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Back Up Care Plan - When an Unforeseen Event Occurs

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  • Back Up Care Plan - When an Unforeseen Event Occurs

    A couple of days ago, "SCI55" wrote about his brush with a flu or cold and "Mrs.55's" bout of pneumonia and 8 day hospitalization. He said, "It has been a struggle coping, especially because I quit driving about five years ago. Depending on friends and neighbors is starting to wear on us." After wishing them well and sending hope for renewed health, some of us struggled with a jolt back to reality that occurs from time to time when your comfort zone is disrupted with thoughts of what would I do in a similar situation.

    I am 35 years post injury C6/7 complete. I depend on NL for just about everything care, cooking, housekeeping, transportation, gardening, handyman. And, she is damn good at everything she does. In 50 years of knowing her (48 years of marriage) she has rarely been ill. When she needed two bunion and torn meniscus surgeries, we had weeks to plan for a home health care agency and neighbors and friends cheerfully helped with food and transportation. Our two living trust proxies for our health care (if we become incapacitated) are registered nurses and life long friends. They stepped in for a long weekend, but only in a supervisory capacity, their professional lives have take a toll on their physical capabilities.

    When things are going along well and the way you manage care is working, it is hard to introduce someone from the outside and keep them occupied and compensated enough for them to be around to step in when an emergency arises. NL and I don't want part or full time caregivers around. We don't want to give up our privacy and spontaneity until we are forced into it...hopefully a long way away. We have interviewed a few agencies and signed up with a couple, i.e., filled out their paperwork and have a record on file with them, have the health kit (silly state requirement) they gave us at home in a convenient location. Aside from that what else can we do in case of one of these unforeseen emergencies?

    Your experiences and plans would be a great help.

  • #2
    I have tried to maintain a caregiver team to carry out essential activities in evening. I have three of them. They alternate covering the regularly scheduled evenings. If one gets sick or needs a scheduled evening off, one of the others can cover for her. I only recall one time when all 3 were off together. My wife was able to step in then. In my current predicament, a retired nurse friend of my wife volunteered to be an emergency backup until she recovers. However, she goes out of town on some weekends.

    One of these evening PCA.s has been with me for more than 10 years. In fact she was the first PCA I used at home. Following my first leg fracture in 2003 I had to wear a knee binder for several weeks. Transferring in and out of my wheelchair was impossible. Medicare covered home care and they provided me a CNA for a few hours each morning. When Medicare support was exhausted, I hired her privately to help evenings and we have been together ever since. She has been my best recruiter helped me put together my evening team. She was networked with several CNAs who she worked with on various jobs. She recruited my second longest employed PCA, who is a distant cousin of hers. The third position has been much less stable. For some reason unexpected things have cropped up causing them to leave, like medical problems and spouse job changes that required them to relocate. I had to fire one who was a college student in a pre-nursing track. She turned out to be totally unreliable. Hopefully she did not make it into the nursing program. That position in currently filled by the spouse of a soldier stationed at nearby Fort Jackson. He has about 2 years left of a 3 year assignment there, so my PCA?s days are numbered. She responded to an ad that I placed on Craigs List. All three of these PCAs have full time jobs and need to supplement their low pay, and live within 2 miles from me. I pay them well. Currently the starting pay is $15 per hour which is a good bit more than the agency starting pay of about $9.50 per hour.

    At the onset of my wife?s illness I had to find someone to get me out of bed in the morning. My wife?s retired nurse friend did this for about a week while I recruited a person. At her suggestion I interviewed a widow who was a member of her church. The lady had been expressing interest in finding some unskilled work to supplement her income. I invited her to give the job a try when the nurse was still getting me up. It worked out so she is now my morning helper.

    Things are working pretty well right now but at least 2 of the people on my evening team will need to be replaced because of their circumstances. I mentioned that the military spouse will be leaving within 2 years. One of the others has been having medical problems and recently she has been diagnosed as having M.S. How long she continues on the job will depend on the progression of the M.S.
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    • #3
      This was certainly an issue for my mother (severe MS). As her MS progressed, my mother went from being able to do all of her own care (transfers, caths, bathing, dressing, etc.) to needing more and more assistance. Initially my dad helped with transfers and took on the tasks of cooking, etc. They had always had someone come in weekly to clean, so that continued. They modified the bathroom to make it more accessible, and put in a ceiling track lift system.

      Unfortunately, when my mother fell from a toilet in a hotel room, fracturing both femurs, they had to make some changes. My father had already been struggling with helping my mother with her care (he had a bad back, and was 78 at the time). While myself and my sister had been urging them to get some help for my mother's care for some time, this injury was the crisis point that required this move. After she spent 6 weeks from hell in a nursing home, while we looked for good help, we were able to bring her home with two part-time PCAs (who we trained) who both got her up in the morning and put her to bed at night. She could still cath herself then, and my dad put her on the toilet for this between the morning and evening attendants. He was not comfortable learning how to cath her though, so once her MS progressed to the point she could not do this herself, we added additional attendant care, including having one of her first attendants change to a live in arrangement. My mother hated indwelling catheters, so we committed to helping her stay on intermittent cath. This attendant eventually worked for my mother for 13 years. She had another full-time job as a phlebotomist at a local hospital (2:30PM-10:30PM), so she got my mother up in the morning, did her bowel care, shower, dressing, and transfers, while my dad made breakfast. This PCA then cathed my mother, fixed her lunch and put her in her easy chair, then went off to work. We then had another person come before dinner, transfer her to her wheelchair, then to the bathroom, cath, and back to the easy chair where my dad would serve her dinner. This second PCA we recruited through Craig's List, and nearly all of the ones we had over the years (there were at least 8) were nursing students. The live-in PCA put my mother to bed, after cathing her and helping with oral care and dresssing when she got home from her other job, and then went to bed herself. Eventually some of the part-timers also took on the morning weekend shifts from the live-in PCA, who initially worked 7 days per week doing my mother's care so we could give her some time off.

      When my dad died after 8 years of this arrangement, we increased the hours for the early evening shifts, and eventually had the live-in person cover 0800-1330, then someone who came at 1500-2000, and then the live-in person come at 2300 to put her to bed. This PCA slept at the house of course, but my mother rarely needed care during the night. All together, in the last year of my mother's life we had 4 different people providing the care. I managed the schedule, and hiring/firing/training of any of the non-live-in part-timers. It was not easy, but it worked.

      I am very grateful that my parents' savings and both their pensions were able to support this, although my sister and I both told them (repeatedly) that if they somehow ran through their savings, we would help them, and that they could also obtain a reverse mortgage if absolutely necessary (they owned their house outright), which never did occur. The live-in PCA became like another daughter to them (and another sister to me and my sister), and now, 4 1/2 years after my mother's death, we still are good friends, and I stay in touch with several of her other PCAs as well.

      Our program worked for my mother. It might not work for everyone, but being creative, cutting and pasting as needed, making adjustments and changes as needed, and anticipating increasing care needs due to disease progression or aging, needs to be part of our planning for all of us as we get older, AB or people with disabilities.

      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.