Parkinson’s and Dementia
I’ve been reading many of your posts. I was shocked to realize that I was not sympathetic. I wanted to shout at everyone, "what’s your problem?" You are articulate and still have your brain if not your body. My poor shell of a husband has PD and now dementia. Barely says anything and only seems to get a break when asleep.
Of course, I do understand I am being completely insensitive. But what I would give just to be able to have a conversation with him the way you people are doing.
Sorry x
Hi Carol, I hear you and my heart goes out to you <3 Feeling frustrated is normal when it seems like others have something that we don't. It can be an especially difficult feeling to cope with. I'm really glad you feel comfortable venting here - that's what we are here for. Thank you for keeping the community a safe space for others to share a range of experiences with PD. - Lauren (Team Member)
Hi
just wanted to check in on you and your husband. How have you been doing? We're here anytime. Hugs, Jessica (Team Member) I very much feel what you are saying. My husband was diagnosed with Parkinson's at age 48. He is now 70. He was able to work for 10 years until he was diagnosed with Mild Cognitive Impairment. Given the high level of his job and its demands, he was forced to leave and they were unable to offer him another position at a lower level. So, he retired at 58. His impairment stayed fairly stable for another 5 years until he decided to get DBS to help with dyskinesia in 2020. It has been a speedy decline since then, though his motor skills are still relatively good. His diagnosis changed to dementia and it's rapidly increasing. We often think we would now trade the dyskinesia for his cognitive abilities. It's a horrible disease isn't it? Just know there are others out there struggling. One day at a time. you have been coping with it for 22 years. Wow. My husband is now in a nursing home. There are pluses to that but minuses too. Staying positive takes a lot of effort. Knowing others are struggling to does not help at all. The man in the room next to my husband died the other day. I found myself thinking what a relief for him and his wife. Not proud of such thoughts, but surely it’s all about quality of life.
He was actually fine for the first 10. Most people didn't even know he had Parkinson's. The next 5 were showing more disability, people could tell he had Parkinson's, but we were still pretty active physically and he was still driving. The last 5 saw more disability. I had to take over everything. The last two years have been so much worse and now the dementia is advancing rapidly. He is otherwise very healthy, so it's complicated to get care for him. He is getting combative and I'm a little scared. We cannot afford to have him in full time care at this age (70), so I'm trying to last another few years. And I completely understand your feelings about death being a blessing. The dementia is so cruel to both of us. Lonely, hard and isolating. For me, I would rather not be in that state for years before dying.
I also understand how the nursing home could be good and bad. My younger sister passed away recently and was in hospice in a care facility for 3.5 weeks before she passed and it was something every day. Why isn't there a "moon shot" to find a treatment for dementia? Or at least an all out push to create more affordable and humane care centers. Right now our choices are marginally good nursing homes or expensive cruise ship like warehouses that look good, but the care isn't that much better than the nursing homes?
