Tuesday, June 29, 2010

The Wisdom to Know the Difference

I was in the library today browsing in the new books and came across Gail Sheehy's book on caregiving, so I leafed through it, you never know, there may be something worth learning in there.

She uses the labyrinth as her basic motif, which I definitely approve for starters, since the labyrinth is a seriously important and useful part of my own life, very centering and helpful and never leaves you without some help, no matter what state you're in at the outset, not a bad claim!

But then she leaves me fuming and wanting to throw the book savagely across the room, but since it's a library copy, and brand new, and there are people there who read in here, I thought I better not do that there, when she gets off in the unconscious assumption that everyone has her privileges in life.

Don't stop traveling, she counsels, take that trip to Paris! As if. Keep the second house, you may be glad to live there on and off. Don't play God, thinking you're the only person who can take care of your chronically needy partner. Bring in other people! Lady, it's not about playing God, it's about there not BEING anyone else to take care.

She happily suggests getting help from agencies, tells about their fees, etc., and suggests the gray market of people working on their own, uninsured, etc., with no apparent understanding that in some markets there are no such people. It doesn't matter what sacrifices you are prepared to make to pay them, if they don't exist you're outta luck.

And she never once that I could detect grasps that a lot of homebound people are paralyzed, need to be transferred using a lift, can not turn unaided, are incontinent, need everything handed to them, food prepared in such a way that they can eat with a fork easily, etc., and that to get home health aides able and willing to do that is simply, well, it's the stuff of fantasy.

Months of searching by two agencies, calling me daily with updates, and a raft of friends and contacts have been trying to help me for over a year find anyone, daily home help or even this gray market person, and to date we have found: none.

Her notion of caregiving is taking care of people who can walk. No matter how sick, they can WALK. This makes the huge difference between homecare and not having the ability to keep people home.

So, Gail, honey, I don't think I'm God, I just think I'm all that stands between HP and a nursing home where he would dwindle in short order, instead of having a life.

I don't mean to put down people helping spouses and partners with serious and debilitating illness, just to point out that that's not the whole world of caregiving by a long shot. Medicare will not cover chronic needs, only acute ones. No hospice for a chronically ill patient who may go for years.

And even where Medicare entitles the patient to certain help, again, if the people don't exist, you can't get it. We didn't even get all the visits we were entitled to on discharge from the rehab, since they could not supply people. The people we did get were wonderful, and they lasted a few visits before retreating exhausted to go to patients who needed a lot less help.

She suggests a whole day off per month. Hm. How is that to be achieved, I wonder? you can't ask friends and neighbors to do the personal intimate cleaning and dressing and medicating care and observation and skilled transfer needed in this house.

Our son can and will, when available, and enabled me to have my wonderful three days away in May, which I still look back on with great joy. But once a month? not possible. And a whole week away at least every six months? who can get help to come and take over such a complex situation, only for a week, how long would you have to spend training them, even if they exist? and to ask our son to give up that much of his own vacation time, given the stresses of his own job, no, too much.

Aside from any other considerations, she does not grasp that everyone is not at her level of income, no matter how she wails about how they lost a lot of job chances because of his illness. Yes, I get that. But all it did was put her still considerably higher in the income hierarchy than a lot of people!

She was on the radio recently, her host being a therapist himself a quadriplegic who knows exactly what it is to manage catastrophic disability, and I was so happy that people had called him ahead of time, not able to wait on the phone long enough to be on the radio, to make these points, illustrating with their own situations: mothers of three small children, husband totally disabled from illness, zero family help, no money, etc. Middleaged men with wives with early onset degenerative illness, putting their own jobs on the line because there's no other way to take care at home. And many more. Not angry, nor reproachful, just thinking she ought to know this before she goes writing any more about it.

Heartbreaking and true situations you don't hear about because they are too busy taking care of everything to go on the radio and to write books about it, I guess. To do her justice, she sounded very abashed and confounded at these calls, and was really humble about accepting them. I liked her a lot for that. And she didn't fall into the trap of saying that you are never sent more than you can deal with.

This is not true. Ask me, as a veteran of the world of special needs children , about the parents who took their own lives because they simply broke under the stress. Or the spouses who simply vanished one day leaving the family broke and alone, because they couldn't do it any more. Not bad people, just normal human ones. Or the people I observed in the rehab whose families had just never shown up again to claim them.

People like me have undergone a lot of difficulty in life, not because we're special, we're not. I'm only an ordinary person playing the hand I was dealt rather than jacking it in and running away. Putting a cheerful face on it because it's wrong to impose our worries on other people, unless we have specific things they can do to help with them.

And that leads some of us now and then the most awful comment of all: when outsiders claim that the patient is doing so well, it means there's not much wrong with them. Thereby dismissing the heroic care being given at home that makes the patient look so well and fit. Only those of us who do it can know what it takes to have a partner look well, nicely groomed, happy, shaved, well nourished, cheerful. Doctors know. Therapists know. Neighbors who have seen people like me at work on it day after day know.

Onlookers have no clue, but I honestly don't blame them for not knowing, even when I do fault them for saying clueless things! that includes the folks who insist, oh take care of YOU, without lifting a finger to help you do just that. As Ruth L., a dear lady and a personal hero of mine, coping with a difficult home situation while still pursuing her profession in her 80s, advised me: dear, when anyone says that to you, deck 'em!

Lucky for Gail she wasn't any nearer, I guess!

Meanwhile, now that I've had my say and worn out my soapbox so it's all splintery on top, I will post some of the nice things I do for both of us, and for you, blogista friends, to bring beauty and peace and wisdom into all our lives.

Houseplants, clustered in a family portrait on the patio, at camp for the summer.

Wildflowers out front, those seed carpet things I put together a while back and fought off legions of squirrels for.

Daylilies out back behind the fence blooming away, with minimal care, just coming back over and over like welcome guests.

And far from least, the dear blogistas who post with helpful supportive encouragement. And how you let me have my say, and then I respect this by not getting involved in the comment section of this blog, figuring I've already had my turn, and the comments section is your turn! thank you.


dogonart said...

Hope you feel a bit better, having got that all off your chest. Very instructive and I'll cerftainly keep it in mind. I just hope I'm not one of those who have irritated you. If so, sorry, sorry.
PS..FYI I'm blogging again.

Magpie's Mumblings said...

I'm coming out of semi-lurkdom (I'm Irene's friend MA) to commend you on such a well written post. I am currently facing some of what you are going through with my dad. Right now things aren't too bad, but I know that they will get much worse unless the good Lord sees fit to take him first. All we can do is soldier on and do our best. Good luck!

dianesowo said...

Yes. Yes. Yes. I know whereof you speak, especially with transfers and total care. It's never as easy as you make it look.


Liane said...

These are good things to be reminded of. I have given these issues a lot more careful consideration since knowing you.

Heather said...

I think you should write a book about your experiences...although I know your time is pretty much taken up by HP's care and your own daily routine and art.