Sunday, January 10, 2010


Long term caregiving for Multiple Sclerosis is too often like playing Whac-A-Mole.

Up pops change!

That change by default affects me as caregiver and medical advocate, when MS level of disability is as high as Patti’s (EDSS score > 8). Frustration is an understatement and depressing is not a manly-man word, so my head is somewhere in between.

Long story short – Patti needs to move from her room in one wing of her care facility to another.

Typing the above paragraph it does seems like a non-issue. However when you have to make decisions for someone else who cannot direct their own care, believe me, nothing is ever a non-issue.

As much as you want to believe you have care under control you never really do whether at home or away.

Up pops change!

Changes in the bigger picture of the business of long term care have eventually rippled down to the simplest.

Back in 2007 the National Commission for Quality Long Term Care observed “a shift among nursing homes towards the delivery of short-term, rehabilitative post-acute care, mostly financed by Medicare.”

While I have been aware of their business transition converting one wing to short-term, rehabilitative care I have been somewhat sticking my head in the sand. On the other hand Patti’s care facility has been busy waiting for and reviewing the optimum best of possible change in room scenarios for Patti.

I should be comfortable that a ‘team’ is not only caring but working to find the best transition.

Patti herself ranged from oblivious to indifferent when we talked about it. Significant topics usually require a couple days of attempted conversations to break through the MS cognitive and memory symptoms.

Grasping for distraction, I found an old picture from 1983 of Patti and I playing whac-a-mole before Multiple Sclerosis.

Yet this is now and it’s back to whac-a-problem.

“If I had a hammer
I'd hammer in the morning
I'd hammer in the evening
All over this land”

Caregivingly Yours, Patrick Leer
web site:


  1. In honor of caregivers like you, I have posted the following poem on my blog today:

    Caregivers are great.
    We are lucky to have them.
    A devoted love.

    They must have had wings
    before they landed on earth.
    It sure seems that way.

    Selfless and giving,
    they smooth the bumpy pathways.
    They soothe our hurts.

    Thank you for what you do.

  2. I am sorry they are moving her, every little change takes a big adjustment. Hope it goes smoothly. We are seeing so many changes here in getting our patients admitted to nursing homes. So many restrictions now apply and the patients have to be able to pay out of pocket for the first 90 days, unbelievable. That is several thousand dollars up front. So since they can't afford it many are being sent home which shouldn't be and many are having extended stays in the hospital while we try to find them someplace to live. It is really sad.

  3. Good luck with the move. We have just had another frustration stick it's head up and I just loved the metaphor. I will do my best to strike it firmly with my mallet.
    Take good care

  4. Nothing is harder than making all life's decisions for another life. I admire you.


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