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Thread: 24/7 Care Scheduel? Anyone?

  1. #11
    I would like to add a few notes because just in the beginning process of this too. We were told the Medicaid Waiver program in NJ would allow for my friend (quad) who is bed-bound with severe decubitus ulcers to receive up to 12-16 hours a day of home care including private duty nursing. I also understand there are comparible Medicaid waivers in most if not all states. These programs are designed to keep people from going to institutional care, and be cared for at home. However, Medicaid does not pay well. Not sure how all of this will work in reality, but the options are there once approved sound good on paper. In communicating with many, we heard the same things as most mentioned above. Do not go the 24/7 route, but rather stagger the care with part-time people. The live in 24/7 as I am told, will need to have a bed-space, and be given the option for food provided, sleeping at least 8 hours a night, etc. A part time person would work up to maybe 8 hours a day. Working also is the issue of benefits. Making sure to screen anyone who is in the house with background checks is so important. I have heard nightmares. Keep your personal items and safety measures in place. Hope this is helpful. Good luck!
    Last edited by med100; 01-06-2010 at 12:30 PM.

  2. #12
    Quote Originally Posted by new dimension View Post
    sci nurse...how are the aides compensated...seems it would be unaffordable to most..............
    By the money my parents worked and slaved all their lives to make for their retirement, and as my mother says, my sister's and my inheritances.

    I manage the hiring/firing of attendants and the schedule, and my bro-in-law manages my mother's funds and pays the bills from her accounts for her.

    Thank goodness my mother has the money from her SS, school nurse retirement, and her and my father's IRA money (in trust). It is not easy, and she does have a pretty tight budget, but we manage. She has way too many assets to qualify for any govt. assistance for attendant care, and as you know, regular health insurance (she has Blue Shield and Medicare) does not cover this type of care. That is one of the reasons I have a long-term care insurance policy and made sure that it will cover PCA care in case I ever need it for myself.

    (KLD)

  3. #13
    I also had BC/BS before my accident and horrified to learn I was not covered later for medical care I needed, Cobra downgraded it even more...KLD, your mom is so lucky to have you
    Last edited by med100; 01-05-2010 at 05:18 AM.

  4. #14
    Senior Member Cowboys_Place's Avatar
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    Life as a quad c 4/5 has finally caught up with me, physically, emotionally and financially. I guess I should explain that a little better and what it has to do with this discussion. After 25 years as a quad one would think a person would be a little more prepared and knowledgeable but for the past 25 years I have been well taken care of and sheltered in a way from the hard realities of living independently by my family. That though is quickly coming to an end and I have no idea what I'm going to do. I can't afford to pay for 2 3 or 4 different part time caregivers to take care of my needs. I get to much money from a settlement to qualify for any gov't assistance yet I don't get enough monthly from it to cover all my needs when the time comes (soon) to figure out how I'm going to survive without family help.
    I'm scared and at times (rare times but times) I've thought it would just be easier to end it all but I wouldn't even be able to do that without assistance since all my medication is kept out of reach.
    Thanks for the ear, take care
    Courage is being scared to death but saddling up anyway. .(John Wayne)

  5. #15
    Cowboy Place, will you situation allow for live-in care? You can cut costs by providing free room and board. In some places, foster caretakers are an option. My neighbor used this arrangement for her mother. A retired couple took her in and provided 24/7 care for what my neighbor said was a fraction of nursing home cost, and they gave her mother really good care.
    You will find a guide to preserving shoulder function @
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  6. #16
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    I live in Ontario, Canada. We have a immigration live-in care program. The average yearly total for one worker 40hrs wk is 18K. That is very affordable for someone with a settlement... or so I think?

    Since I posted this thread I have really thought a lot about what we may do. I think I have a pretty good idea in mind but I was curious if anyone would like to share thier input.

    I was thinking of hiring two people. Here is my rough idea of a schedule. One person would work Mon & Tues or Wed & Thurs for bowel routine at 9am for 2hrs then 6hrs at 11pm-5am for bedtime, cath & turn. Then Fri-Sun 8hr day or night shift. The two would firgure out who does days and nights on the weekends.

    So I hope that made a bit of sense. The whole thing works out to 16hrs during the week and 24hrs on the weekend (incl friday) for a total of 40hrs each a week.

    I think/hope that something like this would workout for Paul and I. I would like weekends off so that we can regain a little bit of normality in this crazy lifestyle. Perhaps I'm living in "la la" land? I hope not. I hear so many horrible stories! Is there no hope for us? Are we doomed?

  7. #17
    Senior Member anban's Avatar
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    I am a C 5/6 and live with my husband and two children, ages eight and six. I have one care provider who comes and for 4 hours Monday through Friday in the mornings, does bowel care every other day (Monday-Wednesday-Friday). My husband does get me out of my chair every evening, although sometimes I will call my care providers to give him a break. We have the routine down to a science, and it takes less than 20 minutes. He is responsible for getting me up Saturday and then I have someone who comes Sunday morning for four hours. I have two care providers, and I am so fortunate to have wonderful workers... I don't know that you are going to have very good luck getting someone to work overnight, but it is worth a try. How long has he been injured? I no longer turn in the middle of the night, which has been a big burden off of his shoulders. I also have a super pubic catheter, and a button on my chair which allows me to automatically drain my leg bag, and I attach a bag at night which drains in the morning. It is very liberating, and I do not need any assistance except to hook up my bag in the morning, and detached at night.

    Down here in order to receive the funding through Medicaid for in-home services, my husband is considered a "natural support", and as such is expected to do some the responsibilities of my care. Are you going to private pay?

    It gets easier, I promise...

  8. #18
    Quote Originally Posted by snowqueeneh View Post
    I live in Ontario, Canada. We have a immigration live-in care program. The average yearly total for one worker 40hrs wk is 18K. That is very affordable for someone with a settlement... or so I think?

    Since I posted this thread I have really thought a lot about what we may do. I think I have a pretty good idea in mind but I was curious if anyone would like to share thier input.

    I was thinking of hiring two people. Here is my rough idea of a schedule. One person would work Mon & Tues or Wed & Thurs for bowel routine at 9am for 2hrs then 6hrs at 11pm-5am for bedtime, cath & turn. Then Fri-Sun 8hr day or night shift. The two would firgure out who does days and nights on the weekends.
    I don't think you are doomed but I am not sure I understand the logistics of your plan. Are you planning to have the same person do a split shift of 9-11 am and then 11 pm-5am? I don't know how feasible that will be, just going off my own experience of trying to juggle a 24/7 caregiver schedule myself for a number of years and experimenting with a number of split shift configurations to try and accomodate the grad school and childcare needs of two of my full time staff. Would your expectation be that the 11 pm to 5 am shift person would stay awake all night? I am not criticising your plan, just trying to picture how it would work. Are you looking to hire two live-ins through the program?

    I am currently mulling over bringing in a foreign caregiver under a similar program in the province I live in, although if I do I would still be looking to fill the equal of 2 full time staff from an agency to cover balance of hours I require coverage for. But for stability reasons and to have a bit more flexibility with scheduling, I was thinking about having one person live in, although it would be more ideal to find somebody who already lives here rather than looking overseas. I have do have considerable mixed feelings about the program. The relatively low salaries seem somewhat exploitative and open to abuse to me. I do know people who have gone this route both for caregiving and childcare purposes and while some have had no problems and its worked out well for both sides--the person hiring and the person being hired. In other cases though it has not worked out for one reason or another. So I don't know if I am willing to take the risk.
    Last edited by orangejello; 01-05-2010 at 10:58 PM.

  9. #19
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    Thanks for your quick response. We would prefer live in care. We will be building a house with a small apartment for our caregivers.

    Right now I put Paul to bed every night. It takes me about 20 minutes too. I do turn him at night. I don't mind it because I go right back to bed so it's sort of like getting up for a pee at night anyway. But I do worry that with time I may get tired of it. Especially with age. I am 31. But I try to prepare myself for 41, 51 and so on. I know I cannot to it forever. Paul is over 6' tall and weighs 180lbs. I am 5'4" and 145lbs. It's hard on my body and I have only been doing this for a year!

    In canada we only get the basics covered. He does get his care every morning. But if I want them to come put him to bed then we have to schedule that at 7pm every night. I DONT THINK SO.

    So... I am just trying to plan things out before we get our settlement. And in the mean time I take excellent care of him.

  10. #20
    I was reading in NJ there is a program to screen healthcare aids who open their homes for someone with a disability for a certain fee. I don't know much about it, but thought this type of arrangement was different, and interesting. When I called, they told me they would not take someone with stage IV decubitus ulcers for that program (friend bed-bound) but the option might be open once able to sit in wheelchair. Another arrangement my SCI quad friend worked out while living at his mom's house was to invite another SCI friend to live there for a workable fee. They shared PCA and homehealthcare expenses at a fraction of what it would cost each alone. Just thoughts of other possible creative options.

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