Essaying the Situation
Friday, November 26, 2004
I Can't Get It for You Wholesale
    It starts with the fear and dejection that dictated part of a November 21, 2004, post of mine at The Mom & Me Journals dot Net. My only regular commenter, brainhell (and, probably one of my few regular readers), responded with indignant sympathy that included the following [SIC]:
    This part of his comment got me to thinking...what, exactly, can one purchase, with money, in the way of caregiving and who can buy it?
    Bluntly, the only way one can buy the kind of care I give to my mother is to be rich enough to afford a live-in nanny and/or a personal assistant. Insurance doesn't cover this type of care. It's only covered by success. Typically, too, this type of care isn't handled by one person, although it may be managed by one. At its best it includes:
  1. a nanny type of employee who is a CNA;
  2. a personal assistant who works closely with the nanny, manages the business of the charge's life and directs the efforts of the following:
    • a lawyer on retainer;
    • a financial advisor;
    • a tax accountant;
    • a medical advocate with the willingness to include alternative medical care in her/his purview;
    • a personal chef who works closely with medical professionals and the nanny;
    • a sanitary engineer who is familiar with the ins and outs of cleanliness as related to health requirements of the charge and works closely with medical professionals and the nanny;
    • a physical therapist who works closely with the nanny and medical professionals;
    • a pet sitter;
    • a driver skilled in handling transport of the handicapped and who works closely with the personal assistant;
    • a personal shopper who works closely with all the above;
    • a social secretary who works closely with the personal assistant and the physical therapist;
    • a groundskeeper;
    • reliable substitutes for any and all of the positions above to allow for personal and vacation time.
    Some of the above employees would be part time: The social director, for instance, and possibly the groundskeeper. Some of them would be paid for services rendered: The financial advisor, the attorney, the physical therapist and the medical advocate, in particular. Some would live in: The nanny, the personal assistant, possibly the driver. Some would be hourly and serve on a schedule: The personal chef, personal shopper and pet sitter. All, whether salaried or hourly wage earners, would have taxes withheld, retirement programs, health insurance, overages for work above and beyond the call of duty and/or overtime, paid vacations, paid sick leave and a satisfactory amount of daily, let alone weekly and monthly, personal time in recognition that they all have personal lives. Intangible qualities such as personal interest in the charge, ability and willingness to bond with the charge, etc., would be recognized with some form of payment, whether it be in gifts, bonuses, privileges, extra paid time off, etc. There would also be a host of out-sourced services including but not limited to hair and manicure services.
    All these employees and services are catalogued because, in one way or another, I do their jobs for my mother or these employees are ones we currently retain: The financial advisor, the lawyer (we're actually between lawyers, right now) and the tax accountant. In some cases I perform as well as or better than a professional; The medical advocate, the pet sitter and the personal chef. In some cases I perform their duties less well: The personal shopper, the groundskeeper, the nanny, the attorney and the tax accountant. In two cases it's debatable whether I do a better job, but I certainly do as good a job both in actual performance and decision making: Financial advisor and physical therapist. In every case, if I perform less well than the professional it is because I am also doing at least one other professional's job or I do not have the education, contacts and experience the professional would be expected to have. In two cases, because of my relationship with my mother, I am clearly a better choice than having a professional: The personal assistant and the nanny. In all cases I add something to the performance of duties by dint of my relationship with my mother that could not be duplicated by a professional, no matter how long and how closely they worked with my mother.
    At this point I imagine that any mothers and other related caregivers reading this are nodding and congratulating themselves on how accomplished and necessary they are. If you are one of these, remember that you are not being paid to perform these duties. It is very likely that your family could not afford to fairly pay someone to do everything you do. There are people in much higher income brackets, though, who have such staffs caring for relatives in need or for themselves. Some of their employees are extremely well paid. Some are adequately paid. Some are underpaid. Altogether, though, the employer is paying hundreds of thousands to millions to have these duties performed.
    The rest of us rely on insurance, fee-for-service professionals and the unpaid labor of relatives to care for our loved ones.
    I can tell you from experience, even excellent nursing home insurance does not pay for even a trifle of the services mentioned above. I discovered quite abruptly this summer that even in a "good" nursing home, no one gets paid enough to, for instance, make sure that your loved one's diapers are changed in a timely manner; do whatever it takes to make sure your loved one is well hydrated; make sure the condition of your loved one's skin doesn't dry to the flaking and cracking stage; not take "no" for an answer; make sure your loved one is eating what is put in front of her; notice inconsistencies in medical observations and orders, question them and follow up on them; pay personal attention to significant social niceties such as light conversation. This is not to say that I did not notice the compassion with which many of the CNAs and nurses performed. When my mother was released, though, she and I were both pleased that her level of care would immediately improve by leaps and bounds.
    As some of you may have read in a much earlier post, I discovered this year that it is impossible for us quotidian folk to hire someone to, for instance, awaken your urine soaked loved one, get them safely to the bathroom, strip the bed and deposit the sheets in the washing machine, spray the bed down, then leave. It is very hard, now-a-days, to find someone who will take care, in the home, of a loved one who smokes. It is hard to find anyone who will pay as much attention to safety and camaraderie as a loved one will. And, as MPS probably accurately posited when I vented my disappointment at our two experiences of leaving my mother with a "sitter", for most people who work and take care of a loved one (whether it be under normal parenting circumstances or the special circumstances of caring for an Ancient One or someone who is infirm), most loved ones' level of care is nowhere near as high as mine for my mother, for good reason: I am able to do it 24 hours a day, 7 days a week because my mother's level of retirement income allows me not to have to work to keep us afloat (sometimes provisionally, but afloat, none the less). Thus, those who not only care for loved ones but work to survive have lower expectations than mine for the performance of substitutes. These people are in the majority so their expectations affect the Caregiving Industry much more than mine.
    Our brand of capitalism operates from a spine of unpaid, low paid, outrageously undercompensated labor which includes the labor of parents and related caregivers. This condition exists within a society that stubbornly insists on "rugged individualism" and "personal responsibility" to the exclusion of recognition of the importance of micro and macro communities to survival. Under these conditions it's no surprise that so much of caregiving goes unrecognized and uncompensated except through useless and, eventually to the caregiver, irritating sentiment. The question of whether and how such care should be compensated through wills, trusts, divorce agreements and current living circumstances exists on such emotionally loaded ground that, often, any solution can adversely affect family bonds for generations. It is no wonder that a related caregiver has to summon much courage and bravery to consider negotiating such compensation.
    The solutions we are ultimately offered are amazingly short-sighted and absolutely off the mark. A few days ago I read an editorial in a weekly email newsletter devoted to caregiving that reminded everyone not yet in need of care to "have a plan" for their own elder care. My mother had a plan, one for which she prepared and would have been approved by the generator of the newsletter as well as most everyone who has never been involved in the care of an Ancient One. It included the determination to voluntarily submit to, first, assisted living care then, eventually, if necessary, nursing home care. It was backed with very good medical and long term care insurance and included yearly dues paid to The Eastern Star in the hopes that she and her sister would live out their Ancient Years together in an Eastern Star Home. It was stringently based on her refusal to become any of her children's wards, thus, in her mind, "becoming a burden". What happened to the plan? Life happened. As my mother aged, I think, and became aware of exactly how her plan worked in the lives of some of her peers, then, when her sister died at an unexpectedly young age, care within the bosom of family became not only more appealing but more important from both emotional and physical standpoints. As well, I don't think she ever could have predicted that she would give birth to a daughter who walked on the fringes of the wild side, thus would be available, emotionally and circumstantially, to accompany her with friendship, deep, assured love and intense attention through her Ancient Years. When she realized that she, indeed, had this possible resource, she did what any one of us would do: She considered all her options, changed her plan and solicited me in the hope that I'd agree to be part of her new plan. I did.
    Early in our partnership in her life we considered and consulted on the possibility of me being named my mother's employee. As it turned out, even in the best of financial years this plan would have bankrupted her. Once it became apparent that my mother's life required that I no longer work except in the service of her life, the best financial arrangement was to declare me her dependent (even as she is now so dependent on me that we will probably have me declared her guardian) so that our income would benefit from this deduction. Medical insurance for me would be more expensive than it would be worth under these circumstances, especially since my health requires little medical care. If we'd established a retirement plan for me the stock market crash would have ravaged it, both through devaluation and reappropriating the money to keep our life secure. As far as siblings kicking in to pay for substitutes, well, it isn't necessary. Any institutional care she might need is covered by insurance. If I find trustworthy substitutes to allow me a break that isn't shot through with concern for how well my mother is being cared, I'm sure we have the money to pay for them. Considering everything, my mother is still better off with me when I'm in "I need a break" mode than she would be with a hired sitter. Yet, despite the horrible societal conditions under which I care for my mother, I truly would not have it any other way precisely because she is my mother and because of the peculiar, close relationship she and I have.
    How much would it cost to hire me? You can't hire someone like me. You luck into "me's"; sometimes for money (and, you have to have a great deal of money in order to put yourself in the position that opens you up to such luck), most often because of love. It's the love, in this society, that engenders the complications.
Wow. You are so right.

But you didn't, I think, deal with the issue of What Happens After. A plan needs to be made to take care of you. And i can't believe you don't have health insurance. I mean, I believe it, given the sick nature of our times. But look at me, I'm living (dying?) proff that you can't just rely on good health and good looks and skip the health insurance. You need it now, just in case you come down with a God Forbid. And a large monthly stipend from your sibs.
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