Friday, August 22, 2003
I remember mentioning in a previous post that I find it ironic that those who take care of others are now being blamed for not taking care of themselves as well. Interesting paradox. I suspect that if most caretakers in the world were not fighting centuries of having caretaking duties implacably assigned to them in lieu of being assigned incrementally to everyone who is able our societies would not be trying to ride the wave of implicit insistence that caretaking be assigned to only one person per household and would be explicitly insisting that all people be geared from childhood toward taking on some cooperative caretaking here and there.
It is not the detailed advice strategies for taking care of oneself in Caretaker! Take Care of Yourself! by Debbie E. Mandel posted on Beliefnet to which I object. All of them are good strategies. Cursory searches in any of a variety of media quickly produce a wealth of strategies that exist to be tailored for use by the overburdened caregiver. My objection is with the current tendency of advisers in this area to take advantage of the fact that those who are the exclusive primary caretakers of others have such an overwhelming sense of responsibility for everything and everyone within their circle, including themselves, that not only are they not inculcated naturally to question the wisdom of being admonished by their society to also take care of one more person, themselves, they often have neither the time nor energy to question this received wisdom. Thus, they fall into the equally treacherous trap of thinking they are at fault for not having the time and energy to "take care of themselves" in what is advocated to be the proper manner.
It is important to note that I'm not simply talking about adult caregivers of elderly relatives. I'm talking about all non-professional caregivers including parents, especially those who are performing caretaking roles so primary that they are the exclusive caregivers within a household. On 7/23/2003 Dr. Phil aired a segment entitled Money Matters. One of its featured guests was a wife and mother who was endangering her family's financial status through compulsive shopping. In recounting her reasons for doing this she mentioned that she felt undercompensated for her caregiving role within her family. Her description of her role was a classic portrait of the overburdened, undercompensated caregiver. The advice to her was to go out into her community and volunteer, give of her self. She was assured that to give of oneself was the most self-rewarding activity in which anyone could participate.
My immediate reaction was, "What's wrong with this picture?" Here was someone who clearly was undercompensated for giving of herself, knew it and was suffering from this undercompensation so critically that she was making harmful choices about how to seek the compensation she not only desired but needed. She was told that the best way for her to handle this dilemma was to give some more, this time to people outside her home. Am I the only one who finds this advice suspect? I don't think so. The last frame of this woman's face registered a stun gun look; one a burn victim might exhibit when being told to apply heat to the burn, an explicit "Does Not Compute."
Although the Beliefnet article and this segment of the Dr. Phil show appear to be unrelated, they are related as closely as siblings. These are, currently, the two most popular forms of advice handed out to overburdened, undercompensated caregivers: Do it yourself (usually called "taking personal responsibility"; an obvious bit of propaganda) or do it some more (which implies that if you aren't feeling the reward for giving it's because you aren't giving enough). The only reason why these nuggets of advice aren't, at the moment, being questioned is that our caregiver class is primarily women raised within the nuclear family paradigm, a paradigm that can only exist when one undercompensated, overburdened person performs most, if not all, caregiving tasks within that unit.
The first truth I understand about caregiving is that in taking care of my mother I am performing one of the many tasks involved in taking care of myself. If I were not my mother's primary caretaker I would be as concerned as the other members of my family about the quality of her life in every detail. If she were not being taken care of by a trusted family member this concern would burden whatever life I was living.
My second understanding is that the state of non-professional and professional caregiving in this country is a sorry mess. One of the most frequent pieces of advice to the overburdened caregiver is, "seek professional help". The irony is that the state of professional caregiving in this country is so bad that within the last six months I've noticed that ambulance chasing lawyers are finding it lucrative to buy advertising time on TV to solicit clients from the families and guardians of people who may be suffering abuse and neglect at the hands of professional caregivers. As well, I have yet to encounter a personal caregiving web site that has not posted at least one instance of hiring a professional, temporary in-home caregiver who had to be discharged due to substandard and/or abusive care, usually discovered by accident by the caregiver. In most cases the caregiver was flabbergasted by their discovery because they went to a great deal of trouble to hire who they thought would be competent care including checking references, contacting reputable oversight organizations, stringent interviewing of the candidates, etc.
We shouldn't be surprised at this state of affairs. I recently heard the statistic that the average life span of a professional nurse's career is 3 years. The reasons most often cited for leaving this profession are, in digressive order: Underpayment, overwork due to understaffing and supervisory mismanagement of their nursing skills and resources. As well, even the "best" of nursing homes has a critical problem with staff overturn of professional caregivers, most of whom are well below the professional certification of RNs. Thus, if you are considering that a nursing home or assisted living facility is the "best" solution for your loved one and yourself as an overburdened caregiver, in order to make sure that your loved one is receiving appropriate, compassionate care you should personally recertify the facility constantly, every time a staff member who is directly involved in your loved one's care is changed. You can't tell me that this is a relieving, viable option to personally caring for your loved one.
Then, we are told, "Don't feel guilty for cutting back on caretaking tasks by assigning them to someone else." In the case cited in Caretaker! Take Care of Yourself!, where all the caretaker's charges were capable of a high level of self and other care, this is wise advice. Try telling this to a caregiver who does not have a personal support network of trusted family and friends willing to help and who is taking care of a child, elder or person with a debilitating condition who obviously needs intense caregiving.
The third truth I understand about caregiving is that it is most personally rewarding for those who chose to give care from a motivation other than "nobody else will or can do it" and who have not been charged, most of their lives, with primary caregiving. I am in this category and I know my peers comprise an infintesimal percent of caregivers.
The fourth truth I know about caregiving is that, while it is certainly necessary at this time to be a Fearless Caregiver (thank you, Caregiver.com for this appellation) it shouldn't be necessary. Fearing or fearless, we should all be involved in a measure of caregiving according, to our physical, mental and emotional abilities, for those of our loved ones who need it. This nation, particularly in its extreme capitalistic and individualistic slants, makes this ideal almost impossible to achieve.
During a lively discussion about men at my mother's salon on a recent Hair Day, my mother's hair dresser observed that the generation now in their 30's seems to be distributing caretaking tasks noticeably more equitably among men and women, perhaps, she continued, because it is nearly impossible for a nuclear family to exist on one paycheck. She talked about a party she attended recently where several men in their 30's were holding and caring for children, paying attention to them, changing diapers, etc. She also observed that young men and women in their 20's were not following this example. These young women were slavering over the young men, taking care of the children and the young men were expecting it.
The fifth truth I understand about caregiving is that, in the atmosphere outlined above, caregivers can be and often are other caregivers' worst enemies. Because the task is mostly plied alone and is so hard and so demanding, those few who are "successful" at solitary caregiving have no sympathy for others who aren't. The attitudes and suggestions of all the well-meaning articles and advocates scolding caregivers to take care of themselves grant these monster caregivers insidious support.
And, now, laws are being passed to "help" modify the behavior of overburdened, undercompensated caregivers of both professional and non-professional stripes in order to protect their charges from abuse. I consider them an attempt to force caretakers, though fear and threatened punishment, to tow the line, both in taking care of themselves and taking care of others. I expect that these laws and whatever agencies they spawn will work just as well as the laws and agencies that purportedly look after the interests of children at the hands of their parents and guardians/caregivers; which is to say, they won't work. In many cases they will undermine the practical, wise efforts of those attempting to provide care for their loved ones.
Years ago I stumbled across an enchanting photo/word essay published as a book whose title I, unfortunately, don't remember. It was the story of a family whose eldest member, I believe he was the grandfather to one of the parents, was afflicted with Alzheimer's. The family decided that, instead of institutionalizing their loved one, they would accept the adventure of taking care of him within their family unit. They safety-proofed their house, just as parents do to protect their children, and involved every member of the family, including the children, in the care and enjoyment of their Ancient One. The photographs were unrelenting in their realism which, I believe, is what rendered the book so delightful. The one photo that has stayed with me is a gauzy black-and-white of the Ancient One in nothing but paper underwear dancing through the house, haloed with sunlight. I have, on occasion since taking on the role of my mother's caregiver, tried to track that book down without success. Although my adventure with my mother does not involve dealing with this level of dementia, this family's story, even in my faulty memory of having read it, still provides inspiration for me as my mother and I continue. It is literature about the caregiving experience like this book, I think, that needs to be produced and disseminated to caregivers rather than essays and lectures from well meaning advocates and friends that scold the lone caretaker to "take care of yourself."
I look forward to the time when society finds it unnecessary to pep-talk their lone caregivers into being "fearless" because so many people will naturally be involved in the care of loved ones that if one or two are fearful or incapable of any particular task another one or two will be available to step up to it and no one will feel overburdened or guilty.
All material copyright at time of posting by Gail Rae Hudson