For those who care for someone with Parkinson's disease
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By Freespirit On 2013.01.28 09:15
Hi, all. My love is begining to have difficulties with memory after having PD for 11 years. I work full-time and really need to start planning for his care when he is no longer able to stay home alone. I realize that a nursing home is eventually likely, but I would like to keep him home (safely) for as long as I possibly can.

I'm not sure who to begin with. Should I contact a home-health agency first? Should I go on the recommendation of his PD specialist?

He also has advanced prostate cancer. We are waiting right now to see if it has metastisized. I'm not certain if the hormone treatment he is taking for this is interacting with his PD meds and causing the memory problems, or if it is just the PD.

I don't want to have to make decisions at the last minute. Can anyone suggest who I might talk to to even begin to plan out his care? At least, where to start.

Thank you.

By carman96 On 2013.01.28 09:56
I know it is so hard to plan when your pwp can't really help with the big decisions anymore. I think the dementia was something I wasn't prepared for. My husband cognitive functioning has been going downhill faster and faster. I will have to make some changes in the future but right now it is day to day.
Try your county Agency on Aging. They might be able to point you in the right direction. Is he a veteran? He might be eligible for a V.A. home.
Good luck and let us know what happens since you could be helping us with the same problems.

By jcoff012 On 2013.01.28 11:14
This may be off the wall, but here goes...Is it possible to find a local Parkinson's Caregiver Group, or even a local chapter of a Parkinson's Group? The reason I suggest them is that we just got a memo about upcoming speakers, meetings for February...and in it, they state they are having a meeting with four different resources, including the Council on Aging...and others who will help in planning for the future. Perhaps you have something, too? After I got the email, I visited their website, and tada...they have links to many resources that are available in our area...I say our area, but Carl and I have to travel just to go to meetings...they are 40 minutes from us...Just a thought...good luck!

By blue2 On 2013.01.28 19:33
My husband, diagnosed 12 years ago, has had increasing cognitive issues for the past 2 - 3 years. He also has hallucinations pretty much daily. He cannot be alone and I'm the primary 24/7 caregiver. However, I owe my sanity, tenuous though it is, to having a caregiver come in two days a week for 5 -7 hours. I know I am fortunate to be able to afford the help.
In southern California such care for someone who uses a wheelchair, can stand only with assistance and needs help with eating and personal care costs $17 - $22/hr.
We are fortunate also that my son, who lives with us, is available every Sunday morning and whenever I ask when he's not at work. None of my husband's five children can find time or are not comfortable with his disabilities.
I recommend as others have that you contact your area council on aging or Parkinsons Foundation organization. I found our caregiver through the recommendation of a friend. Your local hospital and/or convalescent centers will have lists of for-profit caregiver services. (Don't expect them to make a recommedation, however).
People often expect that finding a caregiver means simply asking a friend or family member. But in my experience it's hard to find someone willing / able to be with someone who has dementia and hallucinations.

By parkinit On 2013.01.30 02:49
I've found the best caregivers, and possibly the cheapest, by advertising at local schools. I've had a few students who were studying to be LPNs (and are now). I pay them directly, as employees, but it is worth it. They are great.

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