Happens To The Best of Us

[Gary Sisco]

Sooner or later, on one end of caregiving or the other. What I love is the jargon. If you're not paid, what you provide is "informal care" -- even if what you do is exactly the same thing that an LNA or RN does, in which case it's called "formal care." I routinely do things that the "system" will let no one with a license do but an RN. In short, a medically untrained person is allowed to do what trained, licensed aids are not allowed to do. Go figure the logic if you can.

Take a look at the cost figure represented by this "informal" care on the parts of millions of Americans: it's just about exactly the same as the annual average Defense Department budget over the last quarter century. This is something important for people to understand because other articles and studies have shown that while women are much more likely than men to provide caregiving to family members, they often burn out after five years or so. (I've been Bronwyn's primary caregiver, 20/7 at least, for twice that already.)

If a lot of people start bagging because of the inherent stress, lack of rest, greatly reduced income (mine went from 28k to almost none), inability to meet a regular job's schedule requirements, clinical depression, and so forth, the US's medical infrastrucure will face a Katrina of its own. For decades, in most places, nursing home "beds" have been taken "offline." (You have to wonder about all of this jargon.) There are fewer now than in the past, though the population is much older by comparison, at the same time. Publicly paid homehealth assistance is very limited in scope, even if you can find an agency that has staff enough to honestly claim an ability to serve all who need it. State governments are very often prone to making glorious commentary on their efforts, but like most self-praise from a state, it's more CO2 for the atmosphere and nothing else.

This will become a bigger -- and more intractable -- issue in future than healthcare is today. Today's problem is access. The coming problem is quite simply nowhere near the human workforce to meet the problem, and it's shrinking all the time as nurses and LNAs "age in place" -- meaning that they're not being replaced by younger ones coming up. As those nurses and aids age into their own elderly years, what's already a chronic shortage of people in those occupations will become its own perfect storm.

It's not going to be pretty. Especially when one considers the slowness of any government at any level to make any kind of move until disaster has already occurred.

http://www.latimes.com/features/heal...me-middleright

[tippy]

stressed, depressed, eroding physical health. That is me to a T. It ain't easy that's for damn sure. No matter how much you do out of love, it sinks you right into the ground when you are completely on your own with no assistance. A death sentence.

[tippy]

That is a really well written article. I would like to do something to assist caregivers but I don't see myself spending any more money on school for a career change or anything and the moment you try to make that something that your career - you know as means of support - at the level I would want to do it at, on the ground providing practical assistance, I am sure I would need to be at least an RN.

The older I get, the more I realize that the only way to really take care of the abundant needs that one can find in any community is at the level of the community. It is so much more efficient than waiting for the government to spend oodles of dollars providing half-assed aid to half the people that need it. So and so whom you know or are related to has lost job and is losing housing, the people who know so and so step in to provide assistance until so and so can get feet back on the ground. Woman caring for ailing parent and children needs to some relief to help take care of herself, her neighbors step in and take over so she can go on a vacation with her kids or what have you.

Problem is we no longer have any sense of community. We are all separate I guess as the nation grew or how did it all happen? Now of course our common culture is tv and media, internet, etc. and we all know the same things, partake in this oneness of culture, yet really we don't know or see eachother at all but just live in these very small worlds disconnected from the suffering of people immediately around us but whom we don't know. The government is never gonna save us and those you love, and when it does, it spends way too much energy and money trying to produce a crap ort that doesn't go very far.

[Gary Sisco]

There are also things, frankly, that no neighbor would or should want to do. Nor would the handicapped or elderly person want them to. Matters of real personal dignity and so forth.

There should be, and will have to be, eventually, some form of public support at least for respite for people who provide "informal" care full-time. What they've done so far is repeat what they did first with the mentally ill. Dump them out into the street while claiming that virtually non-existent "community services" would meet their needs, outside an institution. Those "services" for the most part, have been homeless shelters. They are doing the same thing, and as cynically, with people's desire to be cared for in their own homes as opposed to an institution. They're out of the institutions but given nowhere near the "community services" that they need to live like a human being. Never mind their families, who literally become those "community services."

Both examples allowed the governments (state and federal) to cut some spending while pretending to be helping people live more independent lives, while refusing to provide the material basis that makes an independent life possible to begin with.

The toll on caregivers is extreme. I saw a different article yesterday describing how people who live under conditions of chronic stress and distress suffer memory damage (the area of the brain that is most effected by chronic stress is the same as that which processes, or doesn't, memory).

In short, the way things are being done today is literally harmful to a caregiver's physical wellbeing in numerous ways -- creating, eventually, and ironically, another handicapped person who requires assistance.

I know I've suffered physical damage for it, and psychological damage, to a point where I'm fairly certain my life expectancy (other things being the same -- no one is guaranteed a single day's more of life, in any situation) has been effected in significant ways. Nor was I surprised to read the results of the memory study.

There is also a huge and terrible toll on the person who requires constant assistance. It's an awful thing to have to live with, that kind of dependency on others *particularly* those you love. It's very much a two-way street. I know Bronwyn suffers mightily for being completely dependent on my assistance. But the truth of the matter is that it's only my assistance that allows her to live in her own home. Take me out of the picture and she has nowhere to go, anywhere in the US, but a nursing home. People don't normally think about what kind of toll that knowledge takes on the person being cared for.

But that degree of dependence and that degree of damage is a result of social policy. It doesn't have to be as it is.

Ironically, one is in most cases "entitled" to respite when one's loved one is dying, in the form of hospice workers.

Again, it's one of those weirdities of American life. At the beginning of life, nothing's too much for "the children." But when they mature to adulthood, fuck 'em. Until it's time for them to die. Then, once again, nothing is too much for them.

It's really a mad set up.

[tippy]

No I hear you. My life is literally over and nobody knows it but me because you can't understand this stuff unless what it's like to have someone's life depend on you unless you live it. And it's true too that you don't resent it per se doing this - just gotta be done - but the stress of knowing that you are wearing yourself out with it and the both of you or all of youse is gonna be shit out of luck is mindblowing. I know this and interesting too cuz my memory now is crap. It's pretty crazy to me that people who perform the diagnosis give the instructions for care don't recognize how much it takes to keep someone alive with a decent as possible quality of life. That's bizarre to me and that's what I mean no one knows it until they've been in the same position. Crap not even the medical people. I do want to do something to this end before I die so at least there's a record of it. In one sense it's amazing how quickly you learn about the human body and what it needs and how to take care of this and that problem, but without assistance, and compounded exhaustion. Forget it - you're a goner. But won't need to I guess as so manys will be in same position.

[Gary Sisco]

What galls me the most is this talk about "independent living" (which language has literally replaced the word "handicapped" in Vermont's state's employees lexicon -- you're not handicapped, you see -- what you are is "independently living" -- and you are, living independently and increasingly so every day from any social assistance at all).

Bronwyn's "formal" care has literally not followed the same schedule two days running in more than a year. It has been literally impossible for her to participate in her own horsefarm except to the degree she's able to from her bed, literally. And it's very much contributed to our losing of the farm. Not just the past year's madness but almost nine years now of continuous struggle to receive an ever-diminishing level of care that was to begin with only the barest minimum possible care to keep her, or people like her, out of a nursing home and hence off the state's books.

It's inhuman, this system, in a literal sense. Antihuman, even.

And then on top, if you complain, you're told to be grateful for what you do get because you can always get nothing at all in America in the way of medical assistance. And, arrogant as it is to say so -- I once told a state commissioner that saying things like that is like telling the brother down the street to be grateful it's only Vermont's racism he has to deal with, hey -- he could be in Mississippi -- there is a way in which they are right. They will in fact abandon your ass altogether if you pass a certain level of dissent, which level of course is established by themselves.

[burning dog]

Independent living. Haven't heard that one yet.

A voluntary organisation I am connected were informed they had to put that they supported "diversity and equalities" on all their correspondence, by the local council, who think it's meaningless themselves.

Its just Gov't social policy jargon.

Either spell out what it means or shut up, I say.

[Sandi22]

There keeps being talk about paying families and spouses the same they'd be paying accredited care facilities for the care they're giving. It would be a great thing if they could do this without burying everyone in reams of paper work, as with any government program the paperwork alone is overwhelming, especially when going through something as stressful as what You're experiencing Gary.

Did you ever check out a reverse mortgage? Or is it too far gone in your case for that to happen? They aren't always the best thing, but in certain cases they do work, depending on how it is all drawn up, etc.

You guys break my heart with all of this. Makes me, and I would imagine everyone else, wish we were miracle workers, or that we would win the lottery.

[Gary Sisco]

Actually Bronwyn got a law passed in Vermont to do exactly that -- give the people the money directly and let them hire who they want and as they want. The state bureaucracy slapped a bureaucratic veto on it by refusing (more than a decade now) to write regulations for it and refusing to try for a federal waiver it would have required. (They've twice sought and received waivers for other things that *they* wanted implemented -- as in, for example, when Dean instituted "welfare reform" before anyone in DC had done anything but talk). Their position -- which they actually had the balls to say out loud -- was that its implementation would cost too many state jobs.

Amazing arrogance. At the time, Bronwyn had a whole presentation. It was costing the people more than $27,000 a year to pay caregivers $5.50/hour and that only part time. The rest of the 27k was eaten up by "administration." It would cost more now for what's become less assistance over time. Ie, it costs more per year to "administrate" chump wages that are more part time now than they were then.

This is one of the reasons I'm an antistatist, right here. Elections come and go, governors come and go, legislatures come and go, but all of them are a tiny fraction of the people who make up a government. The huge proportion of them remain until pension time regardless of elections or their outcomes, and they can and do create and implement their own policies (or refuse to) as they see fit, elections and pols and laws be damned.

[Gary Sisco]

Burning Dog -- Yeah, I had to crack up in a sick kind of Orwellian way. They used to call it the Dept of Aging and Disability. Now it's Dept of Aging and Independent Living -- now that they're providing less assistance than ever. It really does become absurd. They'll change the "aging" word also, guaranteed. Bronwyn gets a women's catalogue in the mail all the time, directed at 50+aged yuppie women who apparently think they'll just never get old. Anyway, it's called "As We Change." Not age, change. I can see it already, the Dept of Change and Independent Living. Whatever they come up with, it will be as absurd. This kind of people seem to actually believe that language alters objective reality. You're not disabled; you're "differently abled." Shit like that. Bronwyn's always mocked the whole business. She was a professional equine athlete making damn good money one second and quadriplegic the next, for a patch of ice on the road. When people tried to get her to stop saying disabled she lit into them like they've still not forgotten. It gets so stupid sometimes that, like the Bush admin, it would be hilarious if so many people were not hurt by it.

I wanted to emphasize because of the nature of this thread, that I'm not complaining about being Bronwyn's primary caregiver almost all of the time. I'm complaining about the refusal of social assistance for people in her boat that amounts to anything remotely like what is actually needed, even in medical terms alone. It's all fine to talk about one's "community" (another word they love to abuse) and friends, neighbors and families, and all of that, but the stark truth is that it's all bullshit. You don't call your neighbor to ask if she'll come over and wipe your ass for you, let's face it. Nor would you call your brother, likely, if you're a woman. These things are just fantasy. Never mind that people have to work so most of the time they aren't home anyway.

All of the assistance we've ever had apart from the minimal and more minimal all the time homehealth care, we've had to pay for out of pocket. It's been a lot of money, too. Enough so that we are in real dangerous territory, financially. There's a real potential here of just going belly up broke in the end.

Every once in a while when we talk about moving, someone will ask us, But aren't you worried about moving so far away from your support network?

I'm like what support network? I'm the support network and I'll be moving, too, so what difference could that possibly make? I don't know where people get these fantasies many have about "programs" and "assistance" and yak yak that don't exist in the real world. Even Bronwyn's doctor, until this past time since last fall when another homehealth care war broke out and is still ongoing today, kept telling me we had to take advantage of "programs" and "services" and "respite" and so forth. I'd tell her such things don't exist and she just wouldn't believe it until she finally got down in the muck with us for a fight over Bronwyn's actual, literal bodily integrity. Gradually, she started understanding that these things she'd talked about really are fantasy, and that Gary really was spelling out the hard truth of the matter. I wish she'd have had that realization years ago, as with a doctor on our side making the same complaints about violated rights and assistance Bronwyn's entitled to by law, the complaints ring louder. It's one thing for me to say that a nurse is practicing medicine by unilaterally altering or refusing to follow a doctor's plan of care (as law requires). It's quite another thing when the doctor makes the same complaint, in writing, as she is, now, finally. So maybe we'll get some kind of let up eventually from this continual struggle but it will likely require even so a really down-and-dirty fight that gets several RNs licenses revoked. And they will very much deserve it when it comes.

[Gary Sisco]

There's another, practical factor involved in this subject, too. If so many people are now providing "informal" care that, if paid, would amount to just about the same amount of bread per year as the Pentagon's annual budget, that's a whole lot of labor that has been taken out of the labor pool. And the number will only continue to grow as the largest generation in history enters its white-hair days, like it or not.

If I'd continued working at the level I was before I became Bronwyn's primary caregiver by default, I'd have made something in the order of $280,000 in salary over that period of time (which lengthens ever day). That would also mean that in the same period of time, the state and feds did not collect income taxes on 280k, nor were the social security/medicare taxes paid in. (And my estimated monthly soc sec check -- they mail a thing once in a while telling you what you can expect if you continue to work for x years at more or less the same income level -- goes down all the time. The estimate has gone down about a hundred bucks a month over the time Bronwyn and I have been living together. The last time I heard from them, the estimate was something not much over 500 bucks. That won't buy a bag of groceries that far out, never mind rent or a fuel bill or what you.)

If you think about the number of people who are dropping out of the formal labor force in large numbers for these reasons and do that math (while always remembering that there are more such people all the time, and will be, as we age) it's looking pretty disastrous for the boomer elderly, especially given the trillion-plus deficit at the federal level that will have to be paid back, therefore squeezing budgets for social services even more by many factors, and so forth.

It's really not going to be pretty. There are a whole damn lot of boomers whose idea of "retirement" is *not* providing medical assistance to each other until they die.

Nor can anyone "save" enough money to cover such things themselves. That's another fantasy. How many here could have saved the quarter mil Bronwyn's rehab alone cost, never mind the extraordinary expenses she faces every day, which annually amount to more themselves than many Americans make in annual pay. There's no regular working people in the world who could save enough to provide for themselves in a dignified way, all on on their own, when they, or a loved one, eventually becomes injured or infirm, which is, again like it or not, a fate we all face if we live long enough.

As it is the elderly often live on a sharp edge. One time a friend and I were doing a voter-registration drive in this little Vermont town where we were living. I knocked on this one door and a very old woman answered the knock and kept saying "It's so cold in here. It's so cold in here." And it was. I asked her if she wanted me to call anyone, family or something. She couldn't answer, she just kept saying it's cold in here. So I asked if she wanted me to check her furnace for her. She was so out of it she didn't know how to even answer so I found the stairs and went down to check. Totally out of fuel oil mid-winter in Vermont. Cold enough in the house so it was close to pipe-breaking time. I can't imagine what might have happened if I hadnt come along, entirely by accident. I called the police and asked if they could arrange for a fuel shipment for her and then waited to make sure the truck actually arrived and that the furnace was on and working properly.

Ancient woman, clearly not altogether tethered to the planet, all on her own in an even older town house without heat.