The Nexus of effects of multiple impairments
This is the first time I’ve written about my caregiver at length. I figure if she sees this, we’ll have (another) of the mild arguments we’ve been having lately.
We’ve been friends for a decade, she’s been my roomie and caregiver (unpaid 😦 ) since 2000. It ain’t cuz I’m cheap, it’s because in Colorado you basically have to be making 550 a month or less to get paid caregiving, and have a social worker and be on Medicaid
When she got off SSI and went to work, she had hideous asthma and smoked like a factory. She quit.
She began smoking again in 2006. She has severe asthma still, and the smoking makes it hard. She could potentially lose her job if she’s absent too much from this….She’s still on nighttime oxygen…All of this has been explained to her in words of one syllable both by her docs and me.
She’s got uncontrolled Type II Diabetes that hasn’t gotten too bad yet.
She’s been saying recently, not surprisingly, that she’s feeling stressed and overburdened. She admits, it’s not likely that she’ll quit smoking or get dilligent about her blood sugar, so, that means that her ability to *be* a caregiver will end sooner rather than later…Because of that stress, she supports a possible move back to Ohio, (Akron, Kent, Columbus) next May, if jobs can be found, because she knows that I have family there…Neither of us expects any of them to take over the unpaid cargiving gig at this juncture…they’d resent it. But as far as me going and socializing with them and having them take me off my caregiver’s hands for a weekend, she’s looking forward to that.
Yep, when I landed in the chair, she’s had to do more things for me (thankfully no ‘hygeine’ related stuff yet ewww.) It involves loading and unloading the manual chair more often, basically and pushing me places….
And, I can’t help it, I’m mad. On one level that’s ridiculous. She’s been a big player in making sure I get where I need to get and do what I need to do… I’m no paragon either, I have things that I could be handling better…but the *smoking part* is what peeves me the most…
That could be stopped.
I’ve seen the endgame of uncontrolled diabetes, I don’t want to see that again, but as a fellow food addict, I have just as much trouble getting out from behind the old tape that changing *that* is impossible.
I’ve also seen the endgame of what happens when somebody decides to ignore their own body.
Before I leave the planet, is it possible I can live with someone who can *take care of themselves* so that helping me isn’t some huge impossiblity…maybe not. Maybe that’s just not in my cards.
We’ve discussed just me going back, and her staying here…but neither of us can afford that, financially. Two apartments instead of one out here might help us lose *weight* (so we don’t keep sabotaging each other, laugh) She wants to move to an apartment with more amenities, and I want to move to a more accessible one, but rents just don’t allow that, and I cannot handle laundry or trash removal by myself anymore. Everything else, in good weather, I could handle alone…
I try to schedule things, to go off on my own and do my own stuff when she’s obviously ready for me not to be there, and she does the same for me.
It just isn’t quite enough…
Sudden shift in the PCA Paradigm
The roomate, stressed to an insane limit by the Denver blizzards this last winter (having to work ten and twelve hour shifts in an industry that’s transportation related)
….Took up smoking during those blizzards… after a ten year hiatus. They already have severe asthma. Roomate quit in July again….
The roomate has been the de facto PCA around imfunnytoo’s house for the last seven or so years….
A sudden, drastic reduction in their lung function means that the things that are beyond me, are now (mostly) beyond them as well…so I’m going to have to fork up for cleaning (which is fine)
and figure out a way to do laundry myself…(which due to layout of the place can prove a bit much.)
Could be temporary, could be permanent.
I’m in that place that a lot of people with impairments with jobs also find themselves…Income too high to get a paid pca, …
The roomate on oxygen 24/7 can still work, and still drive (yay.) But that’s about it.
Can’t move out of this place until 2008 in August…(for something smaller and slightly less expensive)
Not a sympathy grabber. I’m just trying to figure out
how to handle this…
Well, actually no. I’ll rant a minute.
Conservatives *want* us to work. They would rather not fork up for impairments if at all possible. (I mean good grief, they aren’t even really paying for what’s needed for the physical and mental struggles of the soldiers *they* sent to Iraq, )
so the rest of us who have impairments that have nothing to do with the cost of doing business, I mean um, fighting a war… We’re really in the soup.
But those things that would *support* the continuation of working…that would help the ones that *have* jobs keep them, as well as help those who are seeking to work find some
….Exist for the rich who can have a *staff* (even the “upper middle class” have “someone come in” to housekeep sometimes…
And if you’re on disability, programs exist on paper, but can be incredibly difficult to maintain and are subject to abuses, theft of your stuff…pca’s that are stupid, neglectful or downright dangerous….
There’s never been a good answer.
Denying Denial
I expect some differing opinion on this… but here’s to admitting my position that seems from the outside to be a bit less than compassionate.
If someone is not born with a particular impairment and yet, one comes along later in life….or the one you have gets suddenly worse, or sprouts new subcategories or something…or someone is responsible for an aging parent and that parent hits a rather sudden, steep decline, into further physical or cognitive impairment.
I think everyone should have at least sixty days of complete denial….[or a significantly longer period if the impairment requires admission to a rehab hospital] so the brain has time to adjust behind the scenes to the new impact….
But I’ve seen people in denial for *years* about impairments that they, or someone they are legally responsible for come up against…
Come on!
The earlier one accepts such a thing, and says “Ok, now, what *can* I do at this new level, etc. etc. etc.
The better off, no? Positives are found sooner etc etc.
Quality of life moves up from the “bottom” it hit at the day of discovery, and it moves up earlier.
I’ve seen parents with children with impairment admit that for most of the first ten years after diagnosis:
“I just went to sleep every night and prayed that when I woke up in the morning, they would be ‘normal.'”
That puts expectations on the kid that are next to impossible, not to mention effort by the parent that should have included acceptance of the kid as is, and searching for support systems so both the kid and themselves don’t go bonkers…
Or an elderly person convinced their spouse of many years will be able to “get over” a serious chemical imbalance induced depression, deciding not to pursue a particular line of treatment…”They don’t need that stuff,” with the subtext being “I don’t *want* them to need that stuff.”
What the person with impairment or the caregiver *wants* to be so, is not the issue. What *is* is the issue.
Denial is a natural part of adjustment to anything, but having the process of acceptance stuck in *that* kind of neutral….it is a disservice to oneself or one’s kin.
I’ve been called harsh and I suppose I am because people that do this, able and otherwise just irritate me. (I try hard not to tell them so, and generally vent to a disinterested third party.)
I do have this thing going on in my head that says, particularly to the formerly very able, very fit, and (from my perspective,) well off financially…
“Jesus! Stop standing there with your fingers in your ears saying ‘Lalalalala I don’t *hear* this!’ (metaphorically speaking) Do the research, and call the condition or impairment by it’s right name! Admit that something has happened.”
Admit it exists, and go forward from there *with* knowledge.
Then you’ll be ready to really fight fight fight, for that elusive help and support system that is so hard to come by more often than not….It’s going to be a struggle and a bitch to get what you need, because our society is presently structured to tell you *no*
Don’t ride the denial train too long.
One of the best I’ve read about caregiving
…and it warms my cynical old heart to see such a clear distillation of the basics.
No middle ground.
Opening Thesis: (Going back to a little middle school paper writing structure to make the ideas come more easily out of my recovering head):
Everybody has a window of competence.
That window may include simple things like eating, drinking, rolling over…listening or smiling…
Or it may include genius level work in the sciences, arts,academics…
And every step in between….
So, if everybody has a window of competence…If that is a valid idea…
How about an some additional “rights”!
See, this makes people nervous…
“Can’t go adding rights…or taking them away…that’s UnAmerican, or uncouth or unconstitutional…or…
Or… Expensive?
(Oh, I’m sorry, did I say that? Did I actually imply tht a society that maximizes it’s members potential could *cost money?* I guess I did. How gauche of me.)
I just believe that *everybody* has a right to
1. Have help discovering what their competencies are.
2. Have help trying to expand or diversify those things.
3. And have help attempting morphing their favorite skills or activities into something self supporting, or failing that, have help finding a competency that might lead to self support even it’s not their favorite thing in the world.
4. And if that is never possible, or, if they’ve attempted and come around to find that the pieces of their competencies are just not things they can get paid for….acknowledgment that ‘quality of life’ is also something everybody has a right to help with…
I’m woolgathering a bit…
Impairments
The able need a label, either something they can assign arbitrarily and hide their own fear of becoming impaired behind it…or something that they can draw from the resources of their profession. (The ‘medicalized’ labels)
A disquieting trend in medicine appears to consider and allow those with cognitive impairment as ‘subjects’ to perform procedures on…of course, informed consent is never sought and so never recieved, because the medicalized subtext of “cognitive impairment” implies inability to give *or withhold* consent…. and now even “fair game for trials, tests…”
And, the incapacity can be very brief, in other words an unconsicous patient in some ER’s around the country could find themselves as part of a trial…to study the effects of accidental trauma…
Cognitive impairment is not a free pass for…so called, study.
I always thought the goals of the teachers that I saw working with students with cognitive impairment (even in the big, bad 1960’s and 1970’s), was to find their window of competence and support, expand and develop it, not just so they could have a shot at being productive, [God I hate that word] but to assist the children and their advocates or parents in a positive manner to give the person a more varied tapestry of events and competencies in life…to challenge them yes, but not as a set up for failure…
Before anyone calls me naieve, I know much more now about the horrid disinterest, indifference, imprisonment, and abuses that happen when a child or adult with cognitive impairment is misdiagnosed and also neglected.
That part of my sojourn in the blogosphere has been quite the education …
And the part that gets my grey matter all knotted up is that those who want to perform these studies, tests, trials, treatments…they *believe* they are on the side of the *Good Caregivers* and not the horrible gone wrong abuses.
Is everyone in the US a person?* Yes.
Do those with impairments all have access to the same rights? No.
*Why* *Not*?
Midlife And Treachery 
