Housing for the Severely Ill

Discussion in 'Fibromyalgia Main Forum' started by jasminetee, May 7, 2009.

  1. jasminetee

    jasminetee Member

    Hi All,

    I was wondering what severely ill people do about housing. If you're a young adult who's bedridden and cannot make your own meals but must have cooked food at nearly every meal, can't do your own laundry, need someone to transport you to doctor's appt.s, etc... and you're on your own completely with no family help, what are your choices?

    Do most people in this situation stay at home and have help come in? What if they're too ill to get the door? Do they give helpers a key?

    Or is there housing of some kind for young adults who are totally disabled? If there is what is it called? Nursing homes?

    [This Message was Edited on 05/07/2009]
  2. Pippi1313

    Pippi1313 New Member

    There aren't many options for younger peeps in that situation. Not that I'm aware of anyway.

    With my illness, I've been in that situation a few times.
    My parents had the medical equipment co move a hospital bed & everything else I needed, into their house. If I didn't have them, or if they weren't able to take care of everything for me, the hospital would only release me to a nursing home.

    If you're completely unable to care for yourself, even temporarily, social services will get involved.
    If you're in that situation, & about to be released from the hospital, they can't legally let you go home. (They don't actually care or anything - they don't want the liability).

    It's best to come up with a plan, before "the authorities" take control away from you.

    It's a VERY serious thing to have social services declare you incompetent to care for yourself!!!!!

    Thanks to Mom & Pop, social services stayed out of my business & I'm back in my own place. :)
  3. ladybugmandy

    ladybugmandy Member

    i met a patient who stayed in a nursing home for a long time. it was hell, he said. he had been sick for 17 years i think, and was only 34. his family had money but was not supportive.
  4. Pippi1313

    Pippi1313 New Member

    My family doesn't have any money, but they said "no way in H***" would I get put in a nursing home, as long as they have anything to say about it!

    We may drive each other nuts, but gosh I love my big crazy family!
  5. jasminetee

    jasminetee Member

    Pippi, that's so great that you're family is there for you. :) I'm so glad that's worked out for you.

    Tea, that poor guy. You know, I wonder how many young adults are in this situation. I was wondering what kind of housing you're in, if I may ask.

  6. TeaBisqit

    TeaBisqit Member

    My mother and stepfather were supportive and my mother was taking care of me until she passed away. He passed before her. So when I was left alone, and I knew I couldn't care for myself, I ended up going into Low Income Housing. I'm in an apartment complex that houses the disabled and elderly.

    When you are in a place like this, you can get help. There are small buses that will take you shopping and to doc appointments if you need them.

    You can get a helper in through welfare and the area on aging (this program is for all ages).

    There is help out there. The local Housing Authority is where you go to get into a place like this.

    They try to help you as much as possible. They will even help place people in nursing homes who can no longer care for themselves.

    Low Income Housing should always be the first choice. A nursing home should only be considered when all other options fail.

    The waiting lists can be long to get in. It took them seven months to find me an apartment. And after I got in, they said it would take people even longer.

    Daily, right now, I don't have a helper yet and I'm struggling hard to do anything. I still have my car, but I only go shopping twice a month. And that kills me. Doing the laundry kills me. I'm seriously struggling bad. But I'm still trying right now to do it myself. But it really helps knowing that I can get the help when I have no other choice.
  7. GKTLA

    GKTLA New Member

    I'm not sure if you're asking these questions for yourself, but if so and you're in the Northern CA area I would be more than happy to help you out. I am blessed with a wonderful husband and have been bedridden off/on for about 5 years. Without his help, I would be in the situation you describe. Please let me know if we can give you a hand.
  8. jasminetee

    jasminetee Member

    Thank you for clarifying the housing situation for me. I have total respect for how you've handled all that you've been handed. I feel like now I understand more about what type of housing is available as well. Big hugs to you Hon, and prayers to you.

    That is very sweet of you. Thank you for your offer of help. :) Luckily, I'm not in this situation but I am unable to care for myself and I could very easily be facing this kind of decision in the future. I want to know my options now because I once thought I'd get better but now that I keep getting worse I have a lot of fears and learning more about what my options are helps.

    I feel more mentally prepared for whatever lies ahead and you all are very supportive which makes me feel better about all this too.

    Thank you,
  9. waltz

    waltz New Member

    This is not housing but one option available is "meals on wheels." If you Google that, you will find services that help with delivering meals or groceries.

    In San Francisco, there is a nonprofit called Project Open Hand which mostly serves people with AIDS but some others as well.
  10. teller7

    teller7 New Member

    I've been in a number of emergency rooms. Could hardly function, stand on my own, answer questions. Looked like a rag doll. The drs stand there and look puzzled, take blood, take a cat scan to check for stroke, etc. Tests all come back in the normal range. They can see that I'm very ill. When my husband explains that I have ME/CFS they don't even know what he's talking about and then comes the words perhaps assisted living or a nursing home would be appropriate. It just infuriates me but I can't respond. Why don't they believe in this debiliatating disease. I have a person come in to clean my house. And I have another person come in to stay with me while my husband is at work and she fixes our meals. I feel very fortunate about that because the alternative would be nursing home. The whole situation for all of us is so sad to say the least.
  11. TeaBisqit

    TeaBisqit Member

    Just remember, the wait lists are long for the housing. Call your local housing authority and ask a few questions. You will feel better knowing the facts.
  12. Pippi1313

    Pippi1313 New Member

    Don't wait to look into the housing authority option. People on disability qualify already. You don't hafta wait until you're too ill to be on your own.
    Tea is right. Get on the waiting list!
  13. jasminetee

    jasminetee Member

    But is it true that you first have to lose all of the money you have in order to qualify?

    And another thing, do you think people are better off homeless or in a nursing home if those are their two choices?

    [This Message was Edited on 05/08/2009]
  14. Pippi1313

    Pippi1313 New Member

    Income & asset limits vary. You're not required to be penniless, but you'll have to ask your local housing authority.

    ummm... was that last question rhetorical?

  15. TeaBisqit

    TeaBisqit Member

    Surprisingly, the income limit is high for low income housing. In my state, it was somewhere between Twenty-two thousand a year and Thirty thousand a year for one person.

    You don't have to lose any money to qualify. I still had a ton of life insurance money and got in here. They didn't count it as income.

    Nursing homes are a bad place to be in many ways. The danger of diseases like MERSA are high. They don't feed the people enough. Less than prison food. And they have strict rules about coming and going hours.

    Homeless shelters are not a safe place to be.

    Either way, anything you have will be stolen from you.

    The honest truth, it's probably better to be dead than to be in either place. But if you really have no choice, at least you'd have a bed in a nursing home and you could probably sleep rather safely at night there.
  16. monkeykat

    monkeykat Member

    Hey TeeJKay,

    Wondering what level you were at before your health declined so much? What level are you at now? Do you have a copy of Bell's Disability Scale?
    If not, I'll send you one. I range between level 10 - level 30 so it's quite a rollercoaster. where are you?

    I hope to be able to read this post one of these days but reading is exhausting and overwhelming. it's very sad what we deal with.

    Love ya, Monkeykat
  17. jasminetee

    jasminetee Member

    I appreciate you sharing your knowledge about this. I'm glad to know you get to keep some of your money to still qualify.

    Monkeykat, I also fluctuate between 10 and 30, before this I was at 100 a lot of the time, back in the '80s and '90s. Lately I've been more in the 10's and 20's on the scale than 30. I'm sorry to hear you're functioning so low on the scale too.

    Hugs All,

    [This Message was Edited on 05/12/2009]
  18. monkeykat

    monkeykat Member


    We're in a similar place. Hey, I didn't realize that you were ever at level 100 -- how did you ever get there??? and do you have any ideas on what crashed your health???

  19. jasminetee

    jasminetee Member

    I was bedridden the first 8 months after I came down with CFS. It took about 4 months for me to get Dx with it. Once I found out there was no cure I didn't know what to do but my doctor said changing my diet would help. I did and I believe it helped but I doubt that it was responsible for my CFS going into mostly a remission. It just did, which is actually quite common from what I've read. One other thing is I was so ill I had to drop out of college and I rested all the time those first 8 months then I gradually started being able to exercise more and more and that's when it went into remission and I was able to finish college and teach for 11 years.

    It's also common for it to relapse about a decade later which it did for me, though I hadn't read about that until after it happened. I was at 100 for 13 years.

    I believe that I relapsed because I sprained my back and went into perimenopause and could no longer exercise. In my case, I feel that exercise was helping me stay well then. Now it makes me much more ill.

  20. cfsgeorge

    cfsgeorge New Member

    this is a horrible disease. It's like being a parapalegic with a serious head concussion. It takes healthy adults in the "prime of their life" and makes them horribly sick and disabled. It's a huge "shock" because it gives us no "warning" unlike many other chronic disease even life-threatening ones.

    For those who have family to take care of us, we are the lucky ones. Otherwise, the nursing home is always available for those who do not have enough ADL's to take care of themselves. During this "down" time, we must each rest and find our own treatments that can give us back some normal functioning. So whether you are in home care or nursing home, you gotta strive to get better somehow.