For those who care for someone with Parkinson's disease
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By Grammy7 On 2013.07.10 23:19
My husband was diagnosed with Parkinson's with Dementia in Oct 2009. He was having fainting spells so we were referred to a neuerologist. sp??? He also has severe autonomic hypotension. In Feb 2012 he had eye surgery for a detached retina. His progression was fast after that. Out patient surgery turned into 6 days in hospital, 30 days in rehab, and 14 weeks of home health care. Then in July 2012 he passed out when his blood pressure was 66/42. Ended up in hospital for 5 days, rehab 21 days and then in assisted living. He cannot walk or stand. He now has to be fed all meals. He tries to talk and can't. The last 4 months I have not been able to make out what he is trying to say. I have been reading all the posts in this forum for the past 4 years. I feel so guilty that I can't care for him at home. Yet I know he is where he belongs. He was falling at home. From the time he went into the home he has never asked to come home. I don't think he knows what or where home is. He seems very content where he is. I am the one suffering the loss of having him with me.
His dr has told me he has been in the advanced stage of Parkinson's for well over a year. He weighs 125 lbs, was usually 160. He was diagnosed at the age of 69. I wish so much that he could still be at home but I just can't take care of him. I haven't seen many posts from spouses who have the loved ones in a home. How do you go on????

By carman96 On 2013.07.11 00:06
So sorry you are going through that. My husband is not at that stage yet but I dread the day he will be. Of course you are grieving for the man he once was. Of course you feel guilty but it is not your fault. It is this damnable disease and I am sure you have done the best you could. I hope you can get some help from others who have been through this.

By jcoff012 On 2013.07.11 09:32
I, too, am sorry for your situation. But, as some solace, I worked in an assisted living as the activity director and know that the people who work there are loving, caring and kind persons. Let your heart be easy that you have done the right thing by him. They will watch over him and care for him. You have done your best. They will do theirs. Good luck to you. Others will post. Welcome. Jane

By Grammy7 On 2013.07.11 09:44
Thank you for your responses. I really do like the caregivers at the assisted living facility. I chose this one in particular because my husband's long time family doctor is the medical director there. So he got to keep his primary care doctor. I have never been sorry for where he is. Just that I don't have him at home. The last couple of weeks he has declined. He no longer tries to scoot around in his wheelchair. And he is jerking a lot. He doesn't have a noticeable tremor though. Just when he is being moved from wheelchair to lift chair, etc. He was such a strong person. He was a pharmacist by trade. He used to do all the cooking, loved to bake bread and was an accomplished woodworker. He made a lot of the furniture pieces in our home. It is just so sad to see him in this condition. I spend between 3 and 5 hours with him everyday. When I get home I am just drained. I love to quilt and scrapbook but the past year I have hardly done anything.

By Jane On 2013.07.11 11:26
Grammy 7, you have done so much more than I. I am sitting here feeling so guilty it is consumming my day, which is not good because I work full time. After four years of trying to take care of my PWP I have come to the conclusion that I cannot do it any more while working full time which I need to do for financial reasons. Everytime I assist my PWP I experience rage. One night I let out that rage while helping him and then decided he does not deserve this treatment from me and I don't know how to not feel the rage. We are in the process of getting him into a Veterans Home. During this time I feel like a complete failure and feel so sorry for him. If only he was involved with a woman who could be a better partner he would not have to go to a home. My PWP can still walk and on good days can dress and take care of his personal needs on his own. With his hallucinations and obsessions he thinks I am getting rid of him so that I can enjoy a swinging singles life. I wish that he could understand how horrible I feel and how sorry I am that I could not be a good caretaker.

By phoenix On 2013.07.11 22:34
Jane, please do not beat yourself up. Caring for a PWP is a full time job, especially into the later stages. You are so not a complete failure if you have kept this up for 4 years. Believe me, I understand about the obsessions and hallucinations and how hard that is to deal with. I have put my beloved but so difficult to live with husband on the waiting list for 3 long term care facilities. I can't imagine how I will deal with it when we get the call that there is a place for him at on of them....and I can't imagine being able to deal with this much longer. Email me if you want to talk to someone who understands.

By Grammy7 On 2013.07.11 23:51
Jane don't beat yourself up. We all experience rage in one way or another. My rage comes out in crying. I try so hard not to let my husband see me. We all get frustrated. I have not worked since my husband got diagnosed. I don't know how you do it. You can only do so much.

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