Caring for Your Aging Parent During a Slow Decline
A writer describes hurdles she faced as her mother gradually lost her independence
Given her long career as a biological scientist and hospice consultant, Melanie P. Merriman thought she was well-prepared to deal with her mother’s twilight years. But as her widowed mother aged from 78 to 94, Merriman found that the end-of-life scenarios she dealt with in her hospice work hadn’t prepared her for her mother’s gradual decline.
“There exist no training classes for adult children caring for aging parents, and none for our overly independent parents to learn how to accept our care,” writes Merriman, 64, in her instructive new memoir, Holding the Net: Caring for My Mother on the Tightrope of Aging.
Next Avenue recently spoke with Merriman about the challenges she and her sister faced while caring for their mother, who died in 2010.
Next Avenue: Despite expertise in the fields of hospice and palliative care, you described caring for your mother as 'humbling.' Why?
Melanie P. Merriman: Because of my background around health care providers, I felt I had knowledge, and knowledge is power. I thought I’d know what to do. What I hadn’t thought about was the big difference between someone who’s literally dying, and someone who can no longer live well on their own without assistance. Those are two very different things.
What did you find yourself most unprepared for?
My mother’s resistance to accept my help or anybody’s help. From my perspective, she wasn’t being logical. I’m still learning how much of that probably came from changes in her brain, progressive cognitive impairment that’s so slow. Also, I was trying to honor her autonomy while at the same time wanting to keep her safe.
What did you find most bewildering along your mother’s journey from independent living to congregate living to assisted living and then hospice care?
Getting a clear understanding of what the services would be, and matching those up with my mother’s needs. It was relatively difficult to get information about the costs.
You think help with taking pills, for instance, is part of assisted living services, but it’s an additional cost. People think it’s assistance with medications, baths and dressing. You can get those services, but they’re not part of the monthly fee. Assisted living, to me, should be called 'supervised living plus a meal or two.'
You need to ask questions, because it will be different from facility to facility.
What do you feel are the best options out there?
The health care system is not very aging-friendly. They deal with a 90-year-old broken hip the same way they deal with a 32-year-old broken leg. There’s no coverage for home assistance or a geriatric care manager.
Where I think there’s a lot of hope is in community-based care through the Village to Village Network, which brings together seniors and people who want to help, so it’s safer for people to stay in their homes. There are also more senior living options on a sliding scale, even for those who don’t have the money. If you Google the National Association of Area Agencies on Aging, and put in your ZIP code, you can find the agency in your area.
When your mother was 87, a friend in her condo complex wrote you a letter expressing concern. Why did it take four more years to move her to an older adult facility?
My sister and I started looking in 1987, but none of it felt urgent at the time. That was one of our biggest mistakes. You have to do something before you feel the urgency. If your mother’s friends say they’re bringing her meals, you’ve got to start doing something then. I saw that letter as a warning flag, but I should have seen it as an alarm.
We thought we had time, but over that time, my mother continued to decline. When people get less stable on their feet and have trouble reasoning, they start to cling to what’s familiar.
If they want to age in place, they need to be in place before they really start to age.
You worked with a geriatric care manager to help persuade your mother to move. You tapped a doctor to convince her to stop driving. Why did you enlist outsiders?
I had a wise friend who kept saying, 'You don’t want to be the bad guy. You want to be the supportive daughter. You need professionals to tell the truth.' The value of professionals cannot be underestimated. They do this all the time and have resources at their fingertips. An outside voice who wears a cloak of professionality can carry sway that I, as the daughter, cannot.
At several points, you masked the truth from your mother as you researched options. Did you gain a new appreciation for the white lie?
Yes. In this circumstance, absolutely. I wanted to protect her. This was very difficult for her; she was suffering. I also did it to save myself. There was frustration and futility in going over it and over it when it was clear that she wasn’t thinking clearly.
As your mother became less self-sufficient, you constantly had to weigh her right to independence against your concern for her safety. Any advice for those facing that juggle?
This is the tough one. Your parents have earned their autonomy and independence. They’ll cling to what they call independence, but what I call 'the familiarity of the lives they know.' Anything new gets scarier and scarier.
Part of me thinks maybe they understand what they’re doing. Maybe they’re saying, 'It’s OK if I fall down and that’s the way I die; I’d rather do that than be in a nursing home.' It’s so hard to know.
When our parents are in decline, it can feel like we can never do quite enough. How can people safeguard against guilt?
Be clear with yourself what you can do and what you can’t. Try hard to look at the situation realistically and see where you are having a terrible impact on your own life, health and family, and stop short of that.
After your mother passed in 2010, you described a sense of peace. What most contributed to that feeling?
My sister and I did the best that we could given the information we had and our frailties as human beings. And my mother died contented. We ushered her out in a dignified and comfortable way.