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Thread: Do You Plan Ahead?

  1. #1

    Do You Plan Ahead?

    Since my DH and myself are the ones that the son lives with, and I am his caregiver we have asked ourselves this question many times? What do we do when/if one of us is gone?
    We are not young kids, DH is 70 and I am 66, both have typical old age problems creeping in so we think about this a lot.
    At least our son agrees that his sisters, he has 2, would never be allowed to be his caregivers!! That he is adamant about. He will willingly go into a nursing/rehab facility as long as it is near one of the sisters, so he can have contact with some member of the family.
    He is fortunate in that he does have some investments that should take care of his needs and he not be a burden to his sisters.
    I guess I am just wondering if anyone thinks this far ahead.

    He has mainly chosen to go to California with his older sister, the facilities are more available, and the weather is a bit more to his liking, the other sister lives in Minneapolis, and snow he has lived with in his condition and it was not a happy time for him.

    I know most of you probably have private care people, but still you must have to think of the future.

  2. #2
    It is not too late for your son to learn to be more independent. Can he get some outpatient occupational therapy so he can learn to do things for himself? At his level, there should be a lot he can do independent with work.

    Since he has investments, I assume he is not getting Medicaid or SSI. Where does he get his income? How much will he have to spend on PCA care a month? Rent? Other expenses? Have you looked into a special needs trust?

    If he is not eligible for SSI or Medicaid, he would have to private pay for nursing home care until he runs completely out of money and can then apply for Medicaid. This starts at about $4000/month and goes up from there, and even at those prices, the care sucks. There is no polite way to say it otherwise. Has he ever been in one? If he can manage $4000/month private pay for a nursing home, then he can afford attendant care at home, either living with family or his own apt., and be in control of his own life. I would encourage him to get in contact with his local ILC and discuss options for the area in which he lives or plans to live.


  3. #3
    Well he is independant as soon as he is put into his wheelchair, but he cannot make his meals or such.
    As for the finances, he is on Medicare, and he gets a disability social security. He has a monthly income from his lawsuit, but not the big dollars others may have been given, but for as long as he lives..
    The problem is he needs to have care getting into, and out of bed, getting dressed, and his urine and bowel programs.
    He may be incomplete, but he lost the movement of his hands, and all areas below his shoulders.
    California has some great places specifically for the disabled, the DD has this info at her beck and call, so she would know of places he can be happy at. Not necessarily a nursing home.
    This is a man of 43 years of age, so he is pretty set in some of his ways.

  4. #4
    If I were him, the nursing home would be Plan Q. It wouldn't happen until all money and other options were exhausted. I went through it with my mom. She had no money and no drive, but we were at Plan G before we got to the nursing home. She was 48 when she had her stroke.

    Plenty of people live alone that can't transfer in and out of bed. People figure out other bowel/bladder solutions also. I know nothing about your son, but I was injured at age 40, am nearly 48 now. The only "way" I'm stuck in is the way that says nursing home dead last, and not until I'm out of money! (Trust me, I got no settlement or any sort of dollars from my injury. I'm middle class because my husband and I worked and saved all our lives.)

    I hope he'll start thinking about this. It's great that it's important in your mind. Maybe it will transmit to him. If a nursing home is something he looks forward to, dandy. If it's not, he should start working with you on ways to forestall it. He's very fortunate to have family that cares what happens to him. Many of us have nobody.

  5. #5
    As always, Betheny is exactly right. I couldn't have said it better myself.

    One other thought. Would it be possible for him to go to a rehab facility to learn how to become more independent now? I'm thinking that this might be a good idea for two reasons. First, it will teach him how to optimize his capabilities as much as possible immediately. Second, it will help him learn how to not depend on you as much for his care. Right now you are always around. Maybe making a transition in a new place now will prepare him better for the future.

  6. #6
    I live in CA. I can tell you there are no good places for people with SCI in nursing homes, and assisted living places will not provide the level of care he needs. A nursing home will not do intermittent cath...they will put a foley in him. Medicare will not pay for nursing home care for someone with a SCI.

    If he has wrist extension, regardless of the loss of use of fingers, he could learn to cath himself and even do most of his own bowel care. He could also become more independent in transfers and bed mobility. Many of my clients with C6 injuries also do some cooking...using a microwave and special equipment makes it much easier.


  7. #7
    Senior Member
    Join Date
    Sep 2005
    In your nightmares
    I concur. The people at the nursing home were very nice to me but the care was very subpar. If the state inspectors would have came towards the end of my stay, I would have given a more honest review. I practically lied just so that I wouldn't be on anyone's bad side. I mentioned something about the food not to my liking and practically the whole facility knew about it. But oh well got to be around young aides.

    Hopefully in the next couple of years I can have my own place and not have to worry about what you mentioned. Although I can receive care for free. But I just wish to let my folks have some peace and quiet and not be in the same household. I don't even know if I am making sense. Just babbling here.

  8. #8
    Senior Member alan's Avatar
    Join Date
    Jul 2001
    Baltimore, MD
    I don't have wrist extension as C-5, plus I have short arms.

    Proofread carefully to see if you any words out.

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