Can anyone help me understand my role caring for a spouse with Parkinson's Disease?

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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.

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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
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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.
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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!
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Parkinson's and dementia seem to go hand and hand for some. Not all. It's a disease that needs to be fought every single day. Once the fight goes out of the patient, the disease takes over. How is it fought? Through exercise. Once they begin sleeping all day and hardly moving, plan for it to get worse.

Then the dementia kicked in and my role as a wife ceased. I became the caregiver. I couldn't believe how fast my husband became so needy and childlike. Things we take for granted he couldn't think out anymore. He can't even problem solve how to turn a light switch off.

My disbelief in what I was seeing went on for years. I kept getting up and showing him how to do things like it was going to get better. The disbelief is over now. Today, I'm happy if he uses the bathroom correctly. Cleaning up some of those messes can certainly bring a non-believer into the reality of the situation.

If I could only start over again, and hear the word Parkinson's for the first time, I would kick his bottom right into a gym. Get off the couch and get moving! It's not a death sentence, it's round one. The fight is on! There's Parkinson's dance, boxing, tai chi for balance, exercise...you have to find them and more importantly, do them.

Then maybe you can stay a spouse and not become the caregiver.
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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.
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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.
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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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where is their a support group for me so I can effectively care for my non-complying husband with parkinsons we have been to 4 doctors please help
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we live in Scituate, MA.
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Well, trying checking this out: southshoreelderservices/?page_id=888
or this: sselder/. Good thing you are looking for help!!

BTW it looks like you live in a very beautiful town...
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