Adventures at Midlife

One of the darker tasks associated with the midlife years is coping with aging parents. I know my siblings and I were not as well prepared as we thought we were when faced with Mother’s two-year decline and death several years ago. Fortunately we had a sympathetic home health and hospice organization that provided some splendid care for her and some much-appreciated counsel for us when it came time to make the hard decisions.

For those of us in such straits, the NYTimes has just launched an excellent and well-received blog, The New Old Age, featuring writer Jane Gross, who recently experienced the death of her elderly mother and who writes on a variety of eldercare issues, including a recent post on what she’d do differently.

All of these mistakes would have mattered less if the trajectory of my mother’s decline had been different [said Gross]. But that trajectory, alas, is unknown and unknowable but for its certain ending. So every decision we made — residential, medical, financial — was a crapshoot that changed the landscape for the next decision, usually by limiting options I didn’t even realize we had.

Like Gross, I actually regret some of the treatment we forced on Mother at the end, especially a protracted and exhausting regime of radiation treatments for endometrial cancer (one fairly small lesion) that left her permanently weakened. After the final in-hospital treatment, she never left her wheelchair and, following a series of TIAs, gradually refused to eat.

This is when caring for her became terribly difficult. Mother, at 92, had left clear, signed instructions that she wanted no heroic measures at the end, including intubation of any kind. That may have made it easier for her, but it was nearly impossible for us. Watching her die was gut-wrenching, and had it not been for the sympathy and expertise of the hospice workers, I’m not sure we could have lived through it.

Gross also regrets letting her mother leave her home early on for a retirement complex, since it made her ineligible for home care. We did not have that restriction when Mother moved out, and she continued to enjoy the same caregivers right up to the end. So it might be worth checking Medicare and insurance policies to determine what care might be available in what settings.

Most importantly, I don’t think very many of us are prepared for the staggering costs of end-of-life care. Mother’s insurance, savings and Social Security covered much of her expenses, but it was my brothers’ contributions that made it possible for her to live in a far less-Dickensian facility than some of her elderly friends. And it prompted me to sign up for a long-term hospital care policy offered by my workplace.

This is grim stuff, but it needs to be talked about. And planned for.