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Thread: Chronic Progressive Illness, Not Always as It Appears

  1. #41
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    I think that no matter what state policy is, nursing homes rule. Too many people make their living this way. It's just that in individual states, there may be rules in place – as there are in New York, for instance Consumer Directed Care – which people on Medicaid can utilize to avoid living in nursing homes. But too many times, restrictions in the acquisition of medical equipment contain the message: "if you need this equipment, you belong in a nursing home." For instance, Medicare/Medicaid will not supply a fully automatic bed. Nor will they supply a power assist Hoyer lift, or ceiling lifts. Once I had a physical therapist who questioned Medicare about a Sure Hands ceiling lift for me. She was told, by Medicare, that any piece of equipment (other than a wheelchair) with a motor was considered a "luxury." (!)

    When the federal government will spend twice to three times the amount of money that it takes to keep people in their homes on putting them in nursing homes, then obviously the economics of the situation have no meaning. Virtually no person in a nursing home is there without the assistance of Medicaid. The families of people have to go through a spending down process in order to qualify their relatives for Medicaid. My experience of a nursing home taught me that nursing homes truly are the dumping grounds for people that our society would prefer not to acknowledge, and that they truly are institutions, every bit as much are hospitals and prisons. It's not that nursing homes are all bad, at least the one I was in wasn't all that bad. It was like anything else – there were good parts, and bad parts. I learned a lot there, and I met a lot of good people. All the same, I'd rather be home.

    Chris
    Last edited by Chris119; 11-20-2011 at 02:10 PM.

  2. #42
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    I agree Chris and some families have no other choice than the nursing home. That needs to change. As you point out medical equipment needed to keep a person at home is often not paid for and unless the funds are available from the family then the only alternative is the nursing home.

    Here in Georgia as I'm sure in other states there is a large nursing home lobby and even some of the legistature members are owners of nursing homes.

    Gabriella:angel:
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

  3. #43
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    If, like me, you are Medicare/Medicaid dependent – in other words, a ward of the state – you have no option of independent living, only the nursing home. However, there are situations under which a nursing home really is the only option available to families. For instance, if a person has advanced Alzheimer's, is stroked-out, or has a catastrophic brain injury. Nursing homes do fill an important need. However, it does seem as if the state uses the option of a nursing home far too often. And sadly, there are families who dump their relatives the moment care becomes difficult. I wouldn't have believed that if I hadn't seen it myself.

    Really? Seriously? There are legislators in your state who also own nursing homes? Is it just me, or does that seem like a conflict of interest? Yeah, no, I forgot we were talking about politicians. That pretty much explains that.

    Chris

  4. #44
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    I think the nursing home industry should be carefully investigated. It must be a vast industry, and I've noticed tiny one-paragraph articles in the local newspaper about various nursing homes being cited for violations. I've been noticing these for years, and the nursing homes I've seen have been unsavory places with very indifferent staff members.

    At least one I visited many times was set up so that I could just wander in and go right to my friend's room down the hall, right past the desk. No one ever stopped me or asked where I was from or why I was there. I could have been anybody. I could have been an ax murderer. They never paid the slightest attention to the visitors their residents had. This is a "safe" environment for the elderly and infirm?

    If, like me, you are Medicare/Medicaid dependent – in other words, a ward of the state – you have no option of independent living, only the nursing home.
    Chris, I'm like you but I like to think I still have an independent living option--home health aides, a personal emergency response system. If I wake up some day and find myself in a nursing home, I don't know what I'll do but it won't be pleasant.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

  5. #45
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    At the time, the only reason I survived the nursing home without serious long-term clinical depression was that I knew I would be leaving. I was the only person who came into that nursing home with MS and subsequently went home. The nursing home didn't think I would be leaving. When I told my brother that, he said: "I know you not leaving could be a possible outcome. But that is unacceptable to me." When I heard him say that, I knew that he would work tirelessly to make sure I got home. I never doubted it again.

    By "independent living" I was referring to the sort of independent living housing that is available to the elderly who have private insurance. Like you, I have the options available to me that make it possible for me to stay in my home – home health aides, a nurse who comes to my home every three weeks to change my catheter, and Section 8 to subsidize my rent. I know what it is to give up the last vestige of independence by going into a nursing home. I'm extremely grateful to have the options that I do have for staying in my home. I was also very fortunate in having the sort of people around me who could advise me of the options available to me for retaining that independence. Half the battle lies in knowing the options and understanding what they involve.

    Chris

  6. #46
    Distinguished Community Member agate's Avatar
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    Bravo for your brother! I'm sure it's all too easy to get bogged down in the vast maze of bureaucracy involved in nursing home placement questions, what with Medicare/Medicaid, insurance, and dealing with the various doctors and other health care providers.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

  7. #47
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    Yeah, my brother totally rocks. He's one of my personal heroes. He's the one who bought me this laptop, and the Dragon NaturallySpeaking software. So, he's the one who made it possible for me to come here and annoy you all!

    Chris

  8. #48
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    This has been an interesting and informative post. Annoy away Chris and hoorah for that wonderful brother of yours. Wish every one on this board had someone like that. You are right, he is a hero.

    Virginia
    Virginia

  9. #49
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    At the moment, I am covered under Medicare and my husband receives retirement benefits and takes care of the financial expenses. I receive a very small disability retirement income so if something happens to him I would also qualify to be a Medicaid/Medicare beneciary. We are really preparing as the money becomes available to "live in place" as long as it is feasible. I am trying to save as much as possible just in case some of these theories CCSVI, stem cell, or any other treatment not covered by insurance becomes a proven treatment. I am taking a wait and see approach and saving if I decide to try one of these as I read that most cost at least $10,000.

    Chris, your brother is a "hero" in my eyes. I had lots of experience when my Mother was in the final stages of multi-stroke dementia or alzheimer's (it's really hard to tell the difference). I tried to care for her at my home for 3 years even though I was just disabled from working but after she progressed to the final stages, the last 2 years she spent in a nursing home as she needed 24/7 care with all the health problems she developed.

    This is the outcome of Craig's post as we all think of what is down the road and how to prepare for it. I hope he is alright as I haven't seen a post from him in a while. His book does cover planning for the future.

    Gabriella:angel:
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

  10. #50
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    Part of the problem with planning for the future of MS is that the disease is so unpredictable and individual. Even doctors find it impossible to predict the course and extent of this illness as it will affect an individual. Also, expense is an ongoing problem. Modifications to living space are in general a one-time expense. Personal care aides are expensive, and they are a daily expense. Medicaid programs – consumer directed care or long-term care – pay $10-$12 an hour. Out-of-pocket payment for these aides runs approximately $16 an hour. My aides are here seven hours a day. Do the math; it's a big expense and it's 24/7, 365 days a year. The encouraging aspect of all this is that the numbers haven't changed all that much, as in there isn't that big a percentage of people with MS who will become profoundly disabled. However, just knowing that there are people like me out there does not mean that everyone with MS needs to let their imaginations run amok. What knowing this could mean is should it happen to someone, they may understand that they are not alone. It also could suggest some options for people who find themselves dealing with similar situations.

    My attitude always was "plan for the worst, and hope for the best." As time has gone by I have come to understand that while the idea might've been comforting at the time, it's impossible to plan for the worst when you have no idea what the worst for you actually will be. Looking back, I wish I had done more modifications to my living space sooner than I actually did. However, there were some things that happened to me that were not even a blip on my radar. In some ways, I'm rather grateful for that. And while I may have imagined some of the things that did happen to me, I learned that the reality almost never resembled imagination. I can see that I just would've wasted valuable emotional energy worrying about something that may or may not have occurred. Or I did waste emotional energy torturing myself over things I had never experienced and so could not possibly understand.

    I'm very grateful to Craig for beginning this post. This was a subject that I felt I could actually contribute to. I, too, have noticed that he has not contributed to this post after I first started posting within it, and I hope he is okay – possibly just busy with Thanksgiving day plans. I also hope he doesn't feel I hijacked this thread.

    Chris

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