Friday, September 21, 2007

MS Caregiving: Nursing home, what's in a name? Cost?

To answer Bea’s questions in comments to my last entry:


A building can be named anything. ‘Inside’ it is all about level of care. A skilled nursing facility (SNF) cares for people who have BOTH significant challenges with activities of daily living (ADL) AND require 24/7 nursing care for a disability or illness (e.g. Multiple Sclerosis). Other care facilities may be licensed for custodial ADL care only.


According to the AAHSA:

·        The average annual cost for a nursing home is $70,095.


SHOCKING number? Less then 10% of adult Americans can estimate the cost of a nursing home.


DO NOT believe for a minute that long term caregiving at home is an inexpensive alternative. Annual home health care cost for a part time ‘custodial care’ aide is approximately $25,000 (25 hrs/wk) and projected to more than double as demand increases with aging population.


Or you can do it like I did, try to do it all yourself … except, studies show “home care giving costs an (individual) an average of $656,000 in lost wages, pensions, and Social Security, not to mention negative health impacts.”


And … in spite of the sacrifices to maintain home care the person in need will not get the same access to medical care as in SNF care.


This old war horse has fought MS progression through both. For 15 years I was Patti’s home caregiver, and have now been her caregiver in the 24/7 care facility era for 3 years.


Like 50% of people, we started out paying for SNF care out of pocket until our family financial assets were exhausted and then applied for MEDICAID. In ‘our’ story, the preceding decade and a half of home caregiving did not leave much to exhaust. Patti is getting the best medical care possible for her Multiple Sclerosis symptoms while we the family … well, let’s just say …


… through the years you lobotomize yourself of the customary dreams or future plans associated with money. Caregiving is an altered universe.


Caregivingly Yours, Patrick Leer

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  1. THat's a bleak picture you describe here. I imagine most people are not ready for this shocking life transition. We should all be praying for sudden death! For those who have ($$) and can do (live a healthy, active life work full-time), the options do not look so bright. We have some, and we can do some, but when I think about what you are saying here, I realize that it doesn't matter how much we have saved/invested over the years... because it will all be eaten up within a couple of years if one of us needs home health care or to live in a skilled nursing facility. And here we thought we were doing good because our son is out of college now. Surely, taxes won't get us... health care will! Ugh!!! Of course, I would want to take care of my invalid husband (if he were to be)... I say that now. Will I feel the same way when I can no longer afford to maintain our home?  So if a person is concerned about such things, should they not worry until there is a major health problem that interferes with daily activities? I mean, it's not like saving money for your kid to go to college one day. This Baby Booming population is about to hit a major life crisis! Who is going to take care of US? We've grown up thinking that we can save and invest to prepare for our own retirement, but one thing I get from you, Patrick, is that is a drop in the bucket next to the losses we'll face when we must take care of a disabled spouse with significant life challenges. So perhaps the best thing is not to worry, since I can't prepare for it, but to continue living as though nothing like that will happen, and if it does, deal with the facts and the issues at that time. Is that it? And you have remained hopeful, encouraging, and cheerful for your family through all these years. I am in awe of you, Patrick. Your love is the Greatest Love of All. bea

  2. Yep, that about covers it... well, I don't know about the facility.... I do know about the last two paragraphs. It can be a suck-*ss kind of world. Thank goodness for self-inflicted lobotomies.

    Have a good one!

  3. ...........after seeing what caregiving is doing to our home and the energy it requires............I took out lifetime care insurance with several options.  My daughter said it was the best thing I could have given her.  Makes us both feel secure.   I could not get the insurance for Jack because of his physical problems, and Mothers is just for home care.but that is better than nothing.....just getting it started is another thing!

  4.   I walked in the shoes of  spousal home care provider for 16 years, caregiver while hubby was in an excellent SNF for 5 months.  His adventures in MS land ended in 2003.  We weren't able to afford the assistance of a home health aide, there were programs out there to assist us(that we were never informed of) and I could have been paid by the state all those years I took care of him at home, had we only known.
       Patrick, if the things you write about reach only a few, you have done so much more than anyone ever did for me.  For that, I just want to say Thank You.  Yes, that is all in my past now, and I am one of those Home Health Aides that provide the custodial care, doing what I can for spouses like I was.  You are a source of light in the dark tunnel of Multiple Sclerosis.
                                   Blessings,  Leigh

  5. ((((((((((((((HUGSTOYU))))))))))))))))))Have a nice weekend.

  6. Your words "caregiving is an altered universe" were so true they could be some type of caregiver's theme quote.  The devastation to finances and dreams - so true too.  Prayers for you and your wife, bless you.  Kristi Gott,


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