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Caring for someone with Parkinson's 
Started by Carforus
07 Dec 2013, 6:57 PM
Are there any care givers part time, or full time of a relative or spouse with Parkinson's, who have any stories to share with respect to psychological coping with this illness in both the sufferer, and the caregiver?

I have not noted any caregivers of relatives, or patients with Parkinson's on this forum. Is this because Parkinson's is easier to cope with than other terminal illnesses? I am of the view that it is not easy to cope with, though the life 
expectancy for some is much longer than other illnesses. In that respect it is less
immediate a stressor than it could be in other situations  
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Reply by marstin
08 Dec 2013, 3:05 AM
Hi Carforus,

My Dad sufferd from Parkinson's for many years and passed away 5 years ago from an unrelated illness. I don't think it is an easier illness to cope with, only that it generally is not a terminal illness. My Dad was never an easy person to deal with and the illness only made him more angry and depressed. He spent many hours laying on his bed and even at family get togethers he wouldn't come out until it was time to eat. Even then you could tell that he felt like he was on the outside looking in.

I'm not sure what kind of information you are looking for. Could you write more?

Tracie
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Reply by NatR
08 Dec 2013, 6:21 PM
Hi Carforus,

i was was a caregiver in nursing homes and did care for  residents with Parkinson's.  I think for the patient with Parkinson's - their body loses abilities first and it's very hard for them to accept care, and from my experience I saw exhausted spouses hand over their loved one unwillingly to long term care.

its very difficult - dealing with Parkinson's, MS and other conditions that increase the need for daily  support with care, dressing, feeding, etc.

i am sure each person has a different experience - in how long they can manage at home, in how the affected person handles the condition.  I can't answer the specific questions/concerns you had but I can empathize with you.

i hope that you will find encouragement here and a place to just chat,  air concerns and between all the participants we can be supportive to you.  I think feeling alone and not knowing what the future holds - is a difficult thing for sure.

thats why this forum is a great place to stop in and ask a question, share your thoughts, get some responses and know that you have an invisible but real circle of support.

We all care about each other.  I wish this forum had been in existence many years ago when I struggled with  loss, pain, frustrations, and felt alone.

that is what the Forum offers - people with real life stories helping others.  Bring your coffee or tea and type your thoughts;) if one can't figure out what to say, another will! 

Cheers and and hope today is a good one,
best wishes,
NatR
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Reply by moderator | modératrice
09 Dec 2013, 1:33 AM
Hi Carforus,

I was re-reading this remarkable thread started by Jimmie: Caregivers: Can we talk honestly? 

He has been caring for his wife, who has a terminal neurological illness for many years. On the thread he and others frankly talk about the challenges of long-term caregiving. If you write a message on that thread, the others taking part in the conversation will receive a notification that a new message has been posted.

I hope this helps.
Colleen

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Reply by Carforus
09 Dec 2013, 3:20 AM
Hi Colleen, 

I have just finished reading the thread started by Jimmie. I feel that I am being prepared much ahead of time. For this I am fortunate. Until coming to this site, I did not believe "virtual", could be quite this authentic. I have been surprised and that is good.  
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Reply by moderator | modératrice
14 Dec 2013, 4:37 AM
Hi Carforus,

Yes, the validity and authenticity of virtual connections often surprise us. I'm glad you've given it a try. How are things with you today?
Colleen 
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Reply by moderator | modératrice
19 Feb 2014, 2:15 AM
We haven't heard from you for quite some time Carforus. How are you?
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