Friday, October 21, 2011

caregiving IS actually part of life

Leaves fall like reminder notes. Next month will be my 22nd anniversary as a MS spouse caregiver.

Extraordinary care needs find us in this care facility era chapter of our story; however a nursing home is never a solution just another season.

Family, in my experience, should not only continue to be ‘hands on’ involved in assisting with the activities of daily living but the driving force of the continuing spontaneity and intangibles of life.

Staying ‘hands on’ brings consistency to care. For example by transferring, preparing, and tucking Patti into her bed by myself the majority of nights each week not only is that consistent for Patti but enables me to consistently be involved with staff. Mutual training and motivation never hurts. 
"It's just like sending your kids to school and never talking to the teacher,” says Pat Kelly director of the West Virginia Health Care Association. "The team aspect is key."
Simultaneously, life is about more than just assistance with activities of daily living. Life is never routine, it’s the unexpected even challenging that gives color to any day.

Facilities, in my experience, do a good job trying however they have to program for a common denominator. Family customizes.

Since I tuck Patti in the majority of nights I try to make each visit an outing. The ‘what’ is not as important as the spontaneity.

Progression of Patti’s MS symptoms demand concessions in planning and time involved, ever adaptive is essential.

Halloween parades are a century old Pennsylvania Fall tradition. However Patti can no longer see costumed marchers in the middle of a street and prefers to go to bed long before most parades end – so we experimented by visiting parades beforehand, while they were assembling.
All in all it ended up a fun and free way to enjoy several Fall evenings. … and maybe just maybe by our presence, demonstrate that caregiving is actually part of life. 
"Creating a home filled with spontaneity is foundational to transforming nursing home culture." Susan Misiorski, Living in a Nursing Home: What Matters Most (IV)
Caregivingly Yours, Patrick Leer 
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  1. Bless you and Patti, Patrick. Such an amazing love story that presents so many situations and experiences we all can appreciate and learn from. Thanks for all you do. Dan

  2. I understand the spontaneity factor being so important. Many people in Patti's position never have that.

  3. Patrick, you totally raise the bar on family participation in the team aspect of caregiving in a nursing home.

  4. I really like how you tuck her in bed - and my gosh, what else I can say except I hope if I am ever in that situation I am half as lucky as Patti.

  5. My husband was a nursing home director for over 27 years and he always talks about the difference families can make in the residents quality of life and care. You are definitely customizing Patti's care. What creative thinking and planning!


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