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Thread: How will I know when it is time to put Mother in a "Facility"?

  1. #11
    Senior Member TomRL's Avatar
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    Both of my parents ended up in nursing homes before they died. It was an agonizingly tough decisions, but when we got to that point, there was no other choice. The both needed 24/7 care and the resources to provide it were not available except for big bucks. Paying for 24/7 home care comes to $175,000 at today's prices, around double a nursing home.

    It's a tough decision and you'll probably feel lousy about it, but it will do neither of you and good if you start running yourself into the ground. Good luck and God Bless...
    Tom

    "Blessed are the pessimists, for they hath made backups." Exasperated 20:12

  2. #12
    What if you live in an area where there are no agencies that will accept them?
    We have several agencies here, but if for instance would not accept my husband.
    I find aides on my own which is tricky and sometimes unreliable.
    A friend of mine cared for her father at home several months and even with medicaid and an agency she had to take a leave of absence from her job and put herself in financial peril. She needed her job to keep health care for her daughter.
    None of her siblings wanted to help.
    Having to make a choice about nursing homes is agonizing for people.
    I am doing everything possible to keep my husband out of one, but what if I die?
    My adult children can't give up their lives, his family are scattered and in denial.
    My 45 year old cousin has MD and it has progessed to the point where she can not even live in a group home. Her sister brought her home and on top of raising 3 boys and working managed for a few months, but their home is a split and my cousin broke her foot.
    She is getting rehab and staying in a very nice NH and has decided on her own she might stay there.
    Her sister is so torn by all of this and thankfully no one has been judgemental to her.

  3. #13
    Senior Member zillazangel's Avatar
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    Quote Originally Posted by hlh View Post
    Sorry if you are surprised that some of us are sensitive to your posts, but you clearly haven't been on the other side.
    AMEN! I find it TOTALLY unrealistic to say that ALL people with advanced dementia can stay out of nursing homes with community based resources. FAIL! There AREN'T such resources. Period. If there were, I would be using them to help take care of my high quad husband.

    Nursing homes can be deplorable, they can be mediocre, they can be good. But they are necessary in some cases. Get off your high horse and don't lecture those of us in the trenches.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  4. #14
    Senior Member zillazangel's Avatar
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    Quote Originally Posted by Cripple Concepts View Post
    .....the right combination of attendants, nurses, family, friends, roommates, and volunteers I do believe even folks with dementia or very complex medical needs can be served at home. ...
    You'll pardon me while I spit my soda at my screen.... Volunteers. Yah right. Friends. Nurses, paid by who? Roommates? Give me a break! Sorry to be so rude, but you clearly have not dealt with this before. (and if you have, please enlighten us)
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  5. #15
    I have been fortunate to have never spent time in a nursing home, however I have friends who haven't been as lucky. Several folks mentioned home health services are not free, do you think nursing homes are? I understand 24/7 care is difficult to arrange, and some areas of the country are worse than others. The original post said "At what point will I know if she should be living in a "Facility" vs living with me?", my point was there is no point when someone "should" be institutionalized and that there other potential options available.

    Instead of complaining that the services aren't available to serve a loved one at home so they "have" to be incarcerated, sorry institutionalized, I think more of us should be fighting to get funding to make home health services available to all people who need them in all 50 states. I rely on Medicaid funded, consumer directed home health service for my daily survival. I am fortunate to only require a few hours of care a day, but know others who need 24/7 care and get it covered by being creative with who can provide care. It isn't easy, but it is getting better, things like Community First Choice (part of the affordable care act) will help make it possible to live in and receive care in the community. Freedom doesn't come free, I spend 2-4 days every week in Medicaid meetings trying to make things better in Colorado.

  6. #16
    Quote Originally Posted by Cripple Concepts View Post
    I have been fortunate to have never spent time in a nursing home, however I have friends who haven't been as lucky. Several folks mentioned home health services are not free, do you think nursing homes are? I understand 24/7 care is difficult to arrange, and some areas of the country are worse than others. The original post said "At what point will I know if she should be living in a "Facility" vs living with me?", my point was there is no point when someone "should" be institutionalized and that there other potential options available.

    Instead of complaining that the services aren't available to serve a loved one at home so they "have" to be incarcerated, sorry institutionalized, I think more of us should be fighting to get funding to make home health services available to all people who need them in all 50 states. I rely on Medicaid funded, consumer directed home health service for my daily survival. I am fortunate to only require a few hours of care a day, but know others who need 24/7 care and get it covered by being creative with who can provide care. It isn't easy, but it is getting better, things like Community First Choice (part of the affordable care act) will help make it possible to live in and receive care in the community. Freedom doesn't come free, I spend 2-4 days every week in Medicaid meetings trying to make things better in Colorado.


    Oh, I see. Are your friends also 81 years old with dementia? Or perhaps 81 year old with SCI and dementia? If not, then I think you are coming at this from a different personal experience, and are not addressing the OP's real question.

    It's great you are doing what you do in Colorado, and as I said before, I am all for avoiding institutional care if at all possible. Aging in place should always be the goal.

    But it is clear that you did not read our posts carefully, so lets just say we will agree to disagree.

    Life is rarely black or white...in fact, everything is a shade of grey. And I learned long ago that no one can really relate to your situation until they walk in your shoes.

  7. #17
    When I worked as a hospice nurse, I was asked this question a lot. The short answer is when your mother's care needs exceed what you (family & home care resources) can adequately provide at home. I take issue with the earlier comment that the care at a nursing home will not be as good as what she is getting at home. While that may be the case, I've seen too many examples of caregivers that were so guilted about considering nursing home, that they kept mom at home longer than they should have. The patient was not getting adequate care. The staff at nursing homes are among the lowest paid yet hardest working in the healthcare field. Many are good compassionate caregivers. The care would be better if they could staff better and receive annual adjustments to room and board fees. In MN there has been no increase in pay for NH staff for several years.

  8. #18
    Senior Member zillazangel's Avatar
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    Yes there is a point when someone should be institutionalized. My grandmother is completely incontinent, can't swallow, is completely non responsive. There are no volunteers in the world that would take that on. You are coming at this from the perspective of a young sci. The op is talking about an older person with a progressive dementia. Two very different things. I think you are projecting your own fear of being in a nh (which you should not be) with the legitimate need of some to be in one. Please consider this.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  9. #19
    In most states Nursing Facilities get rate increases annually whether the economy is good or bad, as they get the percentages in legislation. Meanwhile funding is stripped from home and community based programs because the rules are not nearly as strong. The Community First Choice program I referred to previously is a great program, but is an option for states not a requirement. The Olmstead decision was clear, people have the right to live in the community, and if they or their authorized rep choose they can live in an institution. The original post talked about the woman's mother still being fairly independent, my point was she should start getting outside assistance as soon as possible to avoid caregiver burnout.

    Home and community based care is the future, CMS has been quite clear on that. My knowledge is primarily on people with spinal cord injuries, the people this message board is supposed to serve, but it can be applied to any individual who requires assistance to live. I understand dementia creates a whole different set of needs that must be addressed, but when people come to this site debating about putting anyone in an institution they should be aware there are alternative options.

    Alternatives to Nursing Homes
    http://www.medicare.gov/NHCompare/St...Tab=3&subTab=3

    Money Follows the Person (transitioning out of nursing facilities)
    http://www.medicaid.gov/Medicaid-CHI...he-Person.html

    Research studies on costs of home and community based care vs. nursing facilities, results are somewhat inconclusive however it demonstrates this issue has been around awhile!
    1986
    http://aspe.hhs.gov/daltcp/reports/1986/rptcong.pdf
    2007
    http://www.ahcancal.org/research_dat..._Synthesis.pdf

    Good article about bringing a severely disabled and medically needy child home
    http://www.cnn.com/2012/06/16/health...html?hpt=hp_c1

  10. #20
    CC, please read this entire thread over slowly.
    Those of us in the trenches have some worthy experiences.
    Volunteers? I wish.
    I'll agree to disagree.

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