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  1. #1

    My SO went to assisted living

    First, for anyone who doesn't know, I have the SCI, my SO was injured with me, he's blind and has a significant TBI. I am his primary caregiver. Currently I'm nursing another fracture and a nasty little pressure sore on my backside that has me on complete bedrest for the next couple of weeks.

    When I went to the ER, his guardian came by to check on him and realized that he hadn't bathed or brushed his teeth in a long time (it's a continual issue due to his head injury). Since I am unable to properly care for him right now, his guardian decided to place him in an assisted living facility for a while. I didn't argue. His bag was packed in 15 minutes.

    He doesn't try to help out at home or to improve his self-care skills. He was here with me for 3 days after I was hurt. Even though I explained how important it was that I stayed on my side and how dangerous a pressure sore could be, he still nagged until I got up to make dinner. There's no reason why he can't be more independent according to his OT.

    I'm sad and embarrassed to say, I'm relieved that he's gone right now and I'm not eager to heal because he'll come back home and we'll end up right back where we were when I got hurt.

    How do you set those boundaries so that he's as independent as he can be? At what point is it ok to say "I can't do this any more?" If I don't care for him, no one else will. He'll have to go to a facility. If I do continue to care for him, I sacrifice my own health and well-being. What to do?
    My blog: Living Life at Butt Level

    Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

    "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

    Dawna Markova Author of Open Mind.

  2. #2
    Senior Member lynnifer's Avatar
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    Put #1 first <--- that would be you.
    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. #3
    JenJen--take care of yourself! It's tough to be in your situation. You're not doing anyone any favors by sacrificing your health.
    Daniel

  4. #4
    Can't say a thing you don't know already, but if you get severely ill, he's not visiting AL, he's living there. Take care of you.

  5. #5
    JenJen, here's my perspective, for what it's worth; our son has a TBI along with his SCI, too. He has pretty significant cognitive deficits in what they call 'executive functioning', ie, being able to reason from point A to B to C, along with a recent memory deficit.

    Re the comment that the OT made about him being 'able' to do self-care; yes, that may be true from an SCI perspective, but from a TBI perspective, it just doesn't work that way. It's so hard for us to understand how someone can 'forget' to brush their teeth or bathe, but it's very common with a TBI. When he asks you to get up and make dinner or whatever, it could very well be that he just can't 'connect' that you have physical issues, too - or has forgotten that you do when he asks. TBI, like all mental issues, is still very much in the 'woo-woo' mystery land. We can't see the brain function, we're just beginning to have glimpses of how it functions and what happens when it dysfunctions.

    With your situation, I'm not sure it's healthy for either of you for you to be his primary caregiver. If you can get PCA help, or family help, or whatever, that would be the best for both of you.

    I'd also recommend he be seen by a neuropsychologist, and get a cognitive evaluation; it will help you to understand where his strengths and weaknesses are; also some intensive cognitive therapy will help give you both tools you can use to help him with his daily functions.

    This must leave you feeling so helpless and hopeless; I understand those feelings! The good news is that, after almost 9 years, my son's cognitive deficits just seem to be clearing up on their own. He's much more able to function, reason, and remember things. I can remember a time when he couldn't remember something someone had said 5 minutes previously, so this is huge for him! The brain does heal, it just takes time.

    I would be happy to give you the TBI resources I've found helpful, just let me know!
    _____________

  6. #6
    Senior Member Foolish Old's Avatar
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    JenJen,

    I have no advice or counsel to give. But prior to this development, I have thought how tough your situation must be to handle. I hope that the anger, guilt and sorrow that I imagine you feel isn't overwhelming.

    Once you've done your best, you can do mo more.

    You have my sincerest wishes for better days to come soon.
    Foolish

    "We have met the enemy and he is us."-POGO.

    "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

    "Dream big, you might never wake up!"- Snoop Dogg

  7. #7
    Thanks all for the support. I don't know what happens next.

    Marmalady, he has had multiple neuropsych evals and yes the info is mixed. His memory is good but he has trouble with new learning. His IQ is off the charts. Hygiene issues stem from his "failure to initiate." He has not had enough cognative retraining but I've been unable to fund more yet.

    Adovcating for him is a full-time job. I contacted his sister via email and explained that I was too ill to care for him so he was in a care home and asked that they get involved in overseeing the conservator They have not responded. His behavior has alienated his family and friends as they see it as willfull no matter how often I try to explain TBI. Why can't they get it? His behavior impacts PCAs too and although I understand it, I too find it tiresome when I'm stressed. The injury has created mental illness; OCD, bi-polar, psychosis, delusions of grandeur... he goes on missions for God and travels between worlds though much of this has resolved. He's an expert on everything.

    Sometimes I resent that he's "just" blind with a TBI, his health is stable where mine is not. No matter how sick I am, I cannot rest because he has needs. He can do them, he won't. On my way to the ER this last time, I spent the entire ride in the ambulance activating my back-up care plan for him. I can't rest or focus on me in the hospital because he can't take care of himself.

    Some of this is willfull because when he absolutely must care for himself he does. I realize that his TBI impacts his decision making but how long can I do this? And if I don't, who will? I just don't know how to resolve this and it haunts me. Then I see other people at the Center for the Blind with SMI, blindness and true physical impairments yet they live on their own successfully. I know it's unfair to compare but I do see them as benchmarks for his progress. I found a TBI support group and that's been helpful.

    For as cruel as our SCIs are, I wouldn't trade my SCI for physical health and a TBI. I'm just venting now so I'll stop. Thanks.
    My blog: Living Life at Butt Level

    Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

    "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

    Dawna Markova Author of Open Mind.

  8. #8
    Hang in there. Your story is unbelievable. I don't know how you do it. You are very strong! Keep fighting.

  9. #9
    Senior Member jccarolina's Avatar
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    Jen,
    I know what it like to be a para and a caregiver at the same time and it is so stressful allot of times. My hubby isn't as severe as yours, but he too can do allot more than he does now also.
    In this situation you need to put yourself first. If your health completely deteriorates then someone will be caring for you and your SO in a facility and we don't want that.

    Is it possible to get a live in CNA or home care assistant to live with you guys? You know the kind that you can give a lower pay to because your providing her room and board?

    I think that would be the best course for if you wanted him to be home with you. You can't do this alone being a para and having no other assistance other than an occasional pop-in guardian.
    If the Army & the Navy ever look on heavens scenes, they will see the streets are guarded by United States Marines!


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  10. #10
    JenJen, every word you've said about the TBI and how it impacts both you and him and his family, I've heard before; I so know how you feel! We've been there with losing PCAs because of the TBI behavior. It's so frustrating you just want to scream. Gee - they -look- normal; why can't they -act- normal?

    Does your state have any TBI resources? How is your insurance situation? My son is on Medicare and Medicaid, they funded everything for cognitive rehab.

    You need resources, you need rest, and most of all you need practical help. Does your county have any programs? Rehab social workers who can help you?

    I know, all this is probably asked and answered. Just wish I could do something other than say, I've been there, for you.
    _____________

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