Wednesday, August 31, 2011

to be fed or not to be fed, that is the question …

Adapting to MS progression is unquestionably part of being a Multiple Sclerosis caregiver. Accepting it is another story.
It’s been a long strange trip from fine dinning to eating with dignity.
While I can understand recent changes in Patti’s care plan from ‘assisted dinning’ to being fed, somehow a written plan has an emotional impact even though I know it is best and done to insure consistency in care.

Care facilities in addition to conventional dinning have ‘assisted dinning’ which involves not only increased staffing ratios but can include the skills of nursing, occupational therapy, speech therapy, and others during meals. - Within this group are also those like Patti who are dependent on others to eat and drink. Nursing assistants or aides are assigned on a one-on-one ratio to facilitate feeding in a safe, dignified manner.

I’m sure it is written somewhere that independence should be encouraged. Yet I know and have known that it is damn difficult to watch Patti increasingly struggle to feed her self with loss of arm strength and control.

Choking is also always a clear and present danger masked in invisible and intermittent symptoms related to the functions of swallowing.

At home I’ve long engaged in ‘assisting’ Patti with eating. Adaptable preparation soon evolved into verbally cueing her to pick up the spoon/chew/swallow, and using finger food whenever possible – everything except simply feed her.

While I cannot remember when we last went to a restaurant, we do enjoy eating out at festivals and street fairs. However I confess to feeding Patti in public behind a masquerade of “here, try this” or “taste this”.

Other factors like MS fatigue, memory loss, heat intolerance, visual impairment, etc can also affect any given meal.

Monitoring the transition from assisted dinning to being fed I asked the only person who mattered, Patti, about it immediately after ‘officially’ being fed dinner. “I can’t remember” she laughs, “Now can I get a ciggie”.

Ay! There’s the rub – perspective.

 … and sometimes tangential questions of etiquette such as which side of a plate does a spork go on?

Caregivingly Yours, Patrick Leer 
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  1. I really admire you.

    When I read your blog, I feel worried. I worry that my husband (with MS) will get to a point where he needs my help and I am already so drained from taking care of my son (blind and autistic). Then I feel bad for thinking selfish thoughts, because I KNOW that my husband would take good care of me if the situation were reverse.

    Thanks for being a great example to me.

  2. An for me there was always: What really matters? And then: And why does that even really matter? I got better at not making(or letting) some things matter with my dad...but it was a long trip. You do a really wonderful job, Patrick. ~Mary

  3. DeeAnn, thank you and you hit the nail on the head when it comes down to it, isn't it always about if the situation were reversed?

  4. The other day Alex asked me if he could cut my meat. I was very startled... I said no, I got it covered, thanks.

    The next day I gave him a "free get out of jail card" and he handed it back to me without any hestitation.

    It still scares me though. I am very aware of how difficult caregiving is...

  5. Mary, yep it's kind of like that proverbial journey up the mountain to ask the wise hermit for the answer to 'the question' only to learn "why does that question even matter" :)

  6. Have Myelin? - now 'free get out of jail cards' for when those who care step on the toes of those they care about is the best idea I've heard in years!

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