October 23, 2019 by Jean
Lately, I’ve been struggling to find the right balance between caring for a good friend with a serious degenerative illness and caring for myself. This friend and I have a long history of supporting one another through health crises. She traveled hundreds of miles to be with me when I had surgery to remove an ovarian tumor in the late 1990s, staying for a week until I was released from the hospital and had a support system in place at home; and it was she who took on the difficult task of calling my family and friends after the surgery to tell them I had cancer.
Like me, my friend is aging alone, without spouse or children or any family nearby, and I am her primary medical support person. For several years, as her health has deteriorated, I have been taking her to all her medical appointments. Her medical providers all know me and treat me as part of her care team. She stopped driving about four years ago and has become increasingly housebound and socially isolated, and I’ve recently committed myself to a scheduled date every two weeks for getting her out to do something outside the house. (I live an hour away from my friend, so I am not a daily presence in her life.)
I don’t feel overburdened by this level of support for my friend; the problem comes from her increasing needs for help and our very different personalities and responses to difficult situations. I am an upbeat, glass-three-quarters-full type who can find a silver lining in almost any dark cloud. My friend tends to emphasize the negative, and there is plenty of negative to focus on in her illness. I’m a problem-solver by inclination, and my best strategy for coping with stress is to find a workable solution and take action. My friend looks for the one perfect solution to any problem; she quickly finds the flaws in any action plan and rejects the plan because of these imperfections. Over the past several years, I have scouted out resources for things like transportation, social activities inside and outside the home, and help with home tasks she can no longer manage, only to have her reject them all.
Recently, she seems to have fallen into a downward spiral. The last few times I’ve visited her, she did not answer the door (although she knew I was coming); and when I let myself in, I found her still in bed and in her pajamas. It appears that she is no longer getting up and getting dressed on most days. I am increasingly concerned about her ability to take adequate care of her elderly pet cat or to keep her house and herself reasonably clean. Her brother, who lives hundreds of miles away and is himself in poor health, calls me several times each week to express his own concerns and to strategize; but we both feel powerless to take action. She is not legally incompetent, and no one can force her to accept help. But feeling both responsible and powerless to act is the classic description of a stressful situation, and both her brother and I are feeling rising levels of stress.
A few weeks ago, I convinced my friend to let me schedule a consultation with a geriatric care manager from a local agency that provides a much broader range of services and more flexible terms than most home health agencies do. I had high hopes for this visit; if we could get my friend set up with services to clean up one major mess in her house and provide weekly help with personal care, pet care, and housecleaning, it would make her life better and relieve some of the stress on her brother and me. The consultation seemed to go well. My friend was open in discussing the kinds of help she needed, and she liked the care manager. When it came time to sign on as a client, though, she balked, saying that she needed time to look over the service agreement and think about it. This wasn’t an unreasonable position to take, but I worried that it would lead to her finding reasons why this service wouldn’t work for her. And, indeed, her brother told me a couple of days ago that she has decided she shouldn’t sign on with this agency until she has interviewed two or three other agencies for comparison (which is something she will never get around to doing.)
My friend’s decision wasn’t entirely surprising, but it was still a disappointment. I am now left trying to figure out how to take care of myself while still providing her with support. I have decided that I will no longer spend time and energy in researching support services for her, since she always refuses to use them. Letting go of the feeling of responsibility to make her life better or even the hope that I could do so is the hard part of this decision; it will take time for me to get there. I am worried that the price of letting go of those feelings of responsibility will be distancing myself emotionally from my friend, leaving only a shell of our friendship. Another possibility is that I simply take over and hire the agency, using her funds to do so. I realized today that I am not powerless; I have her durable power of attorney, which gives me the right to take financial action on her behalf – although I think that this course, too, would do serious damage to the friendship. My final thought is to try to guilt her into hiring help by pointing out how much stress her lack of help is putting on those around her. (I honestly don’t think she has considered this, and feelings of responsibility toward her brother might goad her into action.) I am thinking I will start with the third option when I see her this week. If that doesn’t work, I will ask her whether she prefers that I take option one or option two to reduce my own stress levels. I think it’s time for some tough love.