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My Very Dear Prescott Friend called me this morning...

Posted Feb 20 2009 7:22pm tell me there's a good chance that she wouldn't be able to make the next book club meeting a week from today. She'd volunteered to provide refreshments and asked if I could deliver them to the meeting. Nothing fancy: A bottle of white wine, a bottle of organic lemonade, some cookies. Because there is an ongoing pipe replacement/road reconstruction project going on in her area of Prescott and the "as the crow flies" route to her home has been replaced by a confusing detour (all detours in Prescott are confusing, frankly) she even assured me that she could deliver the refreshments to my house in order to save me the trial of trying to get to hers. Assuming she's right and she won't be able to make the meeting, one way or another, between us we'll get the refreshments to the meeting.
    She isn't sure she'll be able to attend because her husband is having hip replacement surgery on a severely arthritic hip Wednesday and will be recuperating next Monday. She hasn't made an absolute decision to forgo the meeting but pre-surgical conditions at her home, at the moment, are such that she expects she'll not be attending. The surgeon has instructed that, as of late last week, he engage in as little movement as possible, which he was attempting, previous to these instructions, simply because he is an "ox" of a man, hates not being able to move independently and has insisted on moving through the pain.
    Thus, their household has been thrown into the contingency of intense needs caregiving. My friend is expecting one daughter's family to arrive tomorrow and another's to arrive Thursday to help out, emotionally and physically, through the operation, but she and her husband are, at this moment, on their own and will be, again, sometime next Saturday when family leaves.
    Both my friend and her husband are in their 70s. Both are hale and hearty, physically and mentally very active. They take excellent care of themselves. If you were to meet them you'd swear they are in their 60s. As well, their history includes raising several children together and hosting her mother in their home until her mother's death some decades ago. Neither of them is unfamiliar with intense needs caregiving but it's always been at least the two of them performing caregiving, sometimes more, when children were at home. This time, too, her husband is nervously unfamiliar with being an intense needs care recipient, which makes it hard on both of them. Although there is no reason to believe that my friend's husband's convalescence and recovery will not be short and successful, this period and the period immediately after his recovery is extremely demanding on both of them.
    "I understand your decision, now, to stop attending the book club meetings," my friend told me this morning. She repeated several versions of this before we ended our conversation. In between repeats she related what she's been going through since late last week. "It's not that it's physically demanding," she said. I believe her, as she's strong, so is her husband and she tells me he is allowed to tend to certain personal chores with little or no help from her. "It's everything else. I wasn't aware how much he pitched in here until he couldn't. I'm doing everything. There just isn't time, anymore, for me to do the things I usually do. It's the mental aspect of it. The attention. He calls me several times an hour to do things that he would normally do for himself. I'm constantly listening, listening, listening. My attention is exclusively focused on him." She doesn't sound like she minds. She knows this is necessary and she's a cheerily accepting sort. She's just surprised at how much the tasks of and the adjustment to intense needs caregiving takes, especially when you're the only one in the hot seat. "It doesn't matter what I'm doing," she tells me. Whether she's running an errand (often a weekly errand that he used to run) or at home, her attention is focused on him, listening for his needs, anticipating them...mind you, he is not a particularly demanding man and, as well, doesn't like to be waited on, but, he's not in a position to do much for himself, either, right now.
    It was important for her to compare notes with me, now that she, as she admitted, "gets it", about what being a lone intense needs caregiver involves, how it affects a person's life and why someone who is an intense needs caregiver makes certain decisions, which just about every piece of caregiving literature derides, to, in effect, make the needs of someone else's life one's own life-needs. She admitted to me that even if her husband's convalescence goes well and he feels competent to be left alone next Monday night for three or so hours, she may not attend the meeting, anyway, because listening at home is easier than listening away from home.
    "I will never, ever, again, criticize any decision you ever made about what to continue and what to stop while you were taking care of your mother."
    "It's not easy," I told her, "but, what makes it hard isn't necessarily the choices you make on behalf of caregiving, it's that your circle of friends and family and the experts, too, are constantly at you to 'take care of yourself', 'do things for yourself', 'make sure you don't lose yourself', without realizing that their advice would have you living two lives, while the decisions you make that they criticize actually make it possible for you to live just a little over one life, which is about all anyone can handle. Everyone does it in the way that suits them best. Lots of times, those ways don't agree with everyone else's assessments. So, you block out the peanut gallery and do what you have to do."
    "I know," she said. "I see that, now."
    "Anything you need," I told her, "if you need to me to run errands, help you out at your house, figure out how to negotiate the current detour [because the detour changes, sometimes incrementally, sometimes drastically, from day to day], listen and commiserate, understand your decisions about what you decide to do and not to do, anything, call. I'll keep in touch with you, too." I'm sure she'll ask, if she needs anything. She's not afraid to ask. I was never afraid to ask, either. I just, finally, got tired of being turned down, most of the time; of receiving offers of help I didn't need while getting refusals of help I did need.
    And, you know, I get it, too, and I'll be there for her. Whatever she needs. Whatever she needs.
    Yes, it was a relief to finally receive validation on how I chose to live my life while being my mother's companion and caregiver. More important, though, was the validation of my belief that we have a long, long way to go before we learn how to support our intense needs caregivers to the Ancient and Infirm. Millions more of us will be called to the task and find ourselves disproving and, finally, rewriting, the literature of the day about what it takes to give this kind of care, what advice to give to the caregiver, who to advise and how to remold our society so that appropriate support is in place for everyone who is called to intense needs caregiving. We will, I suspect, realize that those who become involved in intense needs caregiving tend to find, on their own, the advice they need relating specifically to how to give care. Those sources are in place and easy to access. The people who need to be advised are those watching intense needs caregivers and telling them to take, rather than supporting them in their choices on how to take, care of themselves. When those books are written, it will be obvious that we all finally get it.
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