Mom & Me Four Archive

...NFCA sponsors a program called Greeting Cards for Caregivers. The organization solicits the "volunteer help from our caregiver members" to prepare and send the cards ["(All materials are provided by NFCA); NFCA designs its own greeting cards with up-beat messages to remind you you're not alone"] to other caregivers. Along with two anonymous testimonials, the sign-up form displays one card, the front of which is easily read and contains this quote by Rabbi Hillel from the Talmud: "If I am not for myself, who is for me? And if I am only for myself, what am I? [And i]f not now, when?" A few others are displayed in a small "bouquet" but impossible to read without significant magnification except for one which clearly says in comic book style balloons on the front, "Hi! How are you? I'm just a phone call away."
    It is interesting to me that the program is "currently on hold", although both senders and receivers continue to be solicited. I have no way of knowing for sure but my best guess is that the program floundered for lack of both recipients and senders.
    Although not entirely in sympathy with the idea of money being spent on such a program and certainly not interested in receiving or sending such cards (I get enough "inspirational" help from people and well-meaning caregiver websites and pamphlets as it is, so much that my initial response tends to be cynical; as well, I spend a fair amount of time inspiring those I know, both caregivers and non-caregivers), I understand the motivation, even for the questionable tactic of soliciting caregivers (as though we don't already have enough to do) to send the cards out to a mailing list of sister caregivers (I use the word "sister" to indicate that most caregivers are women): Let caregivers know that they are not alone. My problem with this, though, is that we know we're not alone. We know there are millions in this country and the world just like us, whether we "chose" or "didn't choose" our caregiver status (NFCA considers that whether or not one "chose" this role is significant and that if one feels that one didn't "choose" it one must get busy and decide to "choose" it; my feeling is that in a world where women are almost exclusively indentured into caregiving, including primary parenting, it makes little difference, realistically, psychologically or spiritually, whether one "chose" to be a caregiver, even though I consider myself to be one who "chose" this, and whipping oneself to "choose" something one is already doing by virtue of one's place in the human community doesn't make a whole hell of a lot of sense or difference). We also know that it isn't lack of communication with other caregivers that make us "feel alone". It is lack of concrete and adequate help and support from those surrounding us who aren't directly involved in caregiving. In a curious way it would be accurate to say that, literature or not, greeting cards or not, all caregivers have, and are aware of, an intense spiritual connection with other caregivers, especially those within their purview: Parent to parent; intense needs caregiver of an Ancient One to intense needs caregiver of an Ancient One; intense needs caregiver to An Infirm One to intense needs caregiver to An Infirm One. After we have been caregiving for awhile we can even silently recognize (and sometimes acknowledge, if we're up for it) other caregivers on the street through a type of care-dar.
    So, if it seems necessary to some caregiver advocate organizations to spend money on a greeting card program that is truly for caregivers, here's my greeting card inspiration: Solicit lists of people of all types, relatives, friends, professional associates and organizations (with addresses and phone numbers), from caregivers. Design and send cards (anonymously, if the caregiver wishes) that say something other than "Have you recognized the caregiver you know today? Have you thanked her? Have you inspired her?" What could the cards say? How about:

"Contact the caregiver you know and tell her you're willing to learn how to take care of her care recipient, find the time for her to train you, then show up on her doorstep and spot her for some hours or days."
OR
"Show up with a household maintenance tool (a carpet cleaner, a roto-tiller, an eave cleaner) and insist on doing a chore for her that you've noticed hasn't been done in awhile."
OR
"Prepare your home and family for intense needs caregiving, which will include learning all the caregiver's procedures, then go to the caregiver's home, pick up the care recipient and insist on taking care of the recipient in your home for a week (or more)."
OR
"Spend some time writing some meaningful legislation that will affect all caregivers felicitously, regardless of whether they sign up for a program, then introduce it before congress and lobby vociferously for it."
OR
"Resolve that for one month you will recognize all caregivers who walk into your office, treat them with unusual respect, solicit their opinions, accept their reality, and do something within the purview of your organization to lighten their load."
OR
"Resolve that for one month you will ride your professionals rigorously to pay as much attention to the care recipients you are serving as their caregiver does so that the caregivers who have entrusted their recipients' care to you are confident that the recipient will feel as safe, comfortable and loved as the recipient does with the primary caregiver. Go to any lengths to do this including keeping an eye on the recipient at all times; making sure their diapers are changed immediately when soiled; communicating and interacting with them on their level and enjoying this; knowing when to leave the care recipient alone in their reverie; noticing when doctors and other medical professionals are simply spouting the program regarding medical care and standing up to them; following the recipient around, if need be, and making sure she drinks the hydration she is offered; figuring out why a recipient may not be eating and do everything you can think of to either get that recipient to eat or respecting that the recipient is 'at that stage' where they are refusing food and hydration in order to hasten death...you know the drill. In addition, see to it that these professionals are trained, paid and respected commensurate with the attention you expect them to pay to the care recipients so they will be motivated to do the job. As well, make sure that your professionals want to be there and aren't there simply because they couldn't find any other low-paid labor."
OR
"Do something meaningful to educate and activate the non-caregiving community in your area about the intense needs caregivers within their midst and what help they need."
OR
"When an intense needs caregiver's recipient dies and the caregiver begins to flounder, be there with help, support, money, legal advice, medical care, whatever they may need, until the caregiver is able to return to the non-caregiving community in fine fettle. Don't prescribe a time, don't push, don't argue, don't question, just be their foundation. And, most of all, take their word for what they need, unless they say they need nothing, in which case see to it that you are as perceptive, all-encompassing and invisible as the caregiver was with her care recipient in offering support."

    Once the cards have been sent, activate a committee of people who will follow up with the recipients to remind them of the "greeting card" suggestion and further bother them until the recipient responds to the card and does something. And, whatever you do, DON'T SOLICIT CURRENT CAREGIVERS TO EXECUTE THESE TASKS!