Nursing home?
I have been caring for my husband for several years. In addition to PD he has been recently diagnosed with Parkinson’s disease dementia. It’s getting too much for me. I wish for my husband to go into a nursing home. He does not want to. I feel guilty, especially as I can still manage - just. Even if I controlled my guilt not sure what I would do if he flatly refused to go into care.
We are both 76. Anyone been in this situation?
Hi
- My heart goes out to you because it is not easy to manage all the things on your plate right now. While I have not been in this situation personally, I hope others who have can jump in and share their experience. We are here for you and are always available to be a listening ear. This is a tough decision and we completely understand why you may be feeling guilty, but it takes a lot of strength to acknowledge that caring for your husband at home is becoming too much for you to manage alone. Sending warm thoughts - Lauren (ParkinsonsDisease.net Team) 
I am sorry to hear that you are going through this. While I am not at this stage yet, a member of my family is going through dementia, and it is becoming necessary for her to get more care than she is able to provide for herself (note, she lives alone). As a person with Parkinson's, it's especially hard to face each stage of my own losing control of what I can do on my own and having to ask for help. I would definitely see losing the familiarity and love of home being a greater challenge, and something to definitely consider, as well as reaffirming that it isn't an end to your relationship together. Perhaps there is an impartial pastor or health care provider that can mediate the discussion and show how safety is the paramount issue involved here. I wish you both well with this tough situation. Big hugs and much support.
Hi Dan, As a carer I see what PD does, but I would never say that I understand. You have to walk the walk to know what something is like - like a man can never know what childbirth is like (chuckle). You say `its especially hard to face losing control`. I bet that's an understatement. Tell you your story.
ps: don't forget to include some of the good stuff.even as someone who has Parkinson's, every time I think I understand, I find that I have so much more to learn and relearn. Additionally, as far as understanding goes, I think it's very tough to understand Parkinson's because it's so horrible and ever-changing / progressing. With that, we just have to make sense of things in the now in our own way, and if we do that, then at least we can get through to the next day. You're definitely in a tough spot that anyone who's ever looked at things from this side of the equation could never understand either. Thus, I'm sending you lots of positive energy to help you with these tough times. I know it's not a lot but I hope it guides you to a place for both of you to feel comfortable, loved, and safe. I know that's not much, but I hope it guide you to better days.
I have recently had to make similar decisions for my husband. It is extremely difficult, but you will know when you can no longer keep him or yourself safe at home. I learned the hard way that things you never imagine can occur when dealing with Parkinson’s with dementia. I have been my husband of 55 years caregiver for five years. I had planned to do that until one of us graduated to Heaven. Parkinson’s with Lewy bodies dementia changed that. Consider looking at facilities that treat memory care specifically. These are not nursing homes, and the staff are trained to aide patients of all ages suffering from a memory disease along with other health issues. My heart goes out to you. I know how difficult this is. My faith is what I rely on daily.
My husband age 67 is in his 2nd year since diagnosis, I also have fears of what to do when it gets to the dementia or Lewy Body stage, I am almost 73 and do not think physically, mentally and emotionally I will be able to cope with being a 24/7 caregiver, sometimes individuals get very difficult to cope with the mood swings, anger and lack of understanding what is going on in their head. I think about this alot, his memory is getting worse also he is hard of hearing and does not want to wear the hearing aids. does not take his medication as prescribed, which I feel is selfish on his part, I think he is in denial about the progression of the disease. So far he has tremors in one arm, and still thinks he should be able to ride horses, and his Harley, and work. If it gets worse I will have to ask for help from his only child a daugther who lives in a different state. I never planned on being a care giver.
`I never planned on being a care giver'. Me too. Your emotions are likely to be all over the place. One minute I feel such compassion to see another sole struggle so with no hope of getting better. In the dead of night when I haven't had much sleep I get cross and irritable.
As I said in another post I am going to do all I can for my husband, but I am not going to sacrifice myself in the doing. I aim to do the very best I can for us both.
