My husband has Parkinson's Disease. He was diagnosed about 11 years ago; He's only 69. He cannot perform daily personal hygiene any longer and
he is full time in an electric chair and has been for about 4 years now. He got along pretty well until about 6 months ago. He began having more and more difficulty eating, transferring, bathing, toileting, talking, and even staying awake. As all of you know, PD is a very uncaring disease. Before he was diagnosed, he had lost all libido, lost his sense of smell, and lost excitement and enthusiasm for life in general. We've been living as roommates for about 25 years now. Recently, he's having great difficulty in the bathroom, toileting and bathing. He has occasional accidents and it's becoming difficult to handle. Our daughter was at our home with him yesterday, and she had to clean him up. It broke my heart. He is a big guy and I'm a pretty small lady. I work full-time to support us, as he has been on SS for several years now. It is getting to the point where I am going to have to retire and take care of him. But how? He is like dead weight. He cannot 'help' himself at all. I love him, but I won't lie...it's been very lonely. He sleeps most of the time I am around and stays awake off and on during the night playing games on his iPad. We haven't gone out to eat together for about 4 years and our social life is nil. I have my church, thankfully, and my girlfriends and workmates. If anyone has any ideas or encouragement, I am very open.
I can certainly relate to your story. My husband had a massive stroke back in 1996, and life as we knew it was gone. He no longer wanted to go out in public as he was embarrassed for people to see him like he was. Thankfully he never stopped me from doing what I enjoyed, even though it would have been nice to do some of the stuff with him, instead of my friends, but we made it work best we could. And of course over time he developed more and more issues, until he ended up bedridden in our living room, and under hospice care for 22 months. He just passed away on Sept. 14th, and I miss him. We both have been grieving for many years, for what we have lost in our relationships, our lives, and our husbands. I now have the final grieving process to go through, but yours will continue for who knows how long. Please take care of yourself, and remember that you are human, and we all have our breaking points, so do whatever you need to do to make your life and your husbands life a little easier. God bless you.
I'm sorry for your situation. Please think long and hard about quitting your job. That's your social and mental outlet. If you don't have that, your mental and physical health will take a deep dive. Besides you said your husband was too big a guy for you to help. So, your staying home won't do much good for him, but will do you a lot of harm.
It sounds like you need more help. Are you doing this all on your own? God bless you and your family.
I would look into help. Call Council on Aging in your area. Or try hospice. This is too big of a job for you and your daughter.
I’m so sorry that you are struggling with this situation.
Sending hugs and prayers your way.
Retiring to care for him full time could improve or exacerbate the situation. You'll be faced with a lot more caregiving, which will be both emotionally and physically challenging, even if you get help. The diversion of being out of the home and into a different environment will be gone, and won't be available as a stress relief, or as the opportunity to interact with others.
Have you been involved in any PD support groups, either directly through a PD association, or through hospitals which sponsor support groups? I was thinking that discussing others' options might offer some insight.
If you did retire, could you afford help (that's not to be nosey, but just in terms of alternatives)? Since he's unable to support himself, and I assume move around, that would be a tremendous increase in physical support for you, and could compromise your own health.
Something I would recommend exploring is the Dance for PD organization and program. Started by professional ballet dancers, they've adapted their experience to create doable, standing or sitting movements for people with PD. Movement is often based on ballet principles, but there's nothing like the strenuous, demanding physicality required of dancers.
To the contrary, moves have been taken down to basics, and adapted for people with movement disorders.
https://danceforparkinsons.org/
Check out this section for class information: many are streamed now b/c of COVID. It also contains information on streaming, or purchasing a DVD.
https://danceforparkinsons.org/resources/dance-at-home
Information on classes, streaming and other info on how to become involved in a class from home:
https://connect.xfinity.com/appsuite/#!!&app=io.ox/mail&folder=default0/INBOX
Schedule: https://danceforparkinsons.org/resources/dance-at-home#excerpts
Your husband may find that he's still able to maintain and use his muscles through participation in a safe, professionally created program that not only exercises muscles, it provides camaraderie and a sense of self accomplishment.