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Thread: Life change needed

  1. #1

    Life change needed

    Hi I am a C4/5 quadriplegic. I used to think I could do it on my own, living in my own house, with a caregiver three times a day. That's not working out so well. My family worries about me being here by myself. My caregiver lives across the street and of course 911 is on average five minutes away.Theoretically no big deal there, well I have become quite tired of it. I own a very nice double wide wheelchair equipped home and I feel it should go to somebody else. It was once my, my wife, and our son's home.

    Now to the point of my post I do not know where on here to ask the question if anyone knows of any type of housing around the Portland Metro area. I have tried Quad inc. but they have quite a waiting list and I really don't know where to start outside of that.
    Would I be classified long-term care, special needs care, or nursing home care?
    If anyone has any ideas please post them I feel the strain on my family and my own mental well-being getting worse every day.
    Thanks everyone,
    Adam

  2. #2
    Senior Member tooley's Avatar
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    I won't pretend to know you or the disability you live with. But I think you are better off where you are. Not to trivialize your feelings, and I'm sure you've heard it all before - but you have what most people in your situation dream of. I guess the grass is always greener on the other side.

    I'll start to explain my thoughts on this, or at least try to give you something to think about.

    I would imagine, without knowing what happened to the relationship with your family, that there are a lot of memories associated with them in the home you now occupy alone. That's tough for anyone. My father, at 56 years of age was forced to place my mother in a long-term care facility while she battled Parkinsons. Coming home to that house every night, empty and dark, crushed him. I honestly thought he would not pull out of it. But thank god for the friends he has, they convinced him to get on with life. There was no fixing his wife. She was gone. Luckily he's not a bad-looking man who makes a good deal of money. He soon was dating and lived common-law in that house with his new lady until they built their dream house and moved. By then he was over the fact that his first love had gone away.

    I realize all that is probably not going to happen to you, seeing as you're looking into group homes or gov't-subsidized housing. Have you visited any of those places? While I'm sure you wouldn't be alone, I'd bet my wheelchair you'd come to miss the setting you now reside in. Honestly, you have a much better shot at life with everything you have in front of you now.

    You just need some new hobbies. I know that sounds ridiculous, as a C4 what hobbies can you have. Well it's about the only thing any of us have in this life, short of relationships. Everything is just a distraction as we all circle the sun. I don't know what else to tell you. The strain on your family you feel can be eased by showing them you are making an effort. We live in a very-connected society. There's no reason they have to worry about you if you keep in contact. A quick e-mail/text message (which seems you are capable of) is all it takes. They don't have to know exactly what you're going through, just that you keep trying to go through it.

    There's a guy on here, rybread, who went from living as you do now to an assisted-living facility. He viewed it as an adventure at first but soon figured out he had it all before he let it slip away. Don't let that happen to you!

  3. #3
    Ditto the above! Any chance you are not getting out and about enough and sick of viewing your indoor surroundings? You are young enough to get out and socialize. I think you can make it happen if you re-work your daily schedule of care, etc.
    Hope you let us know what you think.

  4. #4
    Have you considered a live-in aide/companion? You have room and could provide free board in exchange for some help, companionship, and having someone there most of the time. That would ease your family's mind as well as yours.
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  5. #5
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    Quote Originally Posted by SCIfor55yrs. View Post
    Have you considered a live-in aide/companion? You have room and could provide free board in exchange for some help, companionship, and someone there most of the time. Shat would ease your family's mind as well as yours.
    I so agree with getting a roommate! Maybe a nursing student. Discounted/free rent for assistance? there is no argument, being in a wheelchair is a bitch. However, please do all the research and really think twice about leaving your home!!

  6. #6
    Senior Member grommet's Avatar
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    I really agree with Tooley. I think he said it all. My best to you :-)

  7. #7
    Oregon Health Sciences University is right in Portland, and could be a rich source of potential PCA help, both live-in and live out.

    I would strongly encourage you to avoid going into an institutional setting. The better places are very expensive, and insurance generally does not cover assisted living, or even SNF care if your needs are not what Medicare considers skilled nursing. You may have to private pay, which would mean running through all your own resources until you have depleted them enough to qualify for Medicaid. Once that happens, getting out of institutional living becomes so difficult because you can't have more than $2000 in assets, so getting enough for a down payment or even first/last for rent is pretty much impossible. In addition, you will have little control over your life or care in an institutional setting. Sad to say, you get little real "nursing" care in a nursing home!!

    (KLD)

  8. #8
    Quote Originally Posted by alittleslower View Post
    Hi I am a C4/5 quadriplegic. I used to think I could do it on my own, living in my own house, with a caregiver three times a day. That's not working out so well. My family worries about me being here by myself. My caregiver lives across the street and of course 911 is on average five minutes away.Theoretically no big deal there, well I have become quite tired of it. I own a very nice double wide wheelchair equipped home and I feel it should go to somebody else. It was once my, my wife, and our son's home.

    Now to the point of my post I do not know where on here to ask the question if anyone knows of any type of housing around the Portland Metro area. I have tried Quad inc. but they have quite a waiting list and I really don't know where to start outside of that.
    Would I be classified long-term care, special needs care, or nursing home care?
    If anyone has any ideas please post them I feel the strain on my family and my own mental well-being getting worse every day.
    Thanks everyone,
    Adam
    What is it exactly that is bothering you? So far everyone's just said don't go into an institution. But I don't think you quite explained exactly what your problem is, please do elaborate. Is it listening to your parents/family complained about you being alone? is it the fact that you are alone that's bothering you? Are things going wrong while nobody is there to help like getting AD, dropping the remote control and/or computer control,dropping your water etc etc? Are you sick of going to bed and getting up when The caregiver gets there the same time every night and every day?

  9. #9
    Thank you everyone for your suggestions, comments, and concerns. I do have that very nice, and recognize that. The post that I put up was purely driven out of frustration, and complete disbelief as to how money grubby family can get. I received my Social Security disability and a certain amount of money from the state to pay for my caregiver. Side note my caregiver is awesome she lives right across the street, but sometimes the caregiver/caregivey relationship gets tired for lack of better words.
    I let my nephew, his girlfriend, and my grand niecemove in. Family freakin family why do 20 somethings not get it. You cant not help me out with the occasional pillow move and live here rent free. Anyway drama blah That will work itself out in time.I guess what I was looking for was companionship with people in like situations. I had that thought the day I started the post, after that I recall the trip to a local super huge hardware store where I couldn't find anyone helpful to my cause. I've had an extensive background in all forms of construction and decided it's time for me to get a job. It will mean that I will lose some of my caregiver funding and I will have to turn around and pay that out of my wages. I at this point don't really care I'm still of people I'm just a people in a wheelchair. As the person above me wrote it is tough having as what I'll say is a "bedtime" caregiver availability, and I guess you guys just caught me in the draws of a pity party.
    Thank you all so much for being there for me.

  10. #10
    Senior Member lynnifer's Avatar
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    I've always wanted to see Oregon ... I'm moving in!!! LOL
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