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Productivity? What's that?
I've actually been fairly productive the last few days. If I'd been this productive two months ago, around the end of March, I'd have my FSA receipts all sorted, the Consonance concerts all up on the web, and be feeling a lot less panicked and harried and depressed.
There's a receipt that I know was on my desk, where I needed it. It's not there now. There's a phone call I should have made 12 hours ago; it's too late now.
As it is, I'm feeling frustrated, panicked, defeated, worthless, and hopeless. Also, paradoxically, bored and restless. I can't focus, can't concentrate, can't sit still, can't relax. Which is not helping.
Knowing that it's some combination of burnout and depression, and that depression lies, doesn't help either. Neither did taking a walk this afternoon, except maybe temporarily.
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The thing is, this isn't a sprint, it's a marathon. I say this with over twenty-five years of long-term-care nursing experience. Instead of planning for some time in the future when Colleen can do more for herself, which may or may not be realistic, it would be better to plan for what things are like right now. Find a way to give yourself the rest you need so you can keep doing what you've been doing without crumpling from exhaustion or having a mini-meltdown. If that means hiring help to care for her a couple hours a day or arrange for a friend to be with her so you can escape for a while from your responsibilities then you need to do that. If Collen improves, then you can always spend that extra time together. My guess is that right now Colleen is getting mostly all of her needs met and you aren't. It's classic and completely understandable, and it's a recipe for total disaster.
When you do get some time for yourself, be sure not to squander that time on something that isn't going to give you a physical or emotional boost. Sleep, exercise, something that you enjoy is good. Maybe it could be as simple as an uninterrupted walk or an hour to play your guitar. It could mean going to a quiet place for a much needed nap in the middle of the day. If you listen to your body, it will tell you what it needs. Doing something that isn't self-care during that period like running an errand for Colleen, housework or paying bills isn't going to give you that feeling like you have taken care of you, and that's what is important. Urgent to-do items are crowding out the things that don't seem as urgent, but they may actually be essential for your well-being. You ignore them at your own risk.
I know, easier said than done, but your body and mind are like a checking account. If you start writing checks with no money in the account it gets ugly fast. Caregiving is like that checking account. Sometimes you have to stop long enough to make a deposit before you can make another withdrawal. You sound like you've been writing figurative hot checks ever since Collen came home. If you need a good reason to put yourself first, just think how bad things would get if you ended up sick or out of action. Trust me, protracted self-neglect can trigger just such a scenario.
I'm more worried about you than I am Colleen right now. Please take care.
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I've never been very good at organising my time; there's barely enough for work, care, housework, and errands.
I've never been good at simply "enjoying" anything -- I'm not sure I know how it's done. Maybe we could talk about that sometime; deep conversation is one of the very few things I know that I do enjoy.
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Problem is, I have to work, I've burned through a lot of vacation time, and a lot of money. I can leave Colleen with friends during the afternoon, and I do, but I'm working then. Weekends I mostly run errands, like shopping.
I'm trying to make time for a daily walk, but it's hard, because that's the thing that gets squeezed out when care, errands, or work runs overtime.
Things I enjoy... That's the hardest one, because I honestly don't know what, if anything, falls into that category. Most of the things I "enjoy" doing by myself put me in a focussed, trance-like state. Is that the same thing? I don't think so, but I've never learned to do anything else. There are a few things I can do with friends, but that raises a different set of problems.
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Yes, I know you have to work, and yes, I know that errands need to be done and I know that Colleen needs care. A lot of care. I was a nurse and a working single mother for nearly all of my adult life, I get all that. But I suspect that making time for yourself, actually blocking time every day to go into that focused trance-state is essential to your emotional and physical well-being. I also think a caregiver group would help you much more than you might think. Of course you aren't going to have the time for it, you have to make the time for it, or something comparable. If you don't take care of yourself and your health suffers, which it will eventually, if not already, then who is going to take care of either of you? Caregiver burn-out is real and it can destroy your health.
I'll put this as plainly as I can. You can't keep giving and giving and giving without taking something for yourself, and from your posts it seems that right now Colleen isn't well enough to support you in the ways she once did. The truth is, she may never be able to do that the way she once did. I hope that isn't the case, but if it is, you've got to find the support you need somewhere.
Friends, even wonderful friends can only do so much. At some point in our lives most of us have to reach out to strangers for help. It's not easy, and you know that. You've already taken the first step with your therapy sessions and they seem to be helping, but they aren't specific to your situation and your situation is what is dragging you down.
Think of a caregiver group as a support system to help you cope with the sudden avalanche of responsibilities that have fallen into your lap in the last year. Spending an hour or two a week with people who are struggling with all the same problems you have been struggling with solo for these many exhausting months might well restore you to what passes for sanity for you :) I honestly think you should try it before you dismiss it as worthless. Just meeting other folks out there in the same situation, and hearing how they cope might give you much needed perspective. Worst case scenario? If after a couple of sessions, you decide it isn't helping, you can walk away and try something else.
Callie knows you a heck of a lot better than I ever will, and she agrees with me. If you can't trust my judgment on this, maybe you can trust hers.
I don't think you have any idea how close to crashing and burning you seem to be to those of us outside looking in, or how much you need help coping.
"Out of Cope" is a phrase my family uses when one of us is temporarily unable to function. It's an extreme expression coined by my daughter and is used as a plea for assistance from those of us with a bit of cope to spare. Your posts are screaming "Steve is out of cope!" more and more, especially since Colleen's last hospitalization, rehab and discharge. I wouldn't have made the suggestions if
A. I wasn't honestly concerned for your well being, and
B. I didn't know firsthand how well caregiver support groups can support an exhausted, overwhelmed caregiver. I used to refer burned out family members to them all the time, and I can honestly say I saw them save not just quality of life, but in a couple cases, life itself.
If you don't make time for yourself, fate has a way of doing it for you. I know this from excruciating personal experience. Trust me, you really want to do this yourself, because if fate does it for you, I'm pretty certain you aren't going to be happy with the results.
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So far the only caregiver support group I've seen at Kaiser seems from its description to be aimed at caregivers of Alzheimer's patients; it's possible that there's another one, or that the group is less specific than its description. I also didn't look past the description to find out the time -- a lot of groups aimed at old people are during the work day.
The other groups I've found in my area, via Google Maps, seem to be either oriented toward specific diseases, or associated with churches. I'll admit I haven't gone through all 1500+ links, though, only the most relevant hundred or so.
I will ask my therapist on Wednesday; perhaps there is something. But so far the help I've gotten via Kaiser has been minimal, and I got nothing at all from the social worker at the nursing home. Or from any social worker I've ever met, for that matter. Maybe I just don't know what to ask for -- there doesn't seem to be a user's manual for these people.
I am becoming cynical and depressed; I should stop now. As I said, I'll try on Wednesday.
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It may be nourishing something in my brain, but I can't help thinking that this "joy" or "happiness" that people talk about must be something else entirely.
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Yeah, having worked in health care my entire adult life I totally get the lack of support for patients and their caregivers. It's criminal and it has always infuriated me, which is why I gravitated to a job where I was an advocate for those poor souls who were falling through the cracks. Medical care and support should be a right, not a godamned luxury only the uber-wealthy can access. It was bad 20 years ago and is now pathological in our crazy for-profit corporate-run world. Our health care system is broken and the idea that everyone has to be their own support system is utter bullshit. I'm sorry your health care providers and insurance plan benefits have failed you so miserably. There are good programs and services out there if you are willing to put in the time and effort to find them, but I understand your frustration.
If getting help from your insurance plan or a social worker seems impossible, why don't you reach out to your own personal village of science fiction fandom? It is difficult to imagine there aren't more than a few local fans in nearly the same boat you and Colleen are in. Speaking from personal experience, Silicon valley fandom has always struck me as being incredibly supportive to anyone with physical handicaps. Why don't you ask Colleen to network a bit, she's good at that, and you aren't, and even if she can't drive, she can still use a phone. Maybe she and some other disabled fans and their partners could start up a fannish caregiver/disabled partner support group that could rotate weekly evening meetings from house to house? I like this idea because it might help you both, easing her sensation of isolation and frustration, giving her something to do besides feeling like a burden, and gathering like-minded people who really understand your lifestyle and challenges? The caregivers could share frustrations and tips on ways to make their lives a bit easier, and so could the partners who are disabled. A fannish support group would be ideal for your unique situation, and if you open it up for anyone in fandom who has a physical disability, or their caregiver/support person, you might be surprised at the response you get. Sometimes when we have no energy left to help ourselves, by helping others we can get the help we so desperately need.
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There may be something in Kaiser, that's as far as I know how to go on my own. We'll see what Colleen can come up with, if I can work myself up to asking.
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She will also be starting a local Ladies' Sewing Circle and Terrorist Society meeting Tuesday nights, so that'll be my night off. Plus any Wednesday I choose to take off rather than stay home and be sociable.
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Good suggestion, but a little problematic -- I've thought about this one. I can handle the "nourishing your brain" part of that, though if things like reading and blogging were really in that category I'd expect to see some effect from the amount of time I already devote to them. "Things that give you pleasure" is another matter -- I'm not sure I understand myself, or pleasure, well enough at this point to be able to make that list. Will try.