THE ART OF CAREGIVING WITH AMY O'ROURKE

ART OF CAREGIVING

with Amy O’Rourke

America’s Advocate for Caregivers and Families

The holidays are here: food, fun and connecting with those we care most about. The chance, finally, to be together once again. And an opportunity for adult children and aging parents to have what can be some of life’s most important and meaningful conversations. Knowing that we need to have these conversations is one thing. Growing Bolder’s aging and care management expert Amy O’Rourke shares some advice from her new book, The Fragile Years, Proven Strategies for the Care of Aging Loved Ones for her advice on beginning the conversation.

I’ve worked with many families overwhelmed by the complex and emotional decisions they face when a previously healthy and self-sufficient parent becomes dependent upon them. That is why I encourage you to prepare for a parent’s fragile years by talking to them about their preferences for care.

Eighty percent of Americans say they would prefer to die at home, but only 20 percent are actually home when they die. Sixty percent die in acute care. Twenty percent die in nursing homes. Yet, in our experience, the best place for clients to spend their final hours is at home with loved ones.

While it might be a difficult conversation to have when your parent is still independent and doing well, you will be very glad to have prepared for the fragile years ahead and all the challenges they bring.

I recommend having these discussions when your loved ones are still in good health and clear-minded, but I know that isn’t always easy. To find out what your parent wants, you don’t have to pressure them. I had a friend whose parents resisted talking about how they felt about a Do Not Resuscitate (DNR) order, so one day he mentioned to them that a person of very advanced age had gone in for knee surgery and died of an infection while in the hospital. His father’s response was, “I can’t believe he went in for that surgery at his age. Hadn’t he ever heard of ‘death by hospital?’”

That told his son all he needed to hear. His father was definitely in favor of a DNR, and that comment led to an extended conversation about setting up the order for him. I recommend this indirect method of broaching delicate topics if your loved ones resist talking about them. Talk to them about other people and the decisions they’ve made regarding Do Not Resuscitate orders in living wills, and then ask your loved one for their opinion or preferences.

My experience is that most older adults want to do the things that make them happy later in life, whether it’s reading novels, having a bowl of ice cream every night, taking walks, or sipping wine while watching movies. If they can’t do the things that make them happy and are faced with being confined to bed or a wheelchair, they may not want to prolong their lives under those conditions.

Knowing how your parents feel about having a DNR order in place is particularly important. If they have a serious medical problem at any point, one of the first things you will be asked by the EMTs or the ER nurse is, “Do they have a DNR?” This is not a cut and dry matter. It is a quiet secret in the emergency medical field that older people often do not survive an attempt at resuscitation. And, if they do, they often sustain serious injuries.

Many people also think that if they have a living will, they’re all set. But that only works if two physicians agree that you have a terminal diagnosis. So, for example, if your parent, who is fragile and has memory impairment, slips and falls and incurs bleeding in the brain, the ER docs and surgeons will likely want to go in and do a procedure to stop the bleeding. Because your parent didn’t have a terminal diagnosis, all efforts were taken to prolong their life. But that is a major surgery requiring anesthesia, which can make memory impairment even more severe and seriously impact quality of life. The doctors will argue that if they don’t repair the bleed, the patient might have a stroke. But no one really knows what will happen with the operation, because they don’t do medical studies on people in their eighties. The saying is that those in that age group are “evidence free” because clinical trials and studies are only done on much younger people. In my forty years of working with older people, I’ve never had someone say, “I want to spend my final years incapacitated in a nursing home.”

The tough decisions come when there is no terminal diagnosis, but you have to decide on medical intervention. With patients in their eighties, there is a 90 percent chance that surgery will result in a decline in condition and quality of life. The health care system, which is focused on fixing, curing, and treating for a profit, will push you to “treat for a cure.” But they make money doing procedures, and most of the time, they will not answer the question: “What would you do if this was your parent?” Or other questions such as these: “Will the person still be able to walk? Go to the bathroom alone? Eat alone?”

While it might be a difficult conversation to have when your parent is still independent and doing well, you will be very glad to have prepared for the fragile years ahead and all the challenges they bring. If they do not have a living will and haven’t documented their preferences for funeral services, internment, and asset distribution, you should encourage them to do that.

For more Caregiving Tips from Amy O’Rourke read The Fragile Years, Proven Strategies for the Care of Aging Loved Ones