn't have possibly been a caregiver for her, although I wanted to. The level of care she required far exceeded my abilities; also, at that time, I had two teenage kids at home who had many activities between them. I hope you have the ability to have a caregiver in the home; but, if not, I don't know how you do it. Do the best you can, but be honest with yourself to determine when you just can't do it anymore. The time will come, just based on the level of care this disease demands. The rigidity and pain adds complexity that many others don't. My heart goes out to you - feel free to message me anytime.
sudden drop of blood pressure when getting up.