Friday, April 27, 2012

MS Caregiving - reframe your idea of normal

The most important message is that you may have to reframe your idea of normal,” 
Kimberly Koch, Vice President, Programs & Services, National MS Society

For the first time in over 22 years I was frankly speechless as I read the final paragraph of Multiple Sclerosis Caregivers 2012.
“…In summation, with the combination of the duration of care, the prevalence of mental confusion, and the high probability of long-term care placement, support to the family caregiver of someone with MS seems to rise to a critical level….Proactively reaching out to them with support will help, not only the caregivers, but the care recipients, and ultimately the country, as well.”
Someone somewhere finally gets it!

This is such a leap contrasted to decades of being told by MS organizations that less than a quarter of people diagnosed with MS will ever need a wheelchair that at the risk of hyperbole it may be comparable to the world is flat vs round.
More from National Alliance for Caregiving (NAIC) “Policy Implications of the Study”

"This study sheds new light on several new aspects of family caregiving for someone with MS. In particular:
• The long life cycle of the disease suggests that the total number of years one serves as a caregiver will be much, much longer than caregivers in general …
• Caregiving for someone with MS has a substantial negative impact on the family’s financial situation in 43% of the cases.
• The likelihood of the care recipient going into a long-term care facility within the next ten years was estimated at 40%—with the triggering event being the need for 24-hour care. 

Taken together, these issues create a rather compelling case for caregiver support at Federal, state, and local levels. The ten-year estimate of nursing home placement should be high enough to concern the Centers for Medicare and Medicaid Services (CMS)."

Caregivingly Yours, Patrick Leer 


  1. Now that they get it, what will they do with it? I hope they (whoever they is, I'm still trying to figure that out myself) figure out ways to help make caregiving for someone with MS more doable and durable and realistic long term and provide resources in abundance for such a thing to happen and not wait another 22 years in doing so.


    1. Thank you Betty! I edited the 'they' it was confusing when I re-read. National Alliance of Caregivers (NAIC) is a coalition of caregiving organizations and from my experience the leading provider of caregiving research. To my knowledge this is the first time MS Caregivers have been considered, researched, and reviewed within the overall context of caregiving previously we have been viewed as shadows of those we care for in MS relaated research.

  2. Patrick - thanks for the summary of findings report out. I saw your link to the report but hadn't checked it out yet. This helps me cut to the chase. Interesting graph. Not surprising, given that folks requiring significant caregiving will be on the more disabled end of the MS continuum.

    As Betty said .... "what will they do with it?" I think that hits the nail on the head.

    1. Cranky, I smiled at your comment as 'their' 62 page report certainly violated my long held maximum of no entry should take more than a minute to read. :)... and they even credit 'Caregivingly Yours' in the report. First thing they need to do with it is "cut to the chase"!

      There are pages of graphs like that and to me there have been so many days and nights over the years that after attending an MS function or reading an MS blog I wondered if Patti even had MS because she had so many symptoms while others had nearly none. Seeing that graph I realized how many others have lived my life.

  3. As always, a great post Patrick! Jennifer and I have really been talking more and more about each of our roles as caregivers for a person with MS. Truly hope the powers that be continue to get it. And it's great to hear you are continuing to recover, and know that you and Patti continue to be in our thoughts and prayers. Dan

  4. I agree with you that these facts are more than enough for better caregiver support at Federal, state, and even local levels. Although there are some funding available through community organizations to provide some respite care, they are only limited in some areas.

  5. People really need caregiver support. It sad to know that there are many who are not taken well. If you like your patient to be in good hands, the is the one.


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