Can anyone help me understand my role caring for a spouse with Parkinson's Disease?
I have been caring for my husband for 5 years. I am doing things I would have never thought I would be doing. I keep telling him I can't be his caregiver as well as his wife or lover.
What you are attempting to do is difficult for anyone. Some people blend the roles more easily than others, but it's hard for nearly anyone. I'd suggest that you talk with a counselor to help you define your roles and let go of any guilt you may feel (caregivers live with guilt - at least any I've known - most of it unearned). I'm glad you can talk honestly with your husband. It sounds as if you need to start getting some in-home help to do some of the caregiving so you can concentrate on being his wife/lover. Please contact the National Parkinson's Foundation (www.parkinsons.org) for some help, and look for support groups for spouses of Parkinson's. I'd also recommend the Well Spouse Association (www.wellspouse.org) for online support. Take care of yourself, too. Carol
Although it has been quite taxing and with no little degree of stress, I've found it possible to be partner and care giver for Carolyn for the past eight (8) years. Surprise! Guess I am the first male to share a response. It is necessary, I think, to accept that one will only be able to make those personal sacrifices that one deems acceptable in caregiving. Others will simply have to be bargained out. You are NOT alone. KNOW that there is a wealth of support available in the community.
My husband is 61 and diagnosed over 11 years ago. He's doing very well but we have noticed the dyskinesia is recently much worse. Every Parkinson's patient is different and we are very open with each other and family as well as our GP and the neurologist. We haven't needed much help but I do go to a support group and we are taking more time for ourselves. I would not hesitate to look for help if we needed it. I also take care to get my rest, enjoy my work and take care of my health as well as my husband's. I see so many accounts of those who have far worse situations than ours and I hope they can get the help they need!
I also take care of a husband with Parkinson's Disease. One of the things that has helped me is the local caregivers support group that meets once a month. There are two men from our church that come to stay with him while I attend the meeting. We share experiences, solutions, fustrations and triumps with one another. It helps keep me sane and understand his struggle better.
I also take care of a husband with Parkinson's Disease. One of the things that has helped me is the local caregivers support group that meets once a month. There are two men from our church that come to stay with him while I attend the meeting. We share experiences, solutions, fustrations and triumps with one another. It helps keep me sane and understand his struggle better.
Can I be honest? My husband has PD he is 73 I am 55. Yep! He has had PD for about 10 yrs. We also have a 13 yr old on the Autism Spectrum. I ask myself this question every day. What is my role in life????
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I'm glad you can talk honestly with your husband. It sounds as if you need to start getting some in-home help to do some of the caregiving so you can concentrate on being his wife/lover. Please contact the National Parkinson's Foundation (www.parkinsons.org) for some help, and look for support groups for spouses of Parkinson's. I'd also recommend the Well Spouse Association (www.wellspouse.org) for online support.
Take care of yourself, too.
Carol
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