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Thread: I need HELP please!!!!!!!!!!!!!!!!!!!!!!!

  1. #1

    I need HELP please!!!!!!!!!!!!!!!!!!!!!!!

    I think I've posted this b4 in this forum, I'm not sure how much you know about care-giving in states out west like WA where I am. I could really use some sites 2 look at about having my hubby getting pais as my care giver or getting somebody 2 be my aide so he can go get a job, he's been unable 2 get any job cause he can't leave me at home alone even though the house we live in was built 4 me & I have my big elec. chair so I can go out if I want, but if I have some sort of problem while he was at a job than I'd be screwed.
    any help would greatly b appreciated
    thank you 4 listening,
    REDSWHEELZ

  2. #2
    What is your level of injury?
    What care do you need during the day/how many hours of care do you need in a day?

    All the best,
    GJ

  3. #3
    Senior Member zillazangel's Avatar
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    Many states don't allow an immediate family member to be a paid caregiver through their state programs (NC doesn't for example). You need to talk to your local Independent Living center. I echo GJ's comments about your level and what your needs are too.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  4. #4
    Unless you are a very high quad, you should be able to develop a plan for the type of problems that typically occur. My husband has a C5-6 SCI and even the few times he's been on bedrest, I've been able to go into work. What kind of "problems" do you have during times he would be at work?

  5. #5
    I'm a c5/6 complete quadriplegic, I need help getting in2 the bathroom toilet 2 do my every other day BM than help getting 2 the roll in shower, I don't have a shower chair. I sometimes need help w/ dressing & putting on my shoes. I can do transfers from bed 2 chair & vice versa, most of the times I'm good during the day. There r times when my indwelling catheter will come out fully inflated, there r also times when I have an xplosion from the other end which r just 2 xamples I can list which r pretty xtreme conditions. If he was working I'd b doing the house work which is hard like vacuuming, unloading the d/w, getting dinner ready as I have limited use of my fingers which making using knives, putting items in/out of the oven coz if he was working I'd b home by myself. He was working when we 1st got marred but my abilities have deteriorated over the years so he had 2 stop working, my finances don't qualify me 4 Medicaid but I can't afford 2 pay 4 an aide. He recently tried 2 apply 2 get help w/ food, medical & possibly home help so he can get a job but haven't heard anything yet.

  6. #6
    Senior Member zillazangel's Avatar
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    None of that sounds like you need help in the daytime such that it would prohibit him from getting a job. There will be emergencies that arise but that just means you need a plan to deal with those infrequent events, not a full time caregiver.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  7. #7
    Quote Originally Posted by REDSWHEELZ View Post
    I'm a c5/6 complete quadriplegic, I need help getting in2 the bathroom toilet 2 do my every other day BM than help getting 2 the roll in shower, I don't have a shower chair. Would it make sense to get a shower/commode chair and do your every other day bowel program in the evening and after it is finished, take your shower when your husband would be home?

    I sometimes need help w/ dressing & putting on my shoes. Could you dress to the best of your ability while your husband is getting ready for work, then have him help you with the things that are hard to do? If you are in your chair before he leaves, you would be set for the day.

    I can do transfers from bed 2 chair & vice versa, most of the times I'm good during the day. There r times when my indwelling catheter will come out fully inflated, there r also times when I have an xplosion from the other end which r just 2 xamples I can list which r pretty xtreme conditions. How often do you have trouble with your indwelling foley catheter? If it is often, you might consider a suprapubic catheter that may be more reliable for you. How often do you have bowel accidents? Possibly doing your bowel program at night, you would have fewer accidents, and if they did occur, your husband would be home during the evening and night to help.

    If he was working I'd b doing the house work which is hard like vacuuming, unloading the d/w, getting dinner ready as I have limited use of my fingers which making using knives, putting items in/out of the oven coz if he was working I'd b home by myself. Home chores are not easy for C5/6 complete quads. But maybe you and your husband could schedule some time on the weekends to do household chores, plan and precook meals for the week which would lighten the load of chores you would need to do during the week.

    He was working when we 1st got marred but my abilities have deteriorated over the years so he had 2 stop working, my finances don't qualify me 4 Medicaid but I can't afford 2 pay 4 an aide. If your husband is working, there might be some money available to hire a weekly or every other week cleaning service or a aide to come in part time to help with your needs. He recently tried 2 apply 2 get help w/ food, medical & possibly home help so he can get a job but haven't heard anything yet.
    I don't know if Washington state has provisions for paying spouses as caregivers. But, you should be able to find out fairly quickly by talking with a health and social services counselor or contacting a center for independent living. I've read about spouses being paid as caregivers in Canada, but not in the US.

    All the best,
    GJ
    Last edited by gjnl; 07-06-2012 at 07:40 PM.

  8. #8
    Center for Indepenence---In Lakewood. Wash. They have a web sight. Washington has a copes program that helps pay for help but I think it is through Medicare/medicaid. Good Luck

  9. #9
    Senior Member anban's Avatar
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    OR has a spousal pay program, but it precludes getting any outside employment. If you don't qualify for Medicaid, you will most likely need to private pay someone for the hrs. you need them the most. I'm c5/6 and can't do transfers and have no finger use. I have help in the am when my husband's at work and then am on my own until he gets me out of the chair @ night. I understand your concerns, but as far as I know, you will most likely private pay for any help.

  10. #10
    We get up at 5 am during the work-week, and it's a 2 hour routine to get both of us ready for work. Jim does a bowel program every morning followed by a shower. I need to do that BP but he showers independently. I get him dressed and he transfers independently from bed to chair. During my "down-time" I throw a load of laundry in, take my shower and start to get ready for work. We used to do his BP and shower at night but find he has fewer accidents by doing it in the morning. If he has an accident now, it's often during the night, which works better for both of us. A few years ago, we decided to hire someone to clean our house every other week. I'm not sure why it took us so long to make that decision, but it was one of the smartest things we've ever done!

    My job is such that I can often leave work, if he has an accident or his urostomy leaks, but this rarely happens. What kind of work would he be looking for? Any options to work from home?

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