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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
    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.
    Blog:
    Does This Wheelchair Make My Ass Look Fat?

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      #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.

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        #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)
        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.

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          #5
          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.

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            #6
            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!

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              #7
              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.

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                #8
                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

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                  #9
                  Whatever decision you make, we're with you.
                  Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                  T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                    #10
                    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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                      #11
                      Originally posted by Acarson
                      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.
                      so your wife's assets have more value than your well-being?

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                        #12
                        Yes Scott-apparently the answer is yes. If you are Rich enough to pay for your own care all is good. If you are poor enough-your entire net worth is less than $3000-Medicaid will step in and pay for everything you need. Anything in between too bad, so sad.

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                          #13
                          Thanks, Scott.

                          Weigh the urge to be noble against the need for self-preservation. Can some of those assets be sold to cover some part-time PCA?

                          Are you working? Is she? Are you divorcing? Why does she need a house if you are off to the nursing home anyway? Can you trade down to an apartment and spend the lawn-care budget on nursing care?

                          I assume that you went to law school to guarantee yourself some quality-of-life and financial independence. I don't see you getting a payoff and I don't understand why...

                          Something you posted today about needing a glass of water is still niggling at me. In that case, why do you give a rat's behind about her assets?

                          I'd live in a trailer if it kept my husband out of the nursing home, gladly. The priorities aren't jibing to me.
                          Blog:
                          Does This Wheelchair Make My Ass Look Fat?

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                            #14
                            sorry to hear about that acarson.without my family and their love and support i will be history.even when i was in the hospitals they came to cath me and feed me daily.

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                              #15
                              I hear you Andre. At one point I had help with day to day a couple of times a week, but not anymore. If you're destitute, you're covered. Anything less than utterly rich, you're on your own or headed for a nursing home. My state, Tennessee, has the highest rate of nursing home placements for those of us who can otherwise live in the community with supportive services.

                              I'm lower level than you and pretty incomplete. However, there are some things I need help with to maintain. I'm getting help from my family or I pay out of pocket for what I need. My needs are nowhere near what yours are, but I do understand about being in the middle financially and getting skewered for it.

                              I was in a nursing home for a month. It was a tough transition for me to go there after surgery, but I survived it.

                              Just be firm with what you want and need. Yes, you may be considered a trouble-maker by some of the staff for insuring your needs are met, but you'll also quickly learn who the jewels among staff members are.

                              You deal with a variety of people constantly in your professional life. All the skills, talents and abilities which make you the you that you are will serve you well in the transition. (Could I possibly say the word "you" one more time in that sentence?)

                              It won'r be easy, but it's doable.

                              I encourage you to think of the nh as a transitioning step. There may be ways to be creative legally to have your own place and have the help you need to live in the community and not a nh. I believe you have a friend who's well-informed about the so-called good versus bad nh. He may be able to also navigate the craziness that is "the system" when it comes to healthcare.

                              When discussing which place to go in terms of nh's, you may wish to check in with the Longterm Care Ombudsman through your Area Agency on Aging and Disability. She/he will have info on nh's with fewer problems than others. They field the complaints against nh's, advocate for residents. Your legal peer who specializes in nh abuse may know the LTC Ombudsman. In any case, I'll find the contact for these sorts in your area and e you.

                              Also, whatever you decide or do or don't do, we're here for you, support your decisions and choices. I can't make your decisions for you, but I'll support whatever those decisions are to the best of my ability. I'm sure most others here feel the same.

                              Stay connected with us whatever you're doing, wherever you are. One of the things we seem to do best here at CC is to support each other when no one else understands.

                              There are members here who've been in nh's longer term and have managed to move into their own places. I'm hoping they'll check in on this thread or are in contact with you to tell you how they did what they did.

                              You're not alone, Andre. There can be life after nh's. THose places are not necessarily the last stop.

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