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 Everyone needs backup caregivers! 
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Joined: Sun Feb 28, 2010 9:48 pm
Posts: 12
Post Everyone needs backup caregivers!
I just wanted to share my recent experiences so others can be prepared, because I had heard that the caregiver of a dementia patient frequently passes before the dementia patient.
My 83 year old mother was diagnosed with LBD about 6 months ago, although I started noticing symptoms 18 months ago, and now looking back, they were probably there a couple years before that. My 84 year old, very healthy, father lived with her. They lived alone in a single family house. My mother's physical health started to deteriorate in February after several falls from poor blood pressure regulation. She spent some time in the hospital, was put on midodrine, which did stop the falling. But she could barely walk, didn't talk much, really took a drastic decline. So I hired 3 ladies to come in, one came 5 mornings a week for 2 hours to help her dress, another came 5 evenings to help her undress and get into bed, and the third's job was just to come a couple of afternoons and keep her entertained and awake. She wanted to sleep all the time. (which we have now resolved with Nuvigil, see the treatment posts).
Two weeks ago my father had a major stroke. He's currently in a rehab hospital, I'm not sure if he will be able to ever come home or not. But I thank my lucky stars that I had these 3 ladies already in place. They all were willing to increase their hours and between them, myself and a good friend we have been able to keep Mom in her house with 24 hour care. My mother's physical health is actually much better today, not sure if it is the coconut oil (see another post on that, too) or just that LBD has it's ups and downs (that's what the neurologist thinks).
Anyway, I'm posting this to suggest that anyone in a similar situation with one older spouse caring for another set up some back up caregivers, even if just for a few hours a week. You may be very glad you did. We already knew these ladies and knew we could trust them and I don't know what I would have done without them.

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Cindy


Sun Jun 13, 2010 9:47 am
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Joined: Thu Jul 03, 2008 11:05 am
Posts: 150
Location: Raleigh, NC
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That's good advice, Cindy. You were wise to recognize the need for help early on, and what a relief to you that it was in place when you needed it.

But what a tragedy for you, too, to be dealing with serious illnesses in both your parents at the same time. My heart goes out to you. Be strong.

Garnet


Sun Jun 13, 2010 10:41 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Garnet captured my thoughts perfectly. You were lucky that your parents allowed caregivers in at all. So many in our local support group have parents who will never allow strangers into the house.


Sun Jun 13, 2010 1:03 pm
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Joined: Sun Feb 28, 2010 9:48 pm
Posts: 12
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I know, my parents are suspicious of everyone, too. But these ladies started coming while my father was in the house, so he could keep an eye on them. After he became comfortable with them he realized he could use the time to run a few errands, and he started to leave them alone. And of course, he and I removed any temptations from my mother's room (jewelry). And I hired them privately, ran an ad in my local, town, newspaper. Two out of the 3 of them happen to have children in my daughter's class at our local high school, although I didn't know them before this. It's just worked out really well for me. And if my father is able to return to the house, these ladies all know him before the stroke, and will see him as the man he used to be, not just an old guy who had a stroke.

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Cindy


Sun Jun 13, 2010 2:06 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3423
Location: Vermont
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Cindy - I think this is great advice, too. And when 1 elderly parent is still living, even though they appear pretty healthy and active, it's not a bad idea to at least have some idea about hiring helpers if they become disabled. I have several friends whose parents are in their 90s and they resist the idea of investigating potential caregivers for their parent because the parent is so healthy. I'm a planner, and I hate being a crisis manager, so I'd rather have this sort of thing somewhat planned out "just in case". I'm so glad I hired part time caregivers for my dad a few weeks before his "big decline" - I think it might have somewhat helped his transition to the hospital, rehab center and ALF. He resisted at first, and within a day or two he absolutely adored his caregivers at home - he had company, they fixed his meals, did his laundry, did light cleaning and he was very upset that he couldn't have them anymore once he was hospitalized. He had grown quite attached in 3 weeks! Lynn


Sun Jun 13, 2010 5:25 pm
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Joined: Sun Feb 28, 2010 9:48 pm
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yes, that was another benefit to hiring the home caregivers. At the time, I was trying to convince my father to move my mother to a memory care unit at an ALF. He resisted, and so the part-time personal assistants were a compromise. But I soon realized, had I put Mom in the ALF, Dad would have been alone and lonely. Now he had 3 different women coming to the house and it gave him someone to talk to, since my mother is not good for much conversation anymore.

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Cindy


Sun Jun 13, 2010 7:58 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3423
Location: Vermont
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Cindy - good luck with everything. You have a lot to take care of and deal with. It would be nice if your dad improves enough that he could get back home with the caregivers. Hang in there. Lynn


Sun Jun 13, 2010 9:32 pm
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