“We were supposed to be going out for lunch today … But when I arrived he was still in bed and sound asleep … he woke up but still groggy, and said he didn’t want to go anywhere…”
Wednesday, October 03, 2012
Multiple Sclerosis is exhausting
Unquestionably MS caregiving is both physically and emotionally demanding and exhausting … but “living with MS” itself now that is the ‘mother of all’ exhausting, like having a tank looming over you just waiting to run you over.
multiple sclerosis caregiving care giving care facility
A fellow MS caregiver blogger whose spouse has also progressed to the care facility era of Multiple Sclerosis recently shared a touching entry, Too Tired for Lunch.
Reading Barb’s entry I was reminded of how many times I arrive to find Patti in one variation or another of “I just want to sleep”.
When this happens in late afternoon (our usual outing time) I just hang out while she sleeps, use the opportunity to track down physical therapists etc, or catch a little tube with Patti, and help out by feeding her dinner in bed, etc.
None of which I confess tends to make it into many entries to this journal. I am guilty of wanting to share our successful adventures more than when MS wins. In reality a whole lot of both 'living with MS' and MS caregiving is about being “too tired”.
Even when out and about, every outing has its breaking point when that tank of MS fatigue rolls right over Patti.
Monday I had Patti home for another caring and the culinary arts experiment using haddock tenders and shoestring french fries for finger food friendly fish and chips. While the culinary experiment went quite well I was also in these cooler Fall temps trying to stretch the outing as a kind of training exercise for upcoming October Halloween parades.
Trying to guesstimate when that MS fatigue breaking point will happen and getting Patti ready for bed just before it hits is the never ending ‘art of MS caregiving’.
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/
My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/
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