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  • 24/7 Care Scheduel? Anyone?

    My husband and I are discussing live-in care 24/7. The subject is very difficult to figure out. He has a bowel routine every other day. It takes about 2 hrs. He starts at 8:30am with a supp. then on the toilet by 9. Then he is pretty much good for a while. He needs in&out caths every 4hrs. Then we like to stay up anytime from 10pm to 2am. Sometimes we are up late. I would like someone to do all his care. We are debating if we would need 2 or 3 caregivers??? How would weekends go??? I am looking for someone who is living with their spouse and has full-time care for some advise.

  • #2
    live/live out?

    if live in, my advice is a m-f aide and sat-sun aide. and change your habits so as to not be up at 2am needing help.

    these people need rest and stability too

    otherwise, burn out will ocurr

    Comment


    • #3
      I agree. Either 3-4 caregivers part time, with a day shift and an evening shift, or one live-in for M-F and then an additional 2 for weekends AND change your sleep habits to a more reasonable schedule.

      My mother has a live-in attendant who also has another job. On weekdays she does my mothers AM care from 0800-0930 (ROM, cath, bowel care, bathing, dressing, oral care, fix and set up breakfast) and then is available but able to do her "own thing" such as watch TV, read, etc.Once weekly she sets up pill boxes, and if my mother has doctor's appointments, she takes her in the van. At 1300 she does another cath and fixes lunch, then leaves for her other job. At 1530, a second part-time person comes (3X/week on weekdays) and stays until 2000, during which she does some transfers, cooks dinner, and does one cath). She is a student, so she is also allowed to study during any free-time during this time. A third part-time student does this two evening a week as well. At 1030 the live-in attendant comes home, then gets my mother into bed (undressing, oral care, a cath, position for the night, etc.), then goes to bed herself. On weekends, she is "off" (but still lives at the house), although she does the bedtime routine. On weekends, the second part-time person gets my mother up at 0800 (as above), stays until 1300, then comes back at 1530 and stays until 2000. It is a fairly complex schedule, but works for all. Both the part-time attendants have some flexibility, and can cover for each other for emergencies.

      The live-in attendant gets a set weekly salary (she has worked for my mother for 9 years now), while the other two are paid hourly. Everyone gets a check weekly. The first part-time person we found through word of mouth from a nursing instructor we know, and the second we got from Craig's List.

      I just came back from spending the weekend with my mother so that the live-in could take 4 days out of town, and also covered for the other two, so everyone got time off.

      Live-in is the most difficult to recruit because most people have their own families and want to live with them. Also, it has been easier for us to maintain my mother's live-in attendant because of her having another job (as a phlebotomist at a local hospital) because she has benefits such as health insurance and retirement through that job. It is harder to find people to work for you full time unless you can provide benefits.

      (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.

      Comment


      • #4
        You are doing all his care yourself right now, I think I read?

        I am wondering if you are jumping too far from NO help, to 24/7. If you had someone come in for 4 hours in the am, get him up. (Doing a cath at the beginning and end of the shift). Then he would be good for 4 hours, and then someone coming in for the next cath, and supper, etc. Finally someone for bedtime at say 10 or 11. (I think you would have another cath to worry about in there ...)

        On nights you stayed up very late, you could handle the bedtime? Because even live in, you will be hard pressed for a 2 am bit, unless you lucked into a night owl.

        Also is he locked into 4 hours on the cath? A lot of people go 6 hours, but I know some can;t (myself included).

        Not sure of his level, could he possibly manage to learn to cath? I know they make a holder for the cath for people with poor grips. (Not sure that is even a possibility for him). Or might a SP be an option?

        By the way, when looking. That 8:30 am shift sounds like a perfect part time job for a Mom with young kids in school. Get them off, and then come over. Consider that as one of your target audiences when you are advertising.
        T7-8 since Feb 2005

        Comment


        • #5
          You need to get other people involved asap and at least have a plan to provide all essential care without you. I have known a couple of instances where exclusive caretakers have been in accidents or suddenly got seriously ill. It takes time to find people and train them if necessary.
          You will find a guide to preserving shoulder function @
          http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

          See my personal webpage @
          http://cccforum55.freehostia.com/

          Comment


          • #6
            Holy cow, 24/7!? Why don't you have him get a supra pubic catheter so you don't have to do it all the time. I did and it's really made a big difference in my independence in my life. Now I only need a caregiver for four hours in the day and two hours at night. It's made a world of difference.
            C-5/6, 7-9-2000
            Scottsdale, AZ

            Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

            Comment


            • #7
              According to the OP's original post, her husband's injury is C5-6. If he has tenodesis on either side (C6) it is very likely he could learn to cath himself with the correct adaptive equipment. I even have a client who is a C6 one-armed amputee who caths himself independently.

              (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.

              Comment


              • #8
                I know you are an experienced man. This is a difficult but not impossible thing to do. I myself have had to use live-in attendants through the years. During some very lean times I used to offer a salary, plus room & board.
                It was a very difficult thing to do. I went through a lot of people that turned out to be very lazy, thieves, drunks, drug addicts etc.
                I had one fellow that lived in for over 3 years. He was a burnt out Vietnam vet and he was happy to go out one time a night on week-ends and drink a forty ounce every evening.
                It is hard to find someone that you can get along with. I do not smoke or drink these days. I have had people tell me no they do not smoke. I can smell smoke like a guard dog. Most of the time they lie about it.
                I could write you a book on live-in experiences.
                I feel for you. Best of luck. Be sure and get background checks, references and drug screen if feasible.
                I just got through living with a family with 3 teenagers. This was a transitional period for me in my life and thank the Lord it was only a few months. I was recuperating from double pneumonia and really did think I was going to die. There was no smoking but when the mom left the boyfriend, and kids smoked them up. It was hard to breathe.
                I do well to coordinate 3 attendants and keep them all on the same page.
                They do pretty well.

                E-mail me any time if I can give you any advice about doing this.


                Again good luck,


                Dave

                Comment


                • #9
                  oh yeah, I have 4 caregivers. Weekday, weeknight, weekend day and weekend night that way no one really gets burned out. The hours are run are from 10:30 a.m. until 2:30 p.m. during the day and 7:30 p.m. until 9:30 p.m. at night. With the super pubic catheter, all I have to do is change bags when I go to bed. And I hope you're not his only caregiver. That's a really good way to burn out your relationship. I tried having a couple of friends is caregivers and now we barely talk because it was just a strain on our friendship. When I do hire caregivers, I just go to Craig's list and put an ad on their. Right now during his rough times I'm getting at least 20 responses to any ad that I put in. Good luck with it.
                  C-5/6, 7-9-2000
                  Scottsdale, AZ

                  Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

                  Comment


                  • #10
                    24/7

                    sci nurse...how are the aides compensated...seems it would be unaffordable to most..............

                    Comment


                    • #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, 12:30 PM.

                      Comment


                      • #12
                        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)
                        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.

                        Comment


                        • #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, 05:18 AM.

                          Comment


                          • #14
                            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)

                            Comment


                            • #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 @
                              http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

                              See my personal webpage @
                              http://cccforum55.freehostia.com/

                              Comment

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