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  • #16
    Oh, I forgot to mention that this is a guy who lives alone and has no family to help him. Perhaps if he had family to help him he would not need so many caregivers. Everybody's situation is different....

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    • #17
      Originally posted by Veganman View Post
      Oh, I forgot to mention that this is a guy who lives alone and has no family to help him. Perhaps if he had family to help him he would not need so many caregivers. Everybody's situation is different....
      with all due compassion, my family has been on the East Coast for the entire duration of my SCI. I'm on the left coast. I've managed exclusively with hired caregivers. And I've had a wonderful life with one care worker still with me for 18 years, couple of others 8 to 10 years.

      Is this fellow easy to get along with? The question has to be posed because of the number of staff he has gone through.

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      • #18
        Veganman, I am soooooo with you on your wishes. In our experience, a PCA lasts right about 3 months before s/he starts slacking off, no matter how great they are at the start. And this refers to only 15-20 hr/week caregivers that we hire now. When Chad lived alone with no family, the turnover was enormous. And I assure you, Chad is a stellar guy and very easy to get along with - van quad, you are a true exception if that has been your experience.
        Wife of Chad (C4/5 since 1988), mom of a great teenager

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        • #19
          Veganman is easy to get along with most of the time but he gets really pissed off when a caregiver drops him on the floor, breaks his wheelchair, yanks on his sore arms, etc. He does have three devoted cargivers - two have been with him for whole time since he got home from rehab 2 1/2 yrs. ago. It's the weekends that have been very difficult to fill. One of his wonderful caregivers is going back to her home country for a month which has put us in scramble mode and prompted my original post of this subject. The biggest problem is finding a caregiver who can master the bowel program.

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          • #20
            Colostomy = no more bowel problems, ever. No need for caregiver for this job. Maybe consider it.

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            • #21
              Just keep trying I have no relatives close and live by myself. I do not get anywhere near 24 hours care a day but I do get some hours. I have one worker that has been with me over 10 years on and off. I moved to another town to live with my mom with alzheimer's for a while. I have another that has been with me over a year. I can't handle someone around 24/7 either.
              Currently I need one part time worker and that position has been a challenge tro fill.
              Like I say keep trying. Run an ad in the paper, make flyers to post at areas like a laundrymat, College etc.
              I have never relied on an agency to find my help.

              Good Luck

              Dave

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              • #22
                Update: After massive search via craigslist I do believe we have found some caregivers who might fill the need we have at this time. Thank you all for your input. On a different note, Veganman is getting a lot of recovery - he is three years out from injury and has gained most of his recovery in last few months - at this time, surgical procedures to make him more independent not part of the plan. He would like to keep his colon at the moment and keep urine coming out of it's regular path. He is also getting some hand movement back and working vigorously with hand therapist. Perhaps if these things don't come back in next few years he may consider surgery. Three years may seem like a long time but he - and all of us - would like to see how much recovery he can get back before more invasive procedures are ventured. Thanks again.

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                • #23
                  Yeah a colostomy is a big step in anyones life especially only 3 years into
                  SCI

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                  • #24
                    Originally posted by reedyd View Post
                    Yeah a colostomy is a big step in anyones life especially only 3 years into
                    SCI
                    Some people have to get them as soon at they have a skin issue. A Colostomy can be undone at any time and you can go back to doing your program. My doctor in rehab wanted me to get one like a year or two out but if I remember right he even mentioned it at a option while I was in rehab. He even said of all the people that got them because of skin issues only one of his patients had it undone and she was a 15 year old girl who wanted to wear a bikini. So that says a lot for the procedure and the ease it brings to the life of a person with SCI.

                    Stevie P

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                    • #25
                      I know I have a urostomy and it is the best thing I've done as far as cutting back on UTI's and cleaning. I am just saying with a newer injury surgical procedures are a big deal. They tried to get to agree to a urostomy like 34 years ago and I thought they were crazy.

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                      • #26
                        your location

                        hi veganman! i understand your disappointment. however you didnt mention what part of US are you from.

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                        • #27
                          Veganman, I just read this and thought I would comment. I am on the east coast and advocate for people with SCI for many years (I'm incomplete quad). Not finding good PCA's, enough funding to keep them (provide health insurance/benefits) and the challenge of care, hours, is a huge problem. Starting a certification program to train SCI PCA's is a good idea, just not sure that would work. But the need for those with SCI, ALS, MD, (pediatrics), is great.

                          Someone said colostomys are great and always reversable. No. First, if someone has a healthy colon, why cut it, resect, and cause permanent injury? Some colostomy's are not reversable, and fail. Those with hard to heal wounds (years) probably will not heal -resection fail. I have also heard about serious complications (death) from colostomy and attempted resection, sepsis, etc.. It may work for some, but certainly is risky. Also, any new hole in the body is another source of infection. (Flexi-seal catheter fecal management mentioned by someone as helpful short-term and non-invasive)

                          My friend c5 quad, has non healing wounds for two years (sacral, coccyx,etc). Like your friend Veganman, he developed serious complications due to mistakes and no ROM at a hospital. He was in a bed in ICU at a hospital in Somerville NJ for 9 months. They just left him there on his back, not turning him, blaming him for being in pain and not wanting to have wounds changed, etc. His arms also are completely frozen and rigid, with his elbows sticking out at his side, making it impossible to turn him. He is in incredible pain. His arms have pressure sores in crease, elbows, etc. He has heel wounds (at hospital, had 19 wounds, now down to 7). Cannot turn him because elbows stick out. He is still in a hospital since 2007 (not same one). He has not been able to go home yet. His stage IV ulcers to the bone, so large part of his buttocks were actually just down to the bone,muscle. It takes the hospital sometimes hours to respond to him, even when he is laying in his own wet "mess" and they know he cannot turn or move himself (no BM program). He coded a few times at this community hospital under their "care" (ie. neglect). He had sepsis, got a GI tube after not eating, mrsa, and family told by hospitalist no hope for him, put him in hospice and let him go. Luckily, they did not sign the DNR, and listen to this advice. The doc also wanted to ship him to a local nursing home, pay for the hospice to sit with him, and get him out of the hospital. So what was their agenda? If he did not have someone advocating for him, as he told me, I would have been visiting him at his grave.

                          He is still markedly deconditioned, young (early 20's) and very depressed, angry. The hospital system has very much failed him. After he left Kessler "before" these complications and injuries occurred, he was eating on his own (splints/bracing) and driving a powerchair. Getting stuck in the hospital without family able to care for him or bring him home has been a living nightmare. There are those (including a fellow quad) who are telling him to bite the bullet, that he caused his own problems at the hospital because he was not nice enough to care staff (swearing), that he did not tell them to turn him enough, etc. Easy to judge others. They are wrongly assuming of course, a community hospital like this will just have trained staff to do ROM, turning, BM program, etc and jump to his aid if he is "nice" and asks? One day I watched for 8 hours. Not once did they turn him. When he asked for wound care several times and to adjust his legs (heels touching), they refused. Constant writing, family present and advocating, has not seemed to help. They claim their hospital does not have the staff to care for his needs, claims his wounds are not acute care (even though caused by their hospital and negligence). What I saw is nursing staff complaining it took 4 people 1.5 hours to change his wounds, and told him they cannot come and turn him or move him when he wants. Did not have an accessible call button. I was told their call button on the floor was broken for everyone.

                          So, he also is c5 quad- but cannot make assumptions he has the same capacity he had after leaving rehab- He now has no use at all of his arms/hands legs rigid, spasms, hands clawed and contorted and not sat up in a chair in two years, or been outside, not been able to enjoy any life.

                          Nursing homes will not accept him. Say he is too young and they cannot care for stage IV wounds. He has been shipped around. Last nursing home sent him back to the hospital for wound care at the hospital he acquired all the wounds to begin with. They told his mom she had to pay them out of pocket to keep him there, after the nursing home doctor dropped his care. Kessler and other SCI rehab will not accept him back for SCI rehab for wound care, telling us he has to be able to sit in a wheelchair. The PCP office just told me last week they will not accept him coming in a stretcher, so he cannot get a PCP. The LTAC which say they are "long term" have told us he will not stay there more than 28 days. We are trying to get him home right after New Years. His mom (single with young children) will try taking care of him with aid of hired help and Medicaid waiver support. There is no place for him. Unless he is home with family, not sure where he will have to go. A long term SNF may be the only answer, but again, with his age, history and severity of his wounds, contractures, getting his wounds healed and back his life is a huge challenging problem.

                          I would like to add to others here to not be so judgmental about others SCI circumstances. We do not know their circumstances, and biting bullets may be okay for some, not everyone. Good luck. Wish us luck too. It is a very long road ahead. So thankful for this list and support. Happy New Year- Lets wish for health and better healthcare system and home support in 2010.
                          Last edited by med100; 12-26-2009, 04:39 AM.

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                          • #28
                            I think this message is so spot-on that I just had to hi-jack

                            Originally posted by lilsister View Post
                            Please remember that not every one has the same abilities, whatever the official level or completeness of paralysis. Many people have other disabilities or medical problems which prevent your level of acheivment. Can you imagine how your assumptions make them feel? It really annoys me when this happens.
                            this thread to offer my endorsement. The fact is, yes there are obviously many ability consistancies with sci's of the same level, but there are also many other factors that are unique to each person's sci that make our abilities different. How egotisical can people be when they write in about how they are of a same level and ie; they can feed themselves, transfer themselves etc. Most of us try to recover and as independent as our particular spine damage allows us to be. Who really gives a fuck whether your particular spine damage is slightly better enough to allow you to do that much more. Good for you, and yes having a positive mindset is important, but fyi, you're not superman, you're just luckier.

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                            • #29
                              Another bone to pick; the colostomy peddlers.

                              Someone said colostomys are great and always reversable. No. First, if someone has a healthy colon, why cut it, resect, and cause permanent injury? Some colostomy's are not reversable, and fail. Those with hard to heal wounds (years) probably will not heal -resection fail. I have also heard about serious complications (death) from colostomy and attempted resection, sepsis, etc.. It may work for some, but certainly is risky. Also, any new hole in the body is another source of infection. (Flexi-seal catheter fecal management mentioned by someone as helpful short-term and non-invasive).

                              I was also about to comment on the colostomy peddlers, when I came across this comment from Med100 beating me to it. I have to express my endorsement here as well. While info regarding the pros of colostomys should be out and available to all, I've yet to see many sci arbitrarily installing stomas without other mitigating med issues. The fact is that you're merely swapping one issue out for another. You're creating another medical condition requiring skilled care.

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                              • #30
                                med100, incredible story. It leaves me speechless. And sad.

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