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Thread: Caregiving in India

  1. #1

    Caregiving in India

    I just came back from a tour of several spinal cord injury centers in India. There is much interest and potential for research, particularly clinical trials. Most of the hospitals that I visited take care of as many as 2000 people with spinal cord injury every year. Just one of these centers alone can carry out the NASCIS 2 trial (500 patients) in less than 6 months.

    However, it was the caregiving aspects of India that really caught my attention. In India, the family is involved in the care of the patients in the hospital from day 1. A family member is sitting by the bed in the intensive care unit and all straight through the entire hospitalization. They learn to do the catheterization, the physical therapy, the exercises, the turning, etc.

    The contrasts between the centers could not be greater. One center in Bombay had almost no technology but incredible compassion and community. One center in Delhi had state-of-the-art technology with CT/MRI and surgical suites alongside rehabilitation facilities. In the places without all that much high tech, they have invented impressive low tech solutions. Most of the patients are up and are highly motivated to start walking as soon as possible. Most of the rehabilitation is carried out in large room with many people doing the same exercises together. This community approach towards rehabilitation is very impressive. More experienced families teach the new ones on how to handle specific situations. Most of the patients are in open wards where they looked after each other.

    Wise.

  2. #2
    Senior Member Scorpion's Avatar
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    However, it was the caregiving aspects of India that really caught my attention. In India, the family is involved in the care of the patients in the hospital from day 1. A family member is sitting by the bed in the intensive care unit and all straight through the entire hospitalization. They learn to do the catheterization, the physical therapy, the exercises, the turning, etc.
    Dr. Young, maybe I was lucky with the hospital (Halifax in Daytona Beach) and rehab center (Tampa General), but that description sounds like what went on with my parents and me. In ICU, visiting hours were 24/7 for my folks, and in rehab, they were immediately schooled in what I needed and how they should help me to do more and more on my own. This was back in 1990/91 by the way...maybe I just got lucky?

    ~Rus

    "Because you're not promised tomorrow." ~ Stuck Mojo

  3. #3
    Scorpion, in most U.S. centers that I have been in, the family is shooed out of the ICU because they were considered to be in the way. Most of the time, they were considered bystanders rather than participants. Wise.

  4. #4
    Senior Member Scorpion's Avatar
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    That's no good. My parents were asked to leave on a few occasions, like when my lungs collapsed and they had to put chest tubes in, but for the most part they were allowed to be there sround the clock. Nurses often ignored the '2 visitors at one time' rule. But there's always one stickler for the rules. The great thing was, when I was uncomfortable with the way a couple nurses treated me, particularly during the night shift, other nurses made sure I never had to see them again. I have great respect for nurses, men & women, who have the patience and compassion of saints. It's sad to hear my experience may have been the exception, not the rule. Participation in my care was not encouraged but mandatory at the rehab center whenever my Dad or Mom was there. Also encouraged was the patient taking charge of their situation in rehab, from knowing what meds we were on and what doses to making sure we got down to therapy, even if we couldn't get down there ourselves. It was almost 11 years ago, but sometimes it seems like yesterday--many of those people were lifesavers, and not just in the biological sense.

    ~Rus

    "Because you're not promised tomorrow." ~ Stuck Mojo

  5. #5

    Re-Caregiving in India

    Wise,

    It's good to know you're back and safe; our hearts were all with you as we read your e-mails.

    I have to agree with Scorpion - My son was in ICU at Richland Memorial Hospital in Columbia, S.C., for one month, and the nurses there were fantastic; I was at Matt's side from 6:30 a.m. to 10:30 p.m. - could have stayed all night, but they wanted to be sure I was getting some rest, too (as if I could rest at a motel right off the Interstate, but close to the hospital!). They were as supportive of me as they were of Matt; and we were there so long, even the cafeteria ladies were calling me by name and offering their prayers! We had one or two nurses who were a little hardline - as Scorpion said, we didn't see them again! We also had a trauma resident with us, who had been doing an EMR rotation when Matt came in - his name is Todd Krump - I will never forget his kindness, and caring; if he saw me in the cafeteria chugging my Nth cup of coffe, he would come and sit with me if he had time; if I was walking the hall, he would put his arm around me and walk with me a while; we shed so many tears with him when we left to come to NJ; he sent Matt cards and letters, and told us he had matt's pix on his fridge.

    Matt also had up to 16 visitors in the ICU! At one time, I counted nurses and respiratory therapists among them!

    Our experience at Kessler rehab was the same as Scorpion's; we as family were encouraged from day one to participate in Matt's care and the learning process which we all had to go through; my most vivid memory is coming back from a session on catheters, UTI's, etc; walking into Matt's room where he was in fullblown AD because of a ?-clogged catheter - ? sphincter spasm - and watching the nurses do a cath change, thinking, 'oh, my god, I could NEVER do this! But we have - I could do it in my sleep now.

    I know there are other folks who have had nightmare experiences with acute care and rehab; I've talked with some of them; but I'd love to hear from others around the country about their experiences in hospitals and rehabs.

    I also know there are folks who are dealing with community docs who don't know a thing about SCI; we took Matt to a local neurologist for regulation of his Dilantin dosage; she had no idea what AD was, and didn't know much about SCI either; once, Matt had what we later learned was a 'partial simple seizure'; when we told her about it, her response was, 'oh, well, maybe he just had a 'spell'!?@?!?@K@?! Needless to say, we're not seeing her anymore!

    I wish we could form a network to be available at acute care centers, and rehab centers, to help family members and share what we've all learned; there just doesn't seem to be a support network in place for caregivers during that acute phase, when you're absolutely numb and grief-stricken, and the future looks absolutely bleak. Kessler has a family support group that meets (I think) once a week, but it's hard for a lot of folks to attend that.

    Enough rambling - again, welcome home!

  6. #6
    Thank you very much for your good wishes. I am glad to hear that the general experiences of the caregivers on this forum is that they were participants in the care early during the hospitalization. Another possible interpretation is that the caregivers who come to this forum are the ones who were most involved in the care and those who weren't may not be taking the time and effort to come visit this site.

    One of the things that I learned on this visit to India is that the earthquake at Gujerati province of India last year resulted in over 6000 spinal cord injuries in one day. This is just counting the survivors. I don't know how many with spinal cord injury did not survive their injuries. In one day, they had almost as many spinal cord injuries as this nation had in a year. The concept is mindboggling.

    Wise.

  7. #7

    Caregiving in India

    Oh, how my heart ached when you stated the numbers of spinal cord injuries as a result of the earthquake in India - how devastating - I don't think we heard those numbers on the news.

    Isn't there an organization that collects and donates used wheelchairs to the needy?

  8. #8

    used wheelchairs

    I live in India and Dr. Y is right that the family is closely involved in the caregiving process. What is lacking though, is access to basic technology which might make the lives of thousands of SCI affected people here, a lot happier - Wheelchairs would be one example.

    Marmalady, as far as I know, there are no organizations setup to accept used wheelchairs/other equipment for SCIs. I have been thinking about this exact same thing, maybe I will find out whats involved in setting something up.


    - Sam

  9. #9

    Some organizations

    Here are a couple organizations that might be helpful:

    http://whirlwind.sfsu.edu/

    http://icdri.org/

    http://www.wid.org/

    (KLD)

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