Sunday, was the beginning of Patti’s 5th year in an extended care facility.
An unremarkable, in fact, unnoticed benchmark for Patti, not so for me. Spent part of the day in my head beating myself up because Multiple Sclerosis progression had won. Even though I had juggled 14 years of home care for Patti and single parenting our daughter, the macho voice on my shoulder reminded me I had still lost.
Arriving to pick Patti up for an outing I jumped in helping the aides change Patti’s Depends and clothing with a stand-up lift. I was snapped out of my funk by the comradie, banter, and laughter between them all.
Knocking the macho voice off my shoulder, YES this was far better than 5 years ago in the twilight of homecare.
Providing the ol’ traditional basic needs of food/water, shelter, and clothing is not enough. Safety and healthcare ARE basic needs for someone living with Multiple Sclerosis.
In the twilight of homecare, Patti was falling multiple times a day and increasingly placing herself and others in at risk situations.
Patti can STILL develop other health issues and even more so because of an out of whack immune system from MS. Medical attention can be complicated by trying to juggle transportation and appointments around a home caregiver’s schedule.
Safety and healthcare have become NON-ISSUES in the care facility era, now at her need 24/7.
“Home” was my battle flag for homecare.
However, MS dementia like symptoms of cognitive progression plus total bowel and bladder incontinence changed the definition of home. When visiting meant possibly changing an adult diaper well you suddenly have no friends. Home became increasingly isolated.
It took awhile to get used to teamwork. However now, in the extended care facility era, three shifts a day of fresh, professional and kind people provide 24/7 attended care and companionship. Patti has never expressed a second thought. Additionally, Patti’s parents visit with her 3-4 afternoons a week. 4.5 evenings a week I pick her up for outings and/or dinners at home then tuck her into bed myself at her care facility.
Yes, as the macho voice on my shoulder reminds me, I still lost the home caregiving battle. However with the echoes of laughter from a Depend change in my head I know this is the better course for all of us.
Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
Sharing the trial and error learned lessons of a MS spouse caregiver / carer about family, home care, and transition to the care facility era from 23 years of living with Multiple Sclerosis as a family ... a ‘warts and all’ picture of living with MS.
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You still won Patrick. Your compassion and love helped you let go so Patti could be in the best environment for her. It takes a bigger man to let go of his ego and see the comfort of someone else as a priority. (Hugs)Indigo
ReplyDeleteThere are a lot of things the two of you have lost along the way, but none of them are your fault, or hers.
ReplyDeleteI felt like the BIGGEST FAILURE in the world as a daughter when my Dad wanted to live in a facility, but begrudgingly, over time, I've come to realize in many ways it was for the best, for HIS BEST. I still hate it, always hated it, but that was/is an emotional problem not a factual problem.
Your wife is loved, she matters, she is appreciated and well-treated and valued while many other people are pushed aside.
You won, she won. ~Mary
I like what both Indigo and Mary said; very wise women they both are
ReplyDeleteI think it was the safest thing to do to keep everyone safe although I imagine it was a very hard decision
betty