The Eight Labyrinths of Caregiving by Gail Sheehy
Friday, 12 August 2011 09:10
Gail Sheehy’s
The Eight Labyrinths of Caregiving
Author Gail Sheehy will be our keynote speaker at our Sept 26 KUDOS for Community Caregivers Awards Breakfast at the Mason Inn. We hope you’ll join us as Gail shares more of her insights about caregiving. Gail will sign copies of her books at the breakfast. What a thoughtful gift for siblings, children, and friends! Please join us!
THE EIGHT LABYRINTHS OF CAREGIVING
The caregiver’s journey is different. It does not proceed from stage to stage in a neat fashion. It is definitely not linear. It feels like we are going around in circles, thinking we have resolved a crisis only to have it return or be superseded by a different, unexpected crisis…A maze creates chaos. A labyrinth orders chaos. We cannot get lost. However, the path is not visible, nor is it predictable—and that reflects our journey as caregivers.
—Gail Sheehy from Passages in Caregiving
I. Shock and Mobilization
Your entrance to the labyrinth of caregiving starts with Shock and Mobilization. You get a call that your mom can’t be found, or your dad has been rushed to a cardiac unit, or your spouse has a frightening diagnosis. Where to start? Who to call? You mobilize. You start sprinting—grabbing for answers—it’s dizzying. Time speeds up and you are working off adrenaline day and night.
What to do: Give yourself ten minutes to sit in the dark. Breathe slowly, deeply, from down in the diaphragm, hold it, and slowly exhale. To override your racing thoughts or mind chatter—typically four hundred words a minute—focus on one word or phrase or mantra. Or try a statement of gratitude: Thank you, God, for this day. Breathing is probably your most direct, most observable connection to life, free of emotion. Just ten minutes of slow, deep, meditative breathing, I promise, will slow your heart rate, reduce the chaotic signals to your brain, calm your emotional state, and make it far easier to think clearly and tune in to your intuitions. You will make better decisions and with far less energy. I know, I know, your mother always told you the same thing. Just try it.
II. The New Normal
You realize, perhaps for the first time, that you have a new role—family caregiver. And this isn’t a sprint. This is going to be a marathon. You are living with a new uncertainty, and you are not going back to the old normal. This may also be a welcome reprieve. A disease process has been interrupted and now may be reversed. Waves of humble appreciation for life may sweep over you and your loved one.
What to do: Go with those waves. Let them pull both of you away from your usual habits and routines. If it’s a life partner, try crazy experiments—an exotic cuisine, a sport you both gave up, a new avocation. Volunteer in a soup kitchen. Go biking, fishing, or hiking together. Take up yoga or a new language. Give away your well-worn clothes and buy entirely different ones. Move to a houseboat. Live in another country for six months. The point is to collaborate with your partner on a bold change in your lives. These are great boosts to the immune system. If it is a parent whose health status is threatened, pick up your traditional visits. Make surprise visits. Send zany presents. Get your parents online, on Facebook or Twitter, and set up their profile. Introduce them to a sport they can play in their living room, on a Wii. Take them on outings to unexpected places—a comedy club, a drumming class, an auto show, a political rally. You and the person you’re caring for will create entirely new pathways in your brain by participating in unfamiliar activities. Whipped into action, the body responds with natural mood elevators.
III. Boomerang
Everything has settled down into a new normal routine. It’s been months, maybe a year or more. You’re handling it, thinking OK, I can do this. And suddenly, BOO MERANG! A new crisis erupts. The original illness roars out of hibernation. Or aggressive treatment causes a backlash of complications. Or the family member who was still robust and had been caring for your unwell parent suddenly suffers a surprise setback. Now they both need help. You are the backup. This is one of those turnings that you have made before. You are back at Shock and Mobilization, but you know better now not to be passive and
accept the first doctor’s opinion.
What to do: This time, you need to designate one physician as your medical quarterback who will assemble a team and call the plays. You may want to consult a research guide. You will certainly want to explore complementary, nonmedical treatments that can boost the patient’s immune system and foster a positive attitude. It is essential to call a family meeting and get others involved, since it is now clear that this will be a chronic, or recurring, health condition. Now is the time to begin seriously caring for yourself. You need to learn how to shift out of crisis mode and into a healthier gear since this may be a long journey.
IV. Playing God
By now you’ve become a seasoned caregiver. You’re good at it and the only person your loved one trusts. You also believe you’re the only one who truly understands what he or she needs. You consider yourself heroic, partly because others tell you so. You are Playing God. But the truth is that we can’t control disease or aging. And if we keep
trying, we will be overcome by stress and fatigue. When all our efforts fail to protect our loved one from inevitable downturns, the failure will feel like our own.
What to do: Eventually, we have to accept that some things are totally beyond our control. Clinging to unattainable hopes simply causes more suffering. But we can change one thing—our own attitude.
V. “I Can’t Do This Anymore!”
You were convinced you could do it differently. You’d be fine. But one day, a year or two or three later, you break into tears, totally fatigued. Same thing the next day. You’ve given up so much. You’re cracking. You absolutely must come up for air or you’ll go down in despair.
What to do: Call for help! There are resources in the community that you are probably
not aware of. With imagination, you can pull together a care team. You need to take breaks. Everyone needs a vacation at least once a year. But most important, you must start taking care of yourself on a daily basis. Carve out at least one hour every day to do something that will give you pleasure and refreshment. Take a walk. Have coffee with a friend. Go to the library and read a book. Work in the garage. Listen to music. Chop wood. Walk a labyrinth. And know this: Your loved one also needs some time with other
people who offer stimulation of a different kind.
VI. Coming Back
This is the crucial turning. It now becomes clear that your loved one is not going to get well and will become more and more dependent and needy. You are approaching the center of the labyrinth. This is a place of sadness and reflection. You may touch the depths of despair. But it is here that caregivers who survive begin the effort of coming back to life. People often say, “I can’t wait to get my old life back.” But that is not the
way it happens. You are changed by this long passage. You can’t go back to your old self. The middle of your journey is the time to begin thinking about Coming Back to find a new self. I know it sounds selfish, but the reality is that you will continue on the path of life. Your loved one is on a different path. There is peril in remaining so attached to your declining loved one that you lose your “self ” and go down with the person who cannot come back. Too many long-term caregivers retreat into isolation or addiction or depression, or unconsciously act out their despair that nothing will ever change. Caregivers sometimes set up their own illness or an accident, wishing they will be taken care of themselves.
What to do: It is here, then, at the center of the labyrinth of caregiving, that we need to begin releasing our loved one. Letting go. It is a slow and painful process. Of course, most of us will rebound with any signs of hope that he or she is getting better. But releasing our attachment allows us to begin receiving images of our new life. Releasing and receiving is what the caregiver needs and deserves. It makes it easier to begin anticipating the grief of loss. This is the time to resist isolation and reach out to replenish your emotional
attachments. Grandchildren? Old friends? A support group or a church group with people
who will be eager to carry you across the abyss? Connect with other caregivers who will understand your situation so you can help each other. What were your lifelines before caregiving? Remember your former transports to joy, whether work or play. Pick them up again. Renew your efforts to find spiritual guidance. We all need some higher power to whom we can turn over our burdens and direct our prayers or meditations. Asking for reassurance that you will find the way out of the labyrinth is an active act of hope.
VII. The In-Between Stage
This is a momentous turning point for those who care for the chronically ill. Your loved one cannot be cured in an acute-care hospital, but he or she is not ready to die—and may live on for years. But our health-care system has little to offer at this stage, except round-trips to the emergency room and readmissions to the hospital. One in five Medicare patients is returned to the hospital within a month of discharge. Why? Because insurers pay hospitals to treat disease, instead of rewarding them for following the patient with decent aftercare at home that will keep them healthy and reduce the number of round-trips. These readmissions are debilitating for both the patient and the caregiver. And
they cost the federal government an estimated $17 billion a year.
What to do: I found a solution in palliative care—which is an entirely different strategy. In between hospital and hospice is home, where most people want to live out the long afternoon of their lives. Palliative care is a preventive care model. The goal is to prevent the crisis that would require readmission to the hospital. You need to expand the circle of people who will assume some responsibility for aspects of care or just be present with your dependent loved one. Let members of your family and friends who have not been involved know that you have reached the end of your rope. Even long distance, they can be helpful. And don’t be shy about asking for assistance from neighbors, coworkers, your church, your community college, or social organizations. Find students who need to do public service for their high school or college. If you ask someone to help you when you really need it, they like you better because they feel valuable and closer to you. More important, surrounding your loved one with a circle of love is the best medicine of all. And there is now scientific proof of this obvious human instinct.
VIII. The Long Good-bye
This is the last turning. No one can answer your most burning question. How long? Inevitably, there will be times when you see your loved one suffering that you will likely feel: Why can’t you die? It’s enough. Then, of course, you’ll feel guilty for thinking such a thing. But it is entirely human and predictable.
What to do: It is important at this turning to have end-of-life conversations. Find ways to encourage your loved one to talk about his or her goals for this precious last stage of life. Suggest a life review. Talk about what has given his or her life meaning, and what will be passed on. Bring in a spiritual confidante,
religious or pastoral, to talk about how to find peace in coming to the end of life.
What kind of medical interventions does he or she want—or want stopped? This should have been spelled out in writing earlier, but if not, make sure a living will is up to date, very specific, and communicated to anyone involved in the care. Turn the decision making over to your loved one. This is his or her death, not yours. You are on a different journey.
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Monday, 26 September 2011