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Thread: The bankruptcy of home healthcare

  1. #1

    The bankruptcy of home healthcare

    I'm trying to keep expenses down while the same time trying to preserve the longevity of my caregivers. Between turning me twice (and helping to cath once) between bedtime and morning, any caregiver who has to do this and then do a full day's work the next day only to repeat that the next night, any caregiver would suffer from exhaustion due to lack of sleep. Much less trying to do this seven days per week. Often times the nights require more frequent care.

    So I break it up into weekday daytime and then nighttime, and then the same for the weekends. However, this results in four employees and is a lot more money than if someone just had a live-in m-f. My weekend wages are comparable, whether splitting it up or someone living in for the weekend.

    Having several people also allows flexibility for vacation, sick, and other issue coverage.

    I've been a quad for 31 years and live alone and need full-time coverage, for doctors visits, cooking, shopping, cleaning, and a myriad of other tasks. It cannot be packaged into a two hour in the morning and two hour in the evening routine. I do not want to bankrupt myself (or do other legal means) in order to qualify for Medicaid coverage for home healthcare. That has its own issues.

    And around here, you are not going to get anybody in your house for less than $15-$25 per hour, and usually more once they know they have to do tasks such as bowel care. Just do the math and you can see how much it is going to cost.

    I just don't see any way out of this and wonder if others have been similarly challenged by such circumstances.

  2. #2
    Senior Member Tim C.'s Avatar
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    100% understand what you?re saying

    Quote Originally Posted by crags View Post
    I'm trying to keep expenses down while the same time trying to preserve the longevity of my caregivers. Between turning me twice (and helping to cath once) between bedtime and morning, any caregiver who has to do this and then do a full day's work the next day only to repeat that the next night, any caregiver would suffer from exhaustion 100% understand what you?re sayingdue to lack of sleep. Much less trying to do this seven days per week. Often times the nights require more frequent care.

    So I break it up into weekday daytime and then nighttime, and then the same for the weekends. However, this results in four employees and is a lot more money than if someone just had a live-in m-f. My weekend wages are comparable, whether splitting it up or someone living in for the weekend.

    Having several people also allows flexibility for vacation, sick, and other issue coverage.

    I've been a quad for 31 years and live alone and need full-time coverage, for doctors visits, cooking, shopping, cleaning, and a myriad of other tasks. It cannot be packaged into a two hour in the morning and two hour in the evening routine. I do not want to bankrupt myself (or do other legal means) in order to qualify for Medicaid coverage for home healthcare. That has its own issues.

    And around here, you are not going to get anybody in your house for less than $15-$25 per hour, and usually more once they know they have to do tasks such as bowel care. Just do the math and you can see how much it is going to cost.

    I just don't see any way out of this and wonder if others have been similarly challenged by such circumstances.
    When it comes to spinal injury your only choices are:
    1. Being lucky enough to be cared by a loved one, Who after just a short time of caregiving will see us becoming your loved one.
    2. Get hurt on the job where the benefits are as good as a police department?s so that they literally provide you with a nurse for rest of your life.
    3. Do not become a high enough quad that you can?t take care of yourself.
    4. Sue and get awarded A big settlement from the piece of pavement That broke your neck so that you can support yourself.
    5. Or, having enough disability compensation either from insurance or from savings in order to support yourself with a 24 hour live in caregiver , Because Medicare will not fucking cover long term home care.
    6. Lastly, your hope is to get sick and die soon after your rehab because you certainly don?t want to go into A nursing home .


    I would love to hear from any of the 20,000 Or so members of this website to disagree???
    Last edited by Tim C.; 05-19-2019 at 04:53 PM.

  3. #3
    Senior Member
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    Impossible to disagree, Tim.

  4. #4
    Have you considered going with an indwelling catheter instead of dependent intermittent cath? We don't usually promote intermittent cath for those who cannot do it themselves and who have limited family or attendant support. Needing an extra cath during an episode of AD when there is no one there to assist can be fatal.

    Also, have you considered a turning mattress or bed so that no one has to be there to turn you at night?

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  5. #5
    I can barely get 2-3 hours of sleep per night now as I am extremely sound sensitive. I don't think I would be able to sleep with the motor turning me on a regular basis. In addition, I would have to resign myself to "going down with the ship" should an emergency require exiting the house quickly (fire, etc.), as going with a rotating bed and being alone overnight with entail. I cannot transfer and use a Surehands lift.

    I can cath by myself anytime I need to. However, the adapted ergonomics of which as a quad has seriously damaged my thumb/wrist/elbow. I have an augmented bladder and cannot live with a Foley as a lifestyle, due to the plugging up with thick mucous at least on a daily basis and putting me at serious risk for AD.

    Whenever I have to be hospitalized and have a foley it is complete nightmare, as the staff are trained never to open up the closed system but I tell them it must be irrigated twice per day to pull out the thick yellow mucus, which has never gone away after 17 years. I don't know if this is normal bowel mucus, from the augmented part or inflammatory debris/reaction to bacteria.

    I need to keep my bladder flushed to keep down the mucus. However, this requires more frequent cathing, which increases my risk for introducing bacteria and leading to infection. Limiting my fluids so I can consistently go four hours would leave my urine quite foul.

  6. #6
    Currently I am on Social Security disability and employer long-term disability. However, most, if not all, employer long-term disability that is not Worker's Comp. or hazardous job benefits like police or firefighter only covers you to age 65. I've been on it for 18 years and have 7 more to go. It was 66% of my salary when I left. My Social Security disability and employer disability are barely enough to cover living in my house, which is paid off, plus food, utilities, etc.. It doesn't even come close to covering all of my salaries for my workers. As bad as my situation is now, it is going to get exponentially worse when I hit 65. As we know, Medicare does not cover long-term care. Medicaid yes, Medicare new.

    Therefore, one has to render oneself indigent to qualify for long-term homecare. While the consumer directed homecare programs in which you hire your own and they pay is a nice idea, they typically do not pay enough to lead to loyal employees. Therefore one would need to supplement their salary to sweeten the deal so to speak.

  7. #7
    Regarding sleep and being extremely sound sensitive... maybe your body can adjust to white noise?

    I know I have trouble sleeping without white noise. I actually use both fans and a white noise machine.
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

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