“This last month has really been hell, no one but me to make every decision,” says Maurene, fifty-six, who gave up sixteen years as a Wall Street analyst to move back to London to be with her dying mother. “The responsibility of taking care of her is enormous. It still scares me. I don’t feel equipped in any way to deal with this. I seem to hurtle from one “terror” to the next.”
Caring for an aging or ill parent is something none of us expects to do – we associate life with our parents. But suddenly we are there, taking care of the ones who diapered us and shunted us to school and sports; here we are now, diapering and transporting them to doctors’ appointments. It doesn’t seem right and it doesn’t seem fair; it seems impossible. Whether we got along or not, the shock of being responsible for the welfare of a parent is unsettling. Says Pat Sussman, implementation director of a social health maintenance organization, “We don’t want to think about our parents getting old and dying because then there’s nothing between us and death. We’re next. And we don’t want to look at the psycho-emotional implications.”
It is not as important that we are daughters or sons or parents but people in new, caring relationships. Parents are at the mercy of their caregivers, knowing in their hearts that they are burdening their children and throwing their lives off course. Adult children are ill at ease and confused, scared because of the implications of long-term illness. They must address these alien emotions while finding practical solutions to the problems at hand, learning to give graciously so that parents don’t sense resentment or hostility. Research is inconclusive, but one study reported that getting support from an adult child is beneficial at moderate levels but psychologically harmful at high levels. Yet parents who didn’t expect much support and then got it cited higher levels of well-being.
Once crisis hits, it is more difficult to get solid footing. We can gain definite advantage by educating ourselves ahead of time about community resources, financial and legal issues, health and fitness in the elderly. We can address warning signs such as poor hygiene or eating habits, difficulty walking, being suddenly aggressive or argumentative. Even so, nothing can truly prepare us for the emotional challenges: If we are not in denial, we must plunge ahead.
According to the Older Women’s League, one in five caregivers have a parent living in his or her home. Although it may not always be the best course of action, sometimes it is the only acceptable one. Despite good motivations, unexpected tensions can arise. There is confusion, stress, and a mix of needs and beliefs as we re-form extended families without the traditional stay-at-home mom. But in so doing, we may also find ways to open our hearts.
We live by heart and by hearth. Although living with an ill parent is by no means feasible or advisable for everyone – there are other family members to consider as well as finances, space, privacy, lifestyle differences, and unresolved issues – it is a chance not so much to change roles but to deepen them. There is no shame in not being able to live together: we broke off into our own worlds, and others depend on us to maintain them. What matters is to give dignity and attention to a parent’s final years, even if that means unsettling our lives, giving up for a time some of our adult dreams.
In caregiving, we must come to accept the direction life has taken if we are to do our best. It is important to keep all options open, to never say never, for we cannot know where fate will take us and what decisions will be required. Over distance, it is hard not only to plan for care but also to monitor it, especially without help. In some ways, distance also makes it harder to let go, because we never had a tight grasp. But even these emotions are manageable in time, for it is a caring heart that sees us through.
- Involve your parent in as many aspects of planning as possible. Listen to, respect, and have compassion for, his or her desire for autonomy and control. Work together to set up a flexible care plan, and remember that it can be changed when needs dictate.
- Monitor or curtail a parent’s activities that pose safety risks, such as cooking, driving, or operating machinery.
- Monitor whether your parent is eating and exercising properly, getting enough liquids (hydration is important for peak mental and physical functioning), maintaining social contacts, negotiating stairs safely, and dealing with other housing elements competently. Assess housing features that may need modification.
- Find out where legal and financial documents are kept and who the professionals and advisers are (legal, financial, medical). Assess finances, both yours and your parents’, so that if a crisis hits, you have some idea of what options are possible.
- Educate yourself about resources in your parent’s community; talk to professionals early on to learn what options, such as housing and in-home support, are available. Sometimes there are waiting lists, especially for the better nursing facilities or retirement communities; you may want to put your parent on those lists as a precaution.
- If your parent is uncommunicative, consult a legal or financial professional on your own to learn your options. Bring in a professional or an objective third party if family strains prevent calm, rational discussions.
- Find a support group, whether at work, through a local hospital, or on the Internet. Even listening can be enlightening and comforting.
- Use the Internet to educate yourself about a particular condition or disease, and network with professionals and other caregivers on-line.
- Discuss possible living arrangements before a crisis hits. Be realistic about what it would take to live again with your parent, in her house or in yours. What society may tell you is proper may not be the best situation in your particular case.
- If you live long distance, call regularly. Set up a network of neighbors, family, and/or professionals to monitor your parent and report to you.’
Reprinted with permission, all rights reserved. From “Caregiving: The Spiritual Journey of Love, Loss, and Renewal,”
John Wiley & Sons. From Chapter 10.
Beth Witrogen McLeod