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 Practical Caregiving 
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Practical Caregiving
This article was posted on the LBD Caring Spouses group, I thought it would interest others who are also caregiving, it speaks to all of us.
"The research states clearly that we are not able to divide our attention as well as we think we can." Scientific American Mind magazine March/April 2012

Caregiving, especially hands-on caregiving, requires that we multitask continually. There was never a moment, whether I was with Dwane or not, when part of my thoughts and mental energies were going toward: was he safe? were things all right? I was hyper-alert for danger, and I got way too good at smoothing the way for him. That is why - in my opinion - he is now, into the second month living at an assisted living facility, experiencing frustration and discontent. Professionally I have very good skills at creating an environment that prevents problems, and I implemented that in my caregiving. It certainly was not wrong to do so, but - now that this preventative approach is no longer smoothing the way for him, he is having difficulty reconciling himself to his limitations. The multitasking and hypervigilance was killing me . . . .literally. And, while it made Dwane's way smoother for several years, now he has the opportunity to come to grips with life when someone is not doing that for him. It seems it would be good if there were a handbook to tell us how to proceed once the decision is made that assisted living is necessary. But, alas, there is not. Each of us needs to traverse this path on our own. There is reassurance, however, from our own observations and those of the personnel at the assisted living facility. I took Dwane out to hear a speaker last night. With a bit more respite from the 24/7 caregiving, I could see he has more trouble walking now (shuffles more noticeably) and looked more disheveled, without me to be there to help him with grooming. Both he and I need to know that it is what it is. We are dealing with a terminal and progressive disease process. It is necessary that he make his way in this, and that I make mine. I can no longer smooth the path before him. That does not mean that I no longer advocate for him; I do. But, I cannot be there to prevent problems for him.

_________________
Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Mon May 21, 2012 12:27 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Practical Caregiving
That's a very hard lesson to learn. For thirty-eight years [even two years before we married], I've been devoted to making his life as stress-free and convenient as possible, attending to all the minor annoyances, keeping a schedule to his liking, all while also working full time. I didn't mind doing this out of love for him. When Lewy came along, all the parameters changed and it became impossible to know what was irritating him or what he wanted next. Trying desperately to please him, spare him anxiety and prevent decline, I wore myself out. How I wish someone had told me that I could 'no longer smooth the path before him'. Thank you for your important post!!! It will help other caregivers immeasurably!

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon May 21, 2012 12:37 pm
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: Practical Caregiving
Pat....I agree, it is and will be a tough lesson to learn. This is the place I am right now. Norris still can walk (although shuffling) and is not incontinent (but has forgotten where the bathrooms are and how the toilet works--so he needs verbal instructions), sleeps about 15 hours a day, and wants to pack his things to "go home" (where we are). I am beginning to visit care facilities because I know this is where it is headed. A tough decision....Carol

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Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Mon May 21, 2012 1:17 pm
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