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Thread: No choice but a nursing home

  1. #1
    Member Acarson's Avatar
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    No choice but a nursing home

    Without going into a big wheeze, it has come to the point where my wife is no longer willing or able to be my nursemaid. My only choice at this point is to get on to a nursing home. I am 100% dependent, so assisted living is not an option. I have heard so many horror stories that I am getting sick to my stomach and totally depressed. Are they that bad? It feels like I am living in a nightmare.

  2. #2
    I hope you think of another option. I may sound clueless here, but why is it that your wife nursing you is the only at-home option?

    I don't want to ask questions that must have been answered elsewhere, it just seems I'm missing much of the backstory.

    I'm sure, like most things, a nursing home is going to be what you make of it. Plan on being proactive about your care. They aren't going to care enough to keep you healthy unless you politely and persistently insist on it. I hope another option opens up. Good luck.

  3. #3
    Is it possible to get personal care assistants for in home care? Either at your current home or an apartment? Many people with your level of injury live at home with assistance. Hopefully others will pipe in with their thoughts.

  4. #4
    We never recommend that a spouse be the only caregiver. It is nearly a guarantee to either end the marriage or burn-out the spouse. No one should have a job they do 24/7, much less your spouse.

    You are an attorney, correct? Are you going to return to work? I would think that would assure you the income so you could hire PCAs to do your care and either get your own apt. or return to your home, with your wife NOT doing your care. No one with a SCI is 100% dependent, even at your level. You should not need someone with you at night, or during most of the day unless you are on a vent. Get your care organized so that most of it can be done in 2-3 hours in the AM and 1-2 hours in the PM. I would assume your wife would be OK with feeding you at noon time. This is what most of my clients who have your level of injury do.

    I won't lie to you. Most nursing homes are hell for someone who is alert and oriented. You can serve as an advocate for those who cannot speak for themselves there, but you will find they think you are a "trouble maker" even if you speak up for your own needs. Use your time there to make specific plans to get OUT. Go back to work, hire PCAs, and try to repair your marriage.

    (KLD)

  5. #5
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    I am the mother and caregiver for my 18 yrs old son who is a C2 quad on a vent since March 2006. I understand how hard it can be to be the full time person but, I wish you would reconsider going to a nursing home. I have found help for a couple of hours everyday with the bathing, dressing and transfers. I found that help through assisted living facilities and our local universities which have a lot of people who need part-time work. Ben's girl comes after her 3rd shift ends and another one who comes before she goes to class. My husband is a judge and I am sure, you being an attorney, you have a secretary... could she possibly be your day help/ or hire another? Please don't move, give yourself and your wife another choice. There is no place like home. Please listen to the SCI Nurse, she is right and I can promise things can and will get better, it has for us. It just is never as quickly as we would like.

  6. #6
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    I was in a hospice care nursing home for like nearly 3 months. They weren't that bad. They were really nice to me. But then again I was 18 years old and a lot better than the rest of the other patients! I think you'll be OK. Just be friendly to them and don't give them a hard time. Be flirty as well!

  7. #7
    Member Acarson's Avatar
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    I will try to make this short. Medicaid will not pay for in-home assistance and, I do not qualify for an assisted living facility because of the assets owned by my wife. However, if my doctor fills out a form stating that I am completely dependent, I will qualify for a nursing home no matter what my circumstances are, that is, the value of the assets that are owned by my wife.

  8. #8
    Senior Member taj2002's Avatar
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    I understand that your wife is no longer able or willing to be your primary caregiver. It is an overwhelming job especially when she is also caring for the children. She has every right to NOT be or want to be your primary caregiver. I have been there. My husband is a C3-C4 quad, and we have two school age sons.

    Are you saying that she is leaving you, i.e. divorce or that she is unable to care for you? These are two very different things in my mind. If it is the later, I wish that the two of you would reconsider and try to come up with a solution that you both can live with. I don’t want to relate my nursing home stories to you, but as difficult as this is with my husband, I couldn’t live with myself if I forced him into a nursing home knowing and having seen what I have seen.

    Have you really considered every solution? Does she work? I went back part-time just to allow myself some time away. Even if she just makes enough money to cover your care, it might be worth it. I think there are many options that maybe you guys have not considered. Is she willing to find or work with you towards a solution? If so, I think some of us caring for high level quads could help you come up with some of these solutions. There are many of us here that would be willing to talk to your wife and offer some advice and help if she was willing. Again, I am not saying that she should be your primary caregiver merely maybe she could help you figure out other options.

    Trish

  9. #9
    Senior Member lynnifer's Avatar
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    Whatever decision you make, we're with you.

  10. #10
    Moderator Obieone's Avatar
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    I usually hesitate to wade into these discussions when it involves such a high level of injury so I'll simply state that I trust you will get some good advice here ..... there is much to think about and hopefully those who understand better your situation can help you come up with some viable options to consider !

    As Lynnifer said ... were with you !! Peace and I wish you all the best!

    Obieone
    ~ Be the change you wish to see in the world ~ Mahatma Gandi


    " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
    Jane Siberry

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