January 6, 2020 by Jean
The phrase “to care for” has two distinct meanings. One is about warm emotional attachment to another person, to care about them. The other is about our actions to take care of another person, to be a caregiver. As those we care about age, the odds increase that “caring for” will also become caregiving.
For the past five years, I’ve been playing a minor caregiving role in the life of a good friend in declining health, taking her to all her medical appointments. This was an extension of the medical support we’d provided one another throughout our decades-long friendship. Almost thirty years ago, I traveled from Pennsylvania to Boston to be with my friend during a major surgery and subsequent hospitalization. A few years later, she returned the favor, traveling from Maine to Pennsylvania and spending a week providing me with practical and emotional support during my own surgery. In the past five years, however, what used to be mutual support has become one-directional caregiving.
During the past few months, my caregiving role has become much larger as my friend has declined precipitously from moderate cognitive impairment into full-blown dementia. I have her durable power of attorney and have taken over responsibility for all her finances. I am the one who found a nursing home placement for her when it became clear she needed that level of support. I’m the person whom the nursing home calls to schedule care-planning meetings or when my friend’s disruptive dementia-related behaviors create a problem. Suddenly, the care she needs has come to loom very large in my life.
Not surprisingly, these changes in my caregiving role have been very stressful. Research on stress tells us that the most stressful situations are those that combine high responsibility with low power, a combination that characterizes a lot of caregiving for aging friends and relatives. My friend, like me, is aging alone, without a spouse/life partner, children, or family nearby. This means that, as her closest friend and the person with her power of attorney, I feel a great deal of responsibility for her care. But her situation is heart-breaking, and there is little I can do to make it better. My lack of power is magnified by the fact that my friend has always made life decisions very differently than I do, and she rejects many of the suggestions I make for ways to make her life a little more comfortable.
I know that I need to take care of myself if I’m going to continue taking care of my friend, which means that I need to find ways to manage the stress. I generally pride myself on my good coping skills, but this situation has been very challenging. So far, I have identified three coping mechanisms that I think can work for me:
- The first level of coping for me is to deal with the physiological manifestations of stress – all that adrenalin that makes me feel as though my gut is churning and that leads me to clench my teeth and to overeat. My strategy for dealing with this is a version of mindfulness, trying to take a few moments to focus on one or a few sensory pleasures – the beautiful sight of a rosy winter dawn or of snow-covered trees, the scent of lavender that is released as I shovel the snow along my “Lavender Walk,” taking the time to savor the taste of a favorite food.
- The next level of coping involves trying to keep my sense of responsibility for my friend within bounds. I keep reminding myself that “I’m doing the best I can,” and I have been working to mobilize a team of friends and relatives who can share some of the responsibility. My friend’s brother in New York and one of her college friends who is a geriatric nurse practitioner have been particularly helpful sources of support from a distance. I want to limit my visits to my friend to one a week, so I am also trying to mobilize some of her local friends to make a commitment to visit her at least once a month. My goal is for her to have company at least twice a week without me having to do all of it.
- My best coping strategy is usually what social psychologists call “instrumental coping,” a problem-solving approach that tries to reduce stress by doing something about the situation that is causing the stress. Although my ability to change my friend’s situation is almost non-existent (beyond what I have already done to move her into the highest quality nursing home I could find), I am finding that I can reduce my sense of powerlessness by focusing on the bigger picture of care for those who are aging alone. My involvement with my friend’s care has given me an up-close look at all the ways that long-term care is not well designed for those aging alone (more about this in a later post). I am working on a proposal to make a presentation on this issue to the leadership of the nursing home, with hope that this may lead to some changes in policies and practices.
I know that my life is unlikely to return to the relatively carefree state that I have enjoyed since my retirement. But, by acknowledging and addressing the stress that my friend’s situation creates for me, I hope to keep that stress to manageable levels and protect my own health and happiness.