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Grown Children: The upending of caring relationships in the family disturbs the clinician’s program of care (as well as the clinician herself).

It is difficult to give up raising children even when they’re already grown, no longer dependent, no longer needing care. (I know; I have suffered that perseverative compulsion to continue protecting and teaching the already-grown, and I arm-wrestle daily, gaining merely meager progress against such patterns of my addiction.) And it is remarkably difficult to shift caring roles when a grown child has occasion to act for the sake of a parent who is becoming needy and dependent.

As usual, I appear to blame our shared culture for conventions which camouflage our communal blindnesses; I try to warn us away from them (waffling between the roles of the boy who sees through the emperor’s new clothes and the boy who cries wolf). But really, I hope I don’t blame us at all, for I truly believe we try to do the best we can. Because we need better than what we now have I encourage us to try to do differently.

It is difficult enough to raise children, and to let go raising them when it is high time. It is more difficult to begin caring for parents effectively, and most difficult to let them go when that time has come.

Usually we see grown children (or other significant others) caring and responsible about aging and afflicted patients, discussing important clinical issues with patience and understanding, making difficult decisions in a most responsible, caring and realistic fashion. Infrequently we deal with well-meaning persons driven to control even the minutest details of treatment who are motivated by the unrealistic expectation to keep the patient alive no matter what.

Clinicians tend quietly to agree with each other that these persons are difficult to communicate or reason with, but we do not often stop to ask why, nor do we share effective methods to improve processes of collaborating effectively or peaceably with them except by an inappropriate capitulation to their often counterproductive dictates.

To be well-motivated as a medical decision-maker I wish to be knowledgeable, rational and comforting for the sake of the patient. But if that patient is my parent (or the equivalent thereof) I have an unfamiliar new responsibility to protect and care for this person, a role and tasks which seem quite different from those I was used to for several decades.

Even if I suffer no difficult emotional twists with regard to my parent I will likely feel unsettling the turning upside-down of our previous relationship, at least until I can absorb the reality that this person needs help not from the child I was but from the adult I have become. When I have faced those real needs and have had some success at developing working collaboration and communication with my parent’s caregivers I can be relatively comfortable with my responsibility as medical decision-maker, “medical power of attorney” (“POA” or such).

But things are usually not so simple, especially in this unimaginably complex health care context. I am thrown off balance or even overwhelmed not only by technical details of diagnostic and therapeutic mechanisms and substances, but by arbitrary and fragmented financial and bureaucratic requirements (not merely “details” at all).

And who among us has a simple and serene relationship with our parent clear down to the bed-rock level? Isn’t it a truism that blame for my problems in life can eventually be laid at the feet of my mother? Who among us is a perfect parent, and who of our parents has been so perfectly? Okay, most of us have made peace with regard to our infantile complaints (a main part in our tasks of growing up and in being able to become parents ourselves). But who of us has done that thoroughly?

Some few of us indeed carry a burden of resentment against our parents (mother, father, grandparent whether present and close, absent or emotionally distant or distracted). Those few run some risk of inadvertent bias in the direction of sadistic vengeance when they come to a measure of control, especially if they feel they suffered from that parent’s exercise of control over themselves in the distant or recent past.

My grandmother, my mother’s mother (my own first teacher and protector) suffered slowly progressive but inexorable Alzheimer’s dementia. My mother dutifully cared for her through many years (always one to behave properly without complaint), getting her a close-by apartment, then taking her into her own home, and finally into a nursing facility. Though I had felt a distance from my mother for some time (without significant resentment) we never mistrusted each other. In the middle of one day while I was working in a busy clinic she called me gasping and sobbing. “I have to put a pillow over her face!” After a momentary pause for dramatic emphasis I said, “Naw. Bad idea. It won’t work.” I felt her relief at the other end of the line. That is when we became good friends, I out of gratitude that I could be helpful to her, she out of gratitude that she was relieved of obligation to perform an unkind kindness. Now that her own Alzheimer’s is far advanced I and my siblings can cooperate in treating her with kindness, partly because of her own hard work in relation to her own mother, her work in nursing homes thereafter counseling families, her participation in Alzheimer’s research as a “normal control” (before she developed the disease herself). We don’t have to care for her to look good or to feel righteously obedient, but only out of appreciation, love and hope.

As you and I have discussed before (especially in the early chapter “Superstition in Modern Medicine” and in the chapter entitled “On Alzheimer’s Disease…”), our culture imposes on each of us unrealistic expectations of immortality and invulnerability from pain or disability. These unrealistic expectations constitute insurmountable obstacles for families of some of our patients, convincing them that not enough care, effort or resources have been provided if the patient is not restored to a previous level of functioning or comfort.

Even before the internet, any of us could find on the television or read in the library about cures which might reverse the ailment or degeneration of this parent; now we google up those cures in fractions of a second. When health professionals do not offer those things we have heard of, we get more than merely angry, for we have a responsibility to call for the best, and to get it. Sometimes we expect there should be an operation to remove whatever may cause this illness, the familiar attitude, “I don’t care what you have to do to fix it, just fix it!”

Some of us have biases against some sorts of treatment, even though those treatments may seem reasonable to the caring professionals. I wonder if “The patient is allergic to morphine,” may not sometimes mean “The family is allergic to the word ‘morphine’.”

It is not so difficult for us to see there may be distortions from guilt or hidden resentment in these circumstances (as alluded to above). Sometimes culturally determined patterns intensify a sense of responsibility: sometimes women feel obligated to nurture the suffering parent back to health; sometimes men feel obligated to fight for a parent’s recovery.

It is remarkable to me that I and my professional colleagues rarely see something common in television fantasies, the desire to do away with the parent for hate or money. Quite to the contrary, we are confident our patients’ families sincerely struggle for the welfare of that suffering person.

The primary decision-maker is the patient. A designated decision-maker is the one chosen by the patient or by a judge, not by us professional clinicians. We defer to the decision-maker not with regard to professional assessment or recommendations, but with regard to decisions to accept, reject or alter our recommendations. The patient’s previously expressed or understood choices or preferences have priority. We ask what expressions of them have been understood by the family, by us professionals, or considered by law to be acceptable (such as in questions of assisted suicide).

We need not fear to decline to do something just because someone demands it. Though we never act contrary to the decision made by or for the patient, it is not productive nor proper (nor sometimes ethical nor legal) for us reflexly to capitulate to unrealistic demands, especially if they are counter the known preferences of the patient.

Sometimes one family member may argue with another about what to do. We can’t take sides on a personal or emotional level; we just offer our experience and understanding (and sympathy). If we are calm, maintaining clarity of mind and myopic loyalty to the patient, we will not be dragged into irresolvable conflicts, law suits, and all the fantasies of our direst fears.

If we as professionals try to use our vaunted knowledge and rationale, to exert professional authority over the difficult grown child of our patient (or over the family as a whole), it will be ineffective, counterproductive and noisy. But these are difficult human realities in the face of which we have no pat answers or irrefutable protocol.

Are there any helpful tools our experience offers us? Yes. My research (asking my colleagues during breathing-spells between acts of attention to patients) consistently results in a simple formula: Do not argue. Listen.

It seems our experience is that sometimes brittle or driven family members soften gradually when they can hear themselves ventilate demands or expectations which are unrealistically extreme or at the expense of the patient’s comfort or peace of mind. If I hear myself protest too much, perhaps even I will perceive I am trying to please my own needs rather than my ailing parent’s.

A family may need support not only in their mourning after someone dies but mourning even before demise. (So do patients need support in mourning the ends of their own lives.) Some families may need (but rarely seek) repair of strains and rifts beyond mere mourning of the loss. We have no pat formulas for these healings, but we can keep in mind and heart the human needs beneath symptoms of stress and dissension which surface in what we call end-of-life care.

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