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Thread: In need of life advice

  1. #11
    Member Califanna's Avatar
    Join Date
    Mar 2014
    Jacksonville, Florida
    I was wondering if you have the funds to pay direct or are you reliant on the State in providing the funds for a caregiver. I know that makes a big difference when you are trying to hire caregivers.

    My friend is dealing with a similar situation right now because the State will only give her 31 hours of caregiving and she must accept the providers given to her by the company that has a contract with the State. For the other hours she requires during the week, she hires people from and pays for them herself. The only other option she has is to go into a nursing home situation to get round the clock care and she wants to avoid that scenario.

    Have you considered moving in with someone who is also disabled and share caregivers? Because then the caregiver will earn more money because they are caring for two people versus just one. That is usually a good enough reason for them to make the house call everyday. It is always about the bottom line for most caregivers.

  2. #12
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Windsor ON Canada
    It's too bad there are no assisted living places throughout the US (I'm in Canada). There's one across the street from me .. unfortunately it's filled with the elderly but I've seen two young guys there. $3900 per month and all meals paid plus care and clean. It's a five floor multi-floor unit dwelling - right on the water. Quite nice with a nature trail and close to drug store, grocery, hair and other shops.

    Also one in a poorer area of Windsor staffed 24/7. A lot of young and old - a mix - all disabled.

    Another place is in London, Ontario called Cheshire Homes and it is staffed with attendants who only come when you call them - 24/7.

    They aren't 'nursing homes' per se, but apartments where care is provided when you request it.

    If someone would invest, I suppose a subdivision could have the same idea.

    I'll require these services some day (probably sooner than later) so I've been thinking along these lines as well.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  3. #13
    Senior Member Vintage's Avatar
    Join Date
    Nov 2016
    Texas USA, female ************** T9 incomplete
    Hi DA6righthand. After all those good ideas and possiblities, I will still offer you my perspective. I was in the third semester of my Masters when I got hit by a car. I'd wanted to go right back to college and finish it, but instead I landed in nursing homes. We'd be hard-pressed to prove whether you want away from your Mother worse than I wanted away from those nursing homes. I didn't get to go back to college, but I did get to go home to my own house. I've been here a year and love it. I haven't given up on finishing a Masters...though maybe I'll change to a different Masters. Where we differ greatly is our level of injury. I'm T9 incomplete. You definitely need more "hours" than I do. Even so, are there government subsidized apartments that you could apply for? I would choose independent living over getting the PHD. It would be a great loss. And if you have 'funding', that would likely be lost...and might never be regained. You might even be 'on the hook' to have to pay back part of what they have spent on you. But do whatever it takes to "have a life" my opinion...even if it means not finishing your PHD.
    Female, T9 incomplete

  4. #14
    Senior Member
    Join Date
    Aug 2004
    So. California
    It appears to me that you are qualified for a well paying job? Maybe put your PhD on hold, get a good job that pays well and pay a care giver what he/she is worth to you. I truly believe that, in the care giving world, you get what you pay for. i was my son's full time caregiver for over 3 years. It takes its toll not only on your relationship, but also physically. My back will never be what it was. Doesn't your mother know anyone: student nurse, friend of a friend, etc. who would like to make the extra money? When you find the right person, offer them additional $$$ (under the table). I wish you the best of luck! Bowel program blues and caregiver issues are a nightmare with a sci.

  5. #15
    If you are funded through a Medicaid/Medicare waiver program, please think twice about paying your PCA extra money. In CA, with the IHSS program, that is strictly prohibited, and if discovered, can result in your loss of IHSS services. You can provide additional compensation in other ways though; such as free rent, meals, paid transportation, etc. etc.


  6. #16
    Quote Originally Posted by lynnifer View Post
    It's too bad there are no assisted living places throughout the US (I'm in Canada). There's one across the street from me .. unfortunately it's filled with the elderly but I've seen two young guys there. $3900 per month and all meals paid plus care and clean.
    These types of places do exist in the US, if you can afford them. Can provide names of a few in Wa. and one in Az if interested.
    "Never turn your back on fear. It should always be in front of you, like a thing that might have to be killed." - Hunter Thompson
    T5/6 complete

  7. #17
    I am having the same trouble with the aide's that come to take care of my father who is a paraplegic. We have one that doesnt show up for a week at a time, then she will claim she came and no one was home. My dad rarely leaves the house and if he has an appt we always tell the agency. I used to be a independant provider with the state of ohio and I was paid very well. I would never have treated my clients this way. I took care of a man with MS for 10 yrs until he had to go into a nursing home. Good luck to you and yeah,, I agree-take care of your own health care. Get your own place. Good luck to you.

  8. #18
    I know ohio state and wright state have a huge disabled community, I realize your in cinci but would be worth a road trip to a support group meeting in those area and bounce ideas off other quads.
    another thought, how are your transfers? if not great consider an overhead lift with 4 way pad you could use yourself.
    lastly, u really don't know what your capable of until you really are in your own place and forced to figure things out. may surprise yourself.
    best of luck rep
    c4/5 inc funtioning c6. 28 yrs post.
    sponsored handcycle racer

  9. #19
    Junior Member
    Join Date
    Sep 2009
    Washington State
    I am in the same boat with my daughter as you are with your mother. (T-6 9/2006 - 16) It's not easy for either one of you, probably harder for you. My daughter lives alone but due to a recent surgery she is totally dependent on me and not happy. From my point of view no one can take as good of care of her as me, but if she is able to find some one good I am willing to let go. I would suggest a college student who is willing to learn and can work with you around their schedule a nursing, OT or PT student would be ideal. They are eager to learn and would be happy to make a little extra money. Perhaps you can have more than one so you will always have a back up and line someone new up before one moves on. Keep moving forward, this dilemma will always be part of your life to deal with. The quality of health care and health care helpers is very poor, at least you are in a larger area and do have more choices, than us in a small town. Having your mother around for now is not a bad thing, she won't be around forever and it's good that you are planning your own future. Be proud of you accomplishments, it's and uphill battle not a block wall.

  10. #20
    Senior Member
    Join Date
    May 2010
    Chesapeake, VA
    I do not want to discourage you but Ihave looked for a PCA for Ryan for years. They are not allowed to do bowel programs per regulation (have to be a RN or a parent to administer a bullet). Reliability and willingness to work have been issues. I am willing to treat someone very well but need some one to be here to get him up, to the shower, and to the van to go to school. He is able to dress and feed himself but cannot cook or prepare more than a sandwich. He goes to school three days a week and PT/OT at least one a week. Driving is important and my experience is that no one we have tried has been serious about their own safety (seat belts-basic) so why would I trust them with his safety?

    I feel in my heart that there is some one out there who will be right but I have not found them. I am not asking for bowel programs, Just pushing to the shower and back and to the van and back with driving him to school or therapy, maybe a grilled cheese or some scrambled eggs. I do not think this is too much to ask but I guess it is.--eak
    Elizabeth A. Kephart, PHR
    mom/caregiver to Ryan-age 21
    Incomplete C-2 with TBI since 3/09

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