For those who care for someone with Parkinson's disease
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By mrsmop On 2010.05.03 18:11
I've written before but now have new issues.My husband was diagnosed with PD about 10 yrs ago. He just turned age 66. He had DBS in Nov '08, and was doing fairly well. In the last year he had a total knee replacement, fell asleep behind the wheel and totaled his car (he had only superficial injuries), had severe pneumonia last Christmas, requiring hospitalization, completely lost his voice for many weeks, and to top things off he fell a little over a month ago and fractured his neck. He has no neurological deficits (other than the Parkinson's), but had to have a cervical neck fusion. Then he developed pneumonia in the hospital. He had swallow studies and it was determined he needed tube feedings until he can strengthen his swallowing muscles. He went from the hospital to a sub-acute facility for rehab, where he tested positive for C-difficile. So he is still on antibiotics and contact isolation. All he talks about is coming home. He is unrealistic about how sick he is and how much care he requires. Can only walk short distances with a walker and assistance.I am meeting with an eldercare attorney tomorrow to discuss estate planning. Is it at all realistic to think he may be able to come home, or should we assume that long term care will be needed. Can Parkies with this type of trauma ever return to their former level. I know his neck fracture will heal eventually, but he has had so many other complications. Any thoughts about how much return in functioning is possible. He was actually quite independent before his neck fracture.
Thanks for any input....mrsmop

By Emma On 2010.05.03 18:57
mrsmop, boy oh boy, you have a lot to think about. I have no experience with the situation you are in but I think you are going to have to play it by ear. You need to do some serious thinking about how much caregiving you can reasonably do and see how he is doing when he gets past some of these issues that are going on now. Hopefully there is someone else on this board who can give you a better answer, but in the meantime know that I am thinking about you. Seeing an elderlaw attorney is a good idea too regardless of how this current situation works out. We all need to be prepared for whatever the future brings, better to do the leg work now.

By susger8 On 2010.05.06 08:16
I think you need to plan for the worst case. It may be that he is able to return home at some point, but it's a progressive disease, and chances are he might worsen again to the point of needing a care facility.

My dad is in the late stages and uses a wheelchair most of the time now. He can stand for transfers but needs someone with a grip on his belt to pull him up and balance. His swallowing is OK, but he's generally not doing well. But -- he's home, with a full-time health aide. I think that unless something carries him off suddenly, he very likely will end up in a facility, but we've been able to stall that off for a good long time so far.


By caregivermary On 2010.05.06 14:51
this is a tough decision-I think I would get him as much rehab as he can tolerate and see what kind of improvement happens. I believe I mentioned before my husb had two cervical surgeries and with extensive rehab did come back. Not 100% but strong enough to continue to enjoy life. If at the end of the rehab, he is unable to move and requires your assistance 100% time, you may have a decision.

Take care

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