1: The Caregiving Labyrinth

1: The Caregiving Labyrinth

From Chicken Soup for the Soul: Family Caregivers

The Caregiving Labyrinth

A Note from Joan

I’m often asked which interviews have been my favorites over the years, and one might assume that I would point to presidents, world leaders or celebrities. However I have always been fascinated by those who study the human condition; medical experts who help us understand how our bodies work and cultural observers who help us understand what makes us tick.

I have always enjoyed interviewing Gail Sheehy, bestselling author of 15 books, and world-renowned for her revolutionary Passages, which was reprinted in 28 languages and named by the Library of Congress as one of the 10 most influential books of our time. Gail literally changed the way millions of people look at their lives. In her history-making books, she has examined how men and women move through the stages of adult life from adolescence into their seasoned years.

I had an opportunity to sit down with Gail Sheehy to talk about her latest book, Passages in Caregiving, in which she is helping a generation to navigate caring for loved ones. With so many people living longer than ever before, Gail revisits the stages of adult life to map out this new frontier. In this book she is not only a cultural observer, she has been a caregiver herself for years.

Joan: Gail, you became the caregiver to your husband Clay Felker when you were both in the prime of your careers and he was diagnosed with cancer. Tell me about the day you learned he had cancer.

Gail: Well, one day I got the call. Cancer? My husband has cancer? We don’t expect it. No one is prepared for it. We don’t know how long it’s going to take. I had nine months to prepare for the birth of my child. I had about nine hours to prepare for the dependence of my husband. They told me I had a new role: caregiver. Again? We’re all going to have this role—this is the big passage for boomers today.

All of a sudden you get a call that changes your life, diverting all your hope and energy to an entirely different priority. It’s a call about a fall, or a stroke or a cardiac arrest. Or maybe it’s about your dad who ran a red light and hit somebody but doesn’t quite remember what happened. This call throws most of us into shock and denial and a frenzy of learning how to take charge. We don’t know the medical lingo, we have no idea how to navigate our way through the patchwork of care alternatives, insurance regulations, Medicare rules, or the conflicting advice of traditional doctors versus holistic practitioners. And we have no concept of how long it will take, how much it will cost, or how we will pay for it.

No one really expects it, but just about everyone has been—or will be—expected to provide unpaid care, for a sustained period, to someone close to them. We need help in learning how to take charge, create a circle of care, outwit our fractured health care system, and give a loved one a safe and stimulating life without sacrificing our own.

Joan: You were a caregiver to Clay for 17 years. What did you learn from your experience that you want to share with others now?

Gail: I think caregivers desperately need someone to pull them together and understand how vital and how honorable and generous a role we perform. The biggest hurdle is most people who do this don’t identify themselves as caregivers. Women especially say, “Well you know that’s just what you do. I’m a daughter, you know, it’s just what I’m expected to do. It’s what I want to do.” But in fact today it’s become a professional-level job.

Joan: This is a crisis facing millions of Americans today. What should people be doing to try to prevent being sideswiped by this?

Gail: The best thing that you can do is to have a family meeting before there’s a crisis. Have the meeting with your brothers and sisters primarily. You want to get the conversation started before the tension of “We’ve got to get hospitalization for Mom and Dad or we’ve got to figure out what treatment”—it’ll be so much better because when you’re under tension and somebody’s got to make a decision, you’re likely to go back to squabbling like five-year-olds.

Joan: It can be very difficult to get your parents engaged in this conversation because they don’t want to think about their mortality. And yet it seems critical that you get this information, so that you become the owner, so to speak, of the information, and have it when the time comes that you need it.

Gail: I think the way to persuade parents is to say, “We want you to be independent as long as you possibly can. And the key to that is to know exactly what you want done and what you don’t want done. What kind of hospital you’d like to go to, and who you want as your doctor.” So make it an active kind of discovery for how to get your health caregiving situation in place and get all your paperwork in place for when your loved one might need a little bit more help.

Joan: There are so many important documents that you will need like advanced health care directives and powers of attorney; it’s complicated and it’s intimidating. You talk about a growing community of senior advocates who can help you through this maze; how so?

Gail: I think the greatest help, if you could possibly afford it, is a care manager, a professional geriatric care manager, particularly at the beginning of an emergency. If you have, or husband has, in my case, a cancer diagnosis and you’ve got three different doctors giving you conflicting opinions, you don’t know how to decide on the treatment. Everything has to be decided in a hurry. You are entering into a new world. And if you have a care manager, even for the first few days or week, to help you figure out this new language and new world you’re in, it may be the best money you’ve ever spent.

Joan: You call this new world of caregiving, the labyrinth. What do you mean by that?

Gail: My original book, Passages, was about the stages of the adult life—they are linear. There’s a stage and then there’s a passage when we need to change again and there’s another stage. We kind of wrap up the tasks at the end of each stage and move on. It’s all very nice and neat.

Caregiving is more circular. You go around and around the circle and you come back to the same place again and again. A labyrinth is one path that takes you around the circle and you go through quick twists and turns that you didn’t expect, just like caregiving. But it gets you to the center and the center is when you finally acknowledge and accept that your loved one is not going to return to the same independent person he or she once was. And that begins your coming back. And it’s in coming back that the caregiver has to begin to find his or her own transportation to joy, your own way of living a new kind of life after this passage is over.

Joan: Tell me about the stages you go through in this labyrinth of caregiving.

Gail: The first stage is Shock and Mobilization. You get a call that your mom’s fallen, your dad’s had an accident or your spouse has a frightening diagnosis. Who to call? Where to start? It’s a roller coaster—you may be up and down for weeks or even months.

Then there is The New Normal. You realize, perhaps for the first time, you have a new role—family caregiver. This isn’t a sprint. It’s going to be a marathon. You are living with a new uncertainty and you’re not going back to the old normal.

The next stage is The Boomerang. Everything has settled down into a new normal routine. It’s been months, maybe a year or more. You’re handling it all and thinking “Okay, I can do this,” when BOOMERANG! A new crisis erupts. You need to call a family meeting. Who else can help? You need to start thinking about how to take care of the caregiver—that’s you!

There is the Playing God stage. You’ve become very good at caregiving by now. You’re the only one your loved one trusts. You believe you’re the only one who truly understands what he or she needs. You’re seen as heroic. You’re playing God. But you know what? We ain’t God. We can’t control disease or aging. And if we keep trying we’ll be overcome by stress and fatigue and come to a dead end.

And that is the I Can’t Do This Anymore stage! So you were convinced you could do it differently. But a few years into it you break down in tears and total fatigue. You’ve given up so much. You absolutely must come up for air or you’ll go down in despair. Call for help! Start taking at least one hour every day to do something that will give you pleasure and refreshment. Your loved one also needs some time with other people who offer stimulation of a different kind.

And that leads to the Circle of Care. You need to create a circle of people who will assume some responsibility for aspects of care. Let members of your family and friends who have not been involved know that you have reached the end of your rope. They may assume you’re handling it all. Even long distance, they can definitely be helpful. And don’t be shy about asking for assistance from neighbors, coworkers and your community. A professional care manager can save your life.

This is when you enter the Coming Back stage. At the seventh turning, you begin coming back. It is clear now that your loved one is not going to get well and will become more and more needy and dependent. You are approaching the center of the labyrinth. This is where you must begin the process of separation. It is a slow and painful process, but the other way is to lose yourself and go down with the person you’re caring for. That would be a double tragedy.

There is life after caregiving. What were your lifelines before caregiving? You must have some transports to joy? Pick them up again. They will lead you out of the labyrinth.

And then you are at The Long Goodbye. This is the last turning. Inevitably, there will be times that you will likely feel: Why can’t you die? Enough already! Then, of course, you’ll feel guilty for thinking such a thing. But it is entirely human and predictable.

No one can answer your most burning question: How long? It’s important at this turning to have end-of-life conversations. Encourage your loved one to talk about his fears and wishes and goals. What kind of activities might give him or her pleasure? And what kind of medical interventions does she want—or want stopped? Hard as it may be, follow your loved one’s wishes. This is his or her death, not yours. You are on a different journey.

Afterlife of the Caregiver. And then, suddenly, it’s over. Your loved one has passed on. You have completed the labyrinth of caregiving. Now what? Maybe you’ve forgotten who you were before. You’ve been consumed for so long by caring for someone you love. You have given of yourself and done a beautiful thing. After the first months of mourning, grief will come out of nowhere when you least expect it. Don’t sit around and wait for depression to set in. Pick up your passion—whatever you do where time passes and you don’t even notice—and follow it. It will lead you on a new path. Look at it as an adventure! And God bless you.

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