CareGiving As Accompaniment

How much attention do you pay at a concert to the accompanist--the one in the background, at the piano, playing along while the star performer does his or her thing? It is pretty much taken for granted that there will be someone there to perform that service. To accompany means, in one sense, to do that background thing--to provide a cushion on which the performer can ride to the successful end of his or her task. CareGiving, for the most part, is a bit like that. Most friends, when they see me, ask, "How's Peter?"---a few add, "and how are YOU doing?"

In another, deeper sense. though it means to go, or stay, or be connected with someone. To provide safety, as the volunteers did who traveled to Guatemala to stand quietly beside persons who were political refugees, so they wouldn't be killed. To support another person, not only physically, but also emotionally and even spiritually. In this sense, especially, CareGivers are "accompanists" to the loved one they care for, whether on a day- to- day, hands-on, basis or from a distance.

CareGiving can be exhausting--and incredibly rewarding; frustrating --and fulfilling; a pain in the neck, a tear in the eye,-- and a great joy. If you were giving me a true/false test, I'd have to mark "all of the above". Some do it for pay, and others out of a sense of obligation. Most do it , at least in some degree, for love. And very few ever imagined in their wildest dreams that they would be adding the title of CareGiver to their list of lifetime roles. Yet it happens to mothers, fathers, children, siblings, and spouses. It may happen to young adults , or to their Baby Boomer parents whose own parents are aging, and to elderly partners, who find they must learn to care for each other in ways they never imagined when they made their committment to each other.

we experience losses of all kinds:

of companionship, our future together--a partner in activities

of freedom--we are tied to med schedule, worry re: falls, etc

of a help-mate--we learn new skills, assume more responsibility

of time to relax--we are "always on call", are physically exhausted

we learn to expect the unexpected--it's hard to plan ahead

we develop coping skills--dreams, poetry,journals, support of friends

we may lose our economic security

we must develop new skills/ resources for care:

we learn about the disease and ways to combat it, medicines,etc.

we learn how to work the healthcare system, advocate for CP

family relationships change :

burdens may be shared unequally

relatives may criticize our decisions

we have physical and emotional stress , "stress by association" about:

driving

retirement

changes in sexual relationship

difficulty in maintaining relationships with friends

dealing with depression in CP and self

anxiety (for both) re: CG's health

mental changes in the partner (may be harder to deal with than physical)

Camilla Hewson Flintermann, retired family counselor, co-owner of the CARE list for CareGivers of Parkinsonians

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