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Note: The following was published in our monthly column "Living and Loving: Elder Care in the 21st Century" in Gate House News' Concord Journal
Aging has changed during the past generation. From an elderly woman choosing to live alone in Belmont, MA rather than enter assisted living, to a Concord wife with mild dementia struggling to provide senior care for her ailing husband, to a Bedford couple in their 90s and still home with outside help, we see many more families with elders who have moderate to significant needs. Those terms of care can stretch into years.
This requires a change in attitudes and expectations for families to reduce their stress. It’s necessary to reset our expectations and assumptions that result from such widespread changes. Let me illustrate with a story.
Ted and Mikie
Ted and Marian – everybody called her “Mikie” – retired to Cape Cod in the 1970s. In 1984, at only age 60, Mikie was diagnosed with terminal cancer. Its progress was quick: she received home medical care from visiting nurses, but within six months, she died with her family at her bedside.
Home care aides soon returned to the house, however. Years earlier, a stroke had left Ted able to walk with a cane, and even to drive short distances, but his mobility was limited. Now a widower and alone, he declined noticeably and was in a wheelchair within a year. So after a family conference, the home care aides returned: twice daily visits for meal preparation, medications, grooming, hygiene, and related needs. Ted spent his days in his wheelchair watching TV reruns. His adult children, with jobs and families off the Cape, visited often and managed his care from afar, but were sometimes unaware of changing needs or significant events until they came for visits and read the care log kept on the kitchen counter. They found that the sustained high level of care and time they had given during Mikie’s illness was impossible to sustain forever. Sixteen years later in 2000, a daughter residing in Vermont moved Ted to a nursing home a few miles from her house.
Ted and Mikie were my in-laws, and they represent the different needs of what I call the 20th Century and 21st Century home care clients. This is, of course, a simplification, but it helps to frame the discussion of the changes today’s families face, compared to those of earlier generations.
It is usually impossible to deliver the level of care – in terms of hours, energy, dollars, and overall family resources – that Mikie received when a parent is in Ted’s situation. Part of the path to finding a workable solution is understanding what is possible for you to deliver given your current life situation. This involves a balance of understanding the sacrifices you are willing to make, the limits you need to set, and the help that is available from others.
Sacrifices – Many of us are surprised when we realize that we will have to devote time and money to the care of our parents, though it’s not as if we hadn’t noticed they were getting older. But unlike raising our children, we often find ourselves unprepared mentally for the significant work before us on behalf of our parents. Make a mental adjustment – like other parts of family life, this will require devotion of time, money, and emotional energy, but it can be very rewarding.
Setting Limits – the flip side of being unprepared is to assume the burden of relieving all “the thousand natural shocks that flesh is heir to,” in Hamlet’s words. We in the sandwich generation can run ourselves ragged – and the devotion of many adult children is often touching – trying to help our parents. But we cannot stop time or its effects, or meet every need or request from a parent. In the hurly-burly, it is sometimes useful to step back and examine your own life, to understand what resources you have, and realize that you can give a certain amount – but then you must stop. This is not neglect, but simply a fact of life.
Ask for Help – family, volunteer, or professional. This can be difficult, but even if your parent prefers that you or your siblings cover every need, it may not be possible. As they say in an airplane, “Put on your own oxygen mask first.” You are no good to anyone if you collapse in exhaustion. Ask a friend, or a local faith community. And if financial resources are available, use them. They were saved for a rainy day, and if that time has come, be thankful for your family’s foresight and use the funds.
None of this is to suggest that achieving balance is easy. But understanding that your parents may need your help almost as long as your children do is a mental adjustment many of us need to make. Understanding the territory and the choices can provide some much needed stress relief.