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  1. #1
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    For loved ones/caregivers

    Hi, so. I don't really know how to start this.

    I'm married to someone with chronic, life-threatening illness. I've seen more ERs than I can count at this point, seen plenty of rotations of treatment teams, whatever, in the six years we've been together. She's doing what she's able to do for her condition; that's her business.

    I am in the business of caring. Like, in the healing professions. It is my job to comfort people and help them get better, or it will be when I've finished training. And I watched this before: my father is a doctor, and my mother is chronically ill, within his specialty even, and I watched it eat him up from the inside out for years that he is a physician and the one person he wasn't able to help heal was the woman he loved most. I watched the resentment between them grow, and I watched it hollow them out.



    I don't want to be that. I don't want to be that healer who destroys herself trying to rescue someone who probably can't be cured. I just want my marriage to work, and I'm devoted to this woman and doing my best to accept that I can't fix it, and in the meantime living with this is wrecking me. She has a bad patch and I don't get to sleep and it's making messes all over the place. I don't have any illusions about how it ends: eventually, barring an accident, I'll be a widow. I've accepted that. I want things to be okay with us until then.

    I guess I'm asking--does anyone have useful advice? Something that worked for them? Some resource I don't know about?
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  2. #2
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    Re: For loved ones/caregivers

    Quote Originally Posted by Valentine View Post
    I guess I'm asking--does anyone have useful advice? Something that worked for them? Some resource I don't know about?
    The best advice I know of is to find some sort of support group for yourself. (And, if it's relevant, respite care: you need to have time when you can focus on being you, as well as you-in-relation-to-her.)

    Two of my trad-mates have been involved with running studies about how caretaking support (one on one meetings with a licensed therapist, and group work) support caretakers of people with Alzheimer's or dementia: the bits and pieces I've heard from them both are pretty compelling, even (and perhaps especially) for the people who (like you) have lots of experience in a healing profession, are doing all the right things, etc.

    Online helps some but in person is apparently way better if it's at all feasible. (Her medical care, or the patient care coordinator or whoever at her health provider, probably would have some ideas, if you don't have other ways to track something down.)
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  3. #3
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    Re: For loved ones/caregivers

    Quote Originally Posted by Valentine View Post
    I don't have any illusions about how it ends: eventually, barring an accident, I'll be a widow. I've accepted that. I want things to be okay with us until then.

    I guess I'm asking--does anyone have useful advice? Something that worked for them? Some resource I don't know about?
    My wife doesn't have any specifically terminal illness (other than in the sense that technically speaking we all do), but she does have multiple chronic illnesses. She was the youngest on the cardiac ward when her two sents and angioplasty were done (39 yrs old). She has sleep apnea, diabetes (not insulin dependent thankfully), sciatica, microvascular disease, cardiovascular disease, osteoarthritis, a unicorn horn shaped bone spur on her kneecap (okay that one can be fixed if it gets big enough), PTSD, brittle bones, anemia, GERD, hiatal hernia...you get the picture. All of this and she turned 44 this year. She's a disabled vet - so thankfully we get all her care for free from the VA. However, it's the VA - and fighting and legal paperwork so I could care for her properly when they don't want to acknowledge my existence has not made it an easier task.

    It's been especially hard this last weekend in the USofA because fireworks set of flashbacks and it spirals from there.

    I wish I had more resources I could offer. All I can suggest has already been echoed...the value of a RL support group is inestimable. However, know that in the lack of, and in addition to, I'm always around and willing to be a sounding board or anything else - help in what ways I can. I too grew up in the medical field - so you don't have to explain much to me.
    You can also find my ramblings at my blog although I'm not the best at regular updates. I'm working on fixing that. Or look for me on FB here or Google+ here.

  4. #4
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    Re: For loved ones/caregivers

    Quote Originally Posted by Valentine View Post
    A real life support group for you would be a big help. If that's not available, maybe an internet group?

    Respite care would be an even bigger help. Does your wife have any friends that are willing to come over and sit with her for a few hours or maybe take her to lunch, so that you may run a few errands or just recharge?

    I'm caring for my MIL and I know where you're coming from. If you need to blow off some steam, I understand.

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