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Thread: Independent living after SCI

  1. #21
    Ummmmm, I'm with Scaper on this. You are getting quite specific on his care. It's crossing a line.

    Also, you have referred to what you do as "babysitting" and "just hanging around all the time." You're also dissing this man because he is "your typical 60 something fat, weak, American guy."

    You go on to say you "don't mean to ridicule anyone" (and here comes the ridicule) "however this man does bicep curls with one or two pound weights."

    It would seem you may not be a good fit for the field. While you may think you hide your disdain for this man, it comes through. If we are seeing and reading it on this message board, you can bet it's obvious in person.

    BTW, there is never a reason for a PA to just hover and hang around. There is ALWAYS something to be done. You've got laundry, meals, assistance with dressing, bathing, voiding, working out, getting outdoors for a little exercise for you both. He's fresh from rehab, two months into a life altering injury you do not begin to understand. It would seem empathy is not your strong suit.

    Instead of mocking this man (on a public message board --- geez) for what you view his deficiencies to be, you could provide assistance, encouragement and help him adjust to his new body. Encourage him with his bicep curls, with his own self care to the extent he is able and get outdoors with him on a flat, hard surface so he can push, get some of that fresh air and sunshine we all need.

    You may not be there long, but you are there to help, not "babysit."

  2. #22
    Yeah what about help him with therapy? Get him outside or help with something other than sitting on your ass and doing nothing like you say. I am sure you have been to therapy with him how about practicing these things with him at home. As they say practice makes perfect.
    T6 Incomplete due to a Spinal cord infarction July 2009

  3. #23
    I would strongly urge the return to a qualified SCI center for in-patient rehab. program. There is much more he can do with the help of trained rehab. professionals, including consultation with a psychologist. A traumatic injury at his age is much more difficult for someone than injury at a younger age.

  4. #24
    I don't think that his insurance covers more in patient unfortunately.

    And for LaMemChose and Smashms up there, any time you want my job, just send me a private message. You would obviously be so good at it, I'd let you take it in a heartbeat!

    You'll get $600 a week, room and board and all you've got to do is take care of anything an elderly, recent paraplegic needs 24/7 (with a little time off as needed to run some personal errands). Living the dream, right?

  5. #25
    Senior Member pfcs49's Avatar
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    Quote Originally Posted by liveinaide View Post
    I don't think that his insurance covers more in patient unfortunately.

    And for LaMemChose and Smashms up there, any time you want my job, just send me a private message. You would obviously be so good at it, I'd let you take it in a heartbeat!

    You'll get $600 a week, room and board and all you've got to do is take care of anything an elderly, recent paraplegic needs 24/7 (with a little time off as needed to run some personal errands). Living the dream, right?
    Sorry that you're feeling attacked-remember, we're on the internet. And some of the criticisms have some validity. I don't doubt your sincerity or commitment to your charge.

    However, to some extent the behavior has a codependent element to it. As a recovering addict/alcoholic (31yrs), I know about that stuff a little. In a way, your behavior is hurting him, just as the well meaning parent or spouse of an alcoholic hurts him by enabling his behavior and rescues him from the consequences of that behavior. It is a very difficult choice to make, to watch somebody make bad choices when you know what would be right for them (or maybe you don't realize his real potential in spite of how he currently presents?).
    I PM'd you an invitation to him and his spouse to come down on a weekend and spend a day with me and my wife (I'm 67yo T12, 19yrs). You are welcome to tag along provided his wife is present. We would spend the day getting to know one another, telling our stories, making a meal(s?), seeing how we solved most problems of life in a chair, talking candidly about our lives after the loss, together, and sharing our experience, strength and hope.

    I'd wager I'd find something more than paralysis that I had in common with your elderly recent paraplegic!
    Who knows, it might even be fun or the start of something ongoing. Being one on one with someone who is paddling a nearly identical boat might spark possibility in his mind.
    And, when you're standing in possibility, anything is possible!
    What's the worst thing that could happen?

    EDIT: I realized that as much as you might want to come with them, this should be a private, couple to couple deal. It needs to be a safe place where they can open up and take risks with two strangers who are in a very similar situation to theirs, and explore whatever topics might come up for them. You only need to get them into a vehicle that can make it here (about an hour's drive).
    Once they're here, we will handle everything, even transfers. Thanks.
    Last edited by pfcs49; 06-20-2014 at 03:12 PM. Reason: afterthought

  6. #26
    I'm a quad so I'll not be doing your work. I hire individuals to assist me with what I cannot physically do.

    I assure you those I have hired in the past and currently utilize have better, more empathetic, more professional attitudes than what you have demonstrated on this board. Attitudes of disdain and resentment can be sensed a mile off and yours are evident here.

    You have it better than you know as you are currently healthy and are not SCId. Your have free rent and utilities in one of the most expensive cities in the US, quite probably have free food and are earning approximately $2,400/mo. just "hanging around" and "babysitting" an adult. You'll have a hard time finding such pay and conditions again for minimal education and skill.

    If working for this man is not your dream job, go to school and earn an education to assist in meeting your personal goals and expectations.

  7. #27
    pfcs49, thank you so much for your kind offers. I'm not sure that this person is ready to accept his handicap enough to take advantage of it how ever. At this stage, I'm afraid to bring it up. He and his wife are completely in denial/bargaining mode at this time. They truly believe a miracle will soon cure him.

    So LaMemChose, let me try to follow you. You have never done this type of work. At this time, you are unable to, however I have a suspicion that even if that were to change you would still not do it. And if earlier in your adult life you were able bodied you also never considered doing it. But you are darn certain that you could do it a lot better than me. Ok, I get that. Thank you. How often on the average do aides last with you? For example, how many have you employed in the past three years?

  8. #28
    I have always been disabled. Always.

    In my previous career, my body never allowed for me to work as a PA. However, I did work many would never have chosen. I worked any shift asked, asked for additional work, and when at work, always looked for opportunities to learn more and work more. "It's not my job!" was never in my vocabulary. I was paid at the poverty level initially, but knew I would earn more with education and experience. I was a woman who worked in an all male field and also had a very obvious physical disability even pre-SCI. I did not let my gender or my disability stop me from learning and earning. Given experience, strong work ethic, education and a natural curiosity, I earned more and more over the years.

    Attitude was and is everything. I was not and am not owed anything. There is nothing I saw or see as beneath me. Hard work is its own reward and every job worked, no matter how low the pay or how tedious or inconvenient in hours was always a stepping stone to my next opportunity. It can be the same for you.

    You asked about PAs I have hired. Those who assist and have assisted me stay for years unless I moved to a different city or they married and moved or they became pregnant or they had to care for family members (typically elderly parents).

    Caveat: There are very bad PAs. There are those who steal and if so inclined do so early in hire. That NEVER works.

    In the best situations, a care provider is a partner in optimizing function and self-care. A good client/PA relationship is an actual partnership, a two way street. The PA does hard work for good pay, is appreciated, told thank you for a job well done, is flexible within reason with scheduling and requests as am I. A good PA gets to know my family, friends and pets over time as I get to know hers, too. A good PA cheers my successes as I cheer hers.

    I don't have a live in caregiver. However, I was injured in '93 and live alone these days with minimal assistance. I learned how to care for myself to the extent I am able very early on. I hire what I cannot do for myself.

    This is not an attack. It really seems working as a PA is not a good fit for you. You have expressed resentment and disdain for the man for whom you work. You have likened your job as akin to slavery while also saying you are only required to "babysit" and "hang around." You know this is not what you want to do forever.

    Why not look into legitimate, online degree programs and begin pursuing additional education to get you where you want to be? In the interim, you might also work to tweak your attitude. Look at everything you do as a stepping stone to your next position, to what you will ultimately do. Look at what you do as saving you loads of money. No rent! No utilities! Minimal groceries to buy! A chance to save money! You are in a city with infinite possibilities. Request a night off and hit a play you are dying to see. Make dinner reservations and treat yourself to a world class meal. Sign up for courses to get you where you want to be in a career.

    Even when you work a job and it's a bad fit, you are learning. It teaches you what you don't want to do and that is an important lesson. You can also learn gratitude in such times. You can be grateful for the experience, for learning how good you have it as a strong, healthy mother of three children. The worst times in life can teach us gratitude if we are open to it.

    You have more opportunity than you realize. Seize it.

  9. #29
    LaMemChose, I'm not sure how familiar you are with today's job market. Have you applied for a job since 2008? There are a huge number of recent college graduates, as well as older highly skilled people such as myself, who are accepting jobs which pay in the $10 per hour range because there is nothing else. Millions more just have stopped working or attempting to work due to this situation.

    I think you'll find very few people who have been hired anywhere doing anything in past six years who will say "I've got a great job. I really like this." Everyone, or at least about 90%, are getting jobs they are unhappy with or are not working and just living off their parents or spouse.

  10. #30
    Senior Member pfcs49's Avatar
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    Quote Originally Posted by liveinaide View Post
    pfcs49, thank you so much for your kind offers. I'm not sure that this person is ready to accept his handicap enough to take advantage of it how ever. At this stage, I'm afraid to bring it up. He and his wife are completely in denial/bargaining mode at this time. They truly believe a miracle will soon cure him.

    So LaMemChose, let me try to follow you. You have never done this type of work. At this time, you are unable to, however I have a suspicion that even if that were to change you would still not do it. And if earlier in your adult life you were able bodied you also never considered doing it. But you are darn certain that you could do it a lot better than me. Ok, I get that. Thank you. How often on the average do aides last with you? For example, how many have you employed in the past three years?
    And you choose to enable them to stay stuck?? If you don't give them the chance, they'll never get better.
    GET OUT OF THEIR WAY-YOU AREN'T THEIR PARENT!!! If you were open to it, you might see your co-dependence issues. What would happen if they saw the rose, much less smelled them.

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