When elders won’t listen, caregivers must make hard choices

She just wouldn’t move.

My sisters and I had a meeting with our mother to talk about her living situation. It was hard to care for her when she lived in another state.

After two strokes, she had trouble walking. She needed help with meal preparation and bathing. She got some assistance from friends, but it was a struggle.

We were so relieved when our mother, 74, agreed to move in with my older sister, who had purchased a split-level home, in part to accommodate the possibility of our mother living there. We were making plans to hire a long-term care aide.

So we set a timeframe for her to move. But the time came and went, and still she refused to leave her home.

We pleaded. We fussed. We discussed what could happen under various scenarios if her health declined further. There were a lot of “what ifs,” one of which was: “What if there is a fire? How would you get out?”

“I’ll be all right,” she tried to reassure us.

When we pushed too hard, my mother would shut down.

And then our worst fear happened. An early-morning fire broke out in her home. She sustained third- and fourth-degree burns over a third of her body.

My mother held on for more than two months, surviving multiple skin-graft surgeries. She was cared for by an amazing team of medical professionals at the Nathan Speare Regional Burn Treatment Center at Crozer-Chester Medical Center in Pennsylvania. We had discussed where to move her for rehabilitation after her hospital stay.

Then on Memorial Day, my mother died.

There are times when the guilt becomes so heavy. Should we have pushed even harder? What could I have done differently to get her to recognize that she needed more help and could no longer live on her own?

But my mother was strong-willed, competent and in her right mind, so we couldn’t force her to relocate. And honestly, since she and I hadn’t been very close, I was afraid of losing her again if I pushed too hard. It was her mother, Big Mama, who had raised me. But over the last few years, my mother and I had reconnected. She was a different person to me after the strokes. Gentler. Repentant. We were in a good place. I wanted her to let me help her. I wanted her closer.

Like many seniors, my mother stubbornly clung to her independence even though it put her in harm’s way. Nearly 90 percent of people over 65 want to stay in their home as long as possible, according to AARP.

Ideally, it is better and can be more cost-effective for people to age in place as long as they are physically able. Yet there may come a time when they can’t stay.

As a caregiver, it’s scary when you get calls about falls, or a pot left burning on the stove, or a home that was once pristine but now is grimy and dirty.

I’ve spoken to a lot of caregivers who are frustrated, some angry, others worried and exhausted from trying to assist an aging parent — sometimes both parents — from afar. Even for caregivers living in the same area, it can be overwhelming running back and forth. Even when there’s money to hire an aide, some people’s parents stubbornly refuse assistance.

I was speaking recently to a group of seniors, and I asked them to actively plan for the possibility that they won’t be able to stay in their homes. Don’t be stubborn, I told them. Think about the toll on the caregiver — and your relationship — when you refuse to move or won’t let anyone come in to help.

For caregivers, I can’t tell you any more than this: Keep advocating and pushing for your parents to move if it’s necessary. You can easily find tips from AARP, caregiving.org and other elder-care resources and experts on how to talk to an aging parent about transitioning into another living situation.

One of my favorite songs is “Stand” by gospel artist Donnie McClurkin. “What do you do when you’ve done all you can and it seems like it’s never enough?” he sings.

If you’re a caregiver, don’t bow. Don’t give up even when there’s nothing else you can do.

After you’ve done all you can, you just stand.

(c) 2014, Washington Post Writers Group

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