For those who care for someone with Parkinson's disease
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By TiredTexan On 2011.08.26 15:53
Haven't posted in some time. It has been a bit over 6 months since my PD husband had a swallowing test showing he was aspirating everything. The PEG tube was immediately suggested - and rejected. I found that he could drink the fortified drinks (Mighty Shakes) as well as eat some very soft food (like malt-o-meal, mashed banana, instant mashed potato, pureed veggies, etc.) and he has had a very limited diet since.
He has a lot of phlegm and drools fairly heavily (we have tried many things), and clears his throat often.
He has dementia that - in hind sight - has been a factor all the time and progresses pretty rapidly now. Over 8 years ago, a two week loss of voice, then 2 or more years and 3 or 4 doctors later, the parkinsons diagnosis finally was given. After all this time I have doubts about "textbook parkinsons" and am inclned to suspect one of the related conditions (perhaps Lewy Body Dementia). He has never had tremors, at 83 walks as well as any man his age. None of our docs will confirm nor deny that possibility.
Anyway, I have questions that someone here may or may not be able to "shed some light" on!
First, why is the drooling and phlegm so bad during the day, but there is seldom any evidence of it through the night?
One poser is how he can chew and swallow a "gummy" vitamin without "blinking an eye"...when the slightest food lump is a problem.
In these six months we have been referred to several specialists to "check out some slight possibility" - and always the PEG tube quesiion is raised and I have to 'defend' the decision. The docs try to make the entire thing seem as "easy as pie", but when we conferred with the surgeon, who realized we had researched info, he explained the infection possibility, that the phlegm would not be helped, and the aspiration percentage would be about the same. I suspect that few doctors actually do all that is involved from day to day with a PEG tube - it is left to nurses or other health care people.
I mentioned that my husband is 83 years old - I am a pretty "frisky" 81 year old, have had osteo arthritis half of those 81, and cannot take prescription NSAIDS...have to rely on OTC meds like acetomnophen and glucosamine/chondroitin. I admit that there are days when I feel that I simply cannot go on in this manner - what determines when a caretaker must "give up" - and not feel guilty about doing so?
We currently live in an independent living facility - and the staff here is so very helpful. We could go back to our as-yet-unsold house - but the responsibility would only increase for me. We have people around all the time here - going back would isolate us to some degree.
I try to keep a positive attitude - we have had a great 61 years together. But people are always saying, "Take care of YOURSELF" - that is easier said than done!

By plcpainter On 2011.08.27 12:54
Dear Tired Texan,
Yesterday I was talking with the head of Physical Therapy at the skilled nursing facility where my husband has been for the past week. She told me I needed to take care of myself and I pointedly asked her what that meant! I'm getting irritated with that phrase -- "Take care of yourself"! So, I've gotten feisty and starting asking people to explain what I should specifically DO???!
Part of her answer was to allow myself permission to seek help, either by hiring caregivers to come into our home on a regular basis or by having my husband in a care facility. She said my role was to be a WIFE and to love my husband as a wife. When the caregiving duties circumvented my ability to be a wife THEN I needed to make a change. This has profoundly affected how I'm looking at our ordeal! It has really helped me clarify where my responsibilities lie and where I need to put my energies!
Yesterday, when I went in to see my husband, I went focused on "Being His Wife"; not his care giver, not his medical advocate (though I remain active in those roles!). It was amazing how he reacted to me in such a happier, friendlier, loving way! :)
This seems so basic but it is a major paradigm shift in my thinking. My vows were to be his wife in better or worse and I am doing that. I am not a natural care giver and I bless those who are. I have many other people skills though and I will continue to use those with my husband and let those who are care givers do what they do best!
Holding good thoughts for you and your husband.

By TiredTexan On 2011.09.05 23:27
Thanks, picpainter. Your slant on the caretaker/wife dilemma is interesting and definitely something to think about. Accomplishing a solution is not so easy - but it does make sense. I'm just so tired of wearing all these hats!
I guess no one else has this problem! Ha!

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