Fwd: Caregivers

[Carrie Barrott <Argonette@xxxxxxx>]

Carrie, daughter of Michael 68/45/44?
92352, parents
90703, Carrie

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Jane & Joan, If I had to give one piece of advise about dealing with PD as a 
caregiver is they need as much help as the person with PD.They call us angels 
but we can't be because we are in a living hell. The begining years of PD of a 
spouse are tolerable but as years progress the demands become much greater and 
we just seem to keep carrying the load. So if setting up a program for PD 
patients please include help in areas for the caretaker.
 David was home with PD until last Sept.The doctors actually made the decision 
that I couldn't take him home because of the toll it was taking on me.He was 
having periods of dementia and these past ten years have been physically taking 
there toll on me and my son and his family who had come to live with me to help 
care for his father.We have 3 daughters and one son.2 daughters would not help 
only give advise.    One daughter did what she could but our son and his wife 
and 3 children are truly angels to me.Jason would listen for and get what his 
father needed at night while I worked as a nurse and then I would come home 
care for him and try to get some sleep as I worked full-time.It left no time 
for a life for me.
When he went in the nursing home I had to leave work as I mentally and 
physically collapsed.My counselor and DR told me I must work days after 30+ 
years of nights to live a more normal life.I felt so guilty for not keeping him 
home. Much as I loved him I had to realize it was the best thing for both of 
us.The N.H. has learned about David's acting out ,dementia and moved him to 
where he gets more attention as he's very manipulative.Probably partly my 
fault. 
I started working days in Jan in the Emer Room close by and love it. I am 
appreciated,love the patients esp the old ones . I did just get out of the 
hospital after a week of colitis because of stress from David. Social services 
has told me not to visit so often and shorter periods of time as he manipulates 
me and makes me worse.They impressed on me it's time to live my life and get 
over feeling guilty.
 I know I seem to be rambling but I want people on the list to understand how I 
feel for all of the caretakers . Please take time for a life or you will be 
worse off than the PD spouse.David is actually doing quite well now in the NH. 
He goes to activities,church,visits,and loves his huge space of a room. The 
staff is outstanding and many have been there for years.I am very lucky for 
that. We have no hidden assets so David was approved for medicaid recently. 
That was a big burden lifted . I know he will be cared for even if I die first.
This new year I realized how much of a life I didn't have,no friends,no outside 
activities,etc. I spent all my time caring for David and none on me. So I am 
joining a brand new singing group, and doing things with an old friend recently 
divorced. I'm actually a little scared as I feel less stressed. I must have 
lived on stress for years.
Well, I guess I have said enough except if it hadn't been for this group, ideas 
I've read ,similar problems ,etc. I would have felt so alone . But knowing 
someone really cares has helped me make it through.Please keep the ideas coming 
and care givers take care of yourself too.
Pauline CG David 64/30+years of PD/now in NH,in NH,USA

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