by Ken Hepburn
Freedom. Rights. Autonomy. Being in charge of one’s own fate. These are deep values in our traditions. Civil behavior is anchored in principles of respect for a person’s right to make his or her own choices. Marriages and other family relationships are grounded in the expectation that all parties can and will act independently and responsibly.
Most family members bring this profound valuing of autonomy to their role as caregivers. However, the demands of the role can set up powerful and disturbing conflicts in the caregiver related to the issue of autonomy – and control. Caregivers have to make choices for and about the person for whom they provide care. Such choices are not easy in themselves. If the difficulty of making them is mixed with the feeling that they also involve violating the rights of the person or violating the existing relationship, then they can also be the source of great distress for the caregiver.
For the Savvy Caregiver, the reconciliation of this apparent dilemma is the recognition that the disease that is at work is gradually and progressively limiting and eroding the person’s capacity for free and informed choice. The Savvy Caregiver recognizes that some choices are possible. There are some things that the person can do and choose that are well within his or her capacities. But others are not.
Consider a range of choices and decisions: what shirt to wear; what to order at the restaurant; whether to take medications according to schedule; whether to use the stove; whether to drive to the store; whether to sell the house; whether to move to a nursing home; whether to refuse resuscitative treatment. The person may be able to sort through all, some, or none of these decisions in a manner that is comfortable and not confusing and to arrive at decisions that are sensible and not arbitrary. The Savvy Caregiver is constantly figuring out where the person is along that spectrum of capability. S/he encourages choice where there is capacity. But she removes the person from the situation of confusion, frustration, and upset that is possible when decisionmaking is out of range for existing capacity. Taking control like this – based on a respect for the person’s remaining powers – is part of caregiving. It is kind (fending off confusion) and respectful (engaging the person who is still present). It is also a savvy thing to do: it wards off potentially distressing situations and makes the day go more smoothly.
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