In "Passages in Caregiving," Gail Sheehy, the acclaimed expert on the aging baby boomer generation, outlines strategies for effective, successful family caregiving, turning chaos into confidence during this most crucial of life stages. An excerpt.
Eight turnings around the labyrinth of 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.
As you begin chasing facts and opinions and run into contradictions, you will feel disoriented, as if swooping up and down on a roller coaster. Your emotions run wild. You may wake to the first light of morning in a sweat, convinced you never slept.
To start the day more calmly, try breathing exercises. 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.
I know, I know, your mother always told you the same thing. Just try it.
II. The new rormal
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. 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 house boat. 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.
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, BOOMERANG! 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. 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. You are the only person your loved one trusts. You also believe you’re the only one who truly understands what he or she needs. People say you are heroic, and you are beginning to believe it. 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. 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.
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 plea sure 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 must 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, despairing that nothing will ever change. Caregivers sometimes set up their own illness or accident, unconsciously wishing to be taken care of themselves.
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 relaxing 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 and allow you to help one another.
What were your lifelines before caregiving? Remember your former transports to joy, whether in 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.
Our healthcare system has little to offer at this stage, except roundtrips to the emergency room and readmissions to the hospital. According to a study published in The New England Journal of Medicine, one in five Medicare patients ends up back in the hospital within the first month. Why? Because insurers pay hospitals to treat disease rather than rewarding them for decent follow up care that would reduce the number of rehospitalizations. The estimated cost of return visits in 2004, the study states, was $17.4 billion.
I found a solution for the In-Between Stage in palliative care. 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 from your local high school or college who need to do public ser vice.
Surrounding your loved one with a circle of love is the best medicine of all. 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.
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 confidant, 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 discontinued? This may 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.
Here’s what I learned the hard way about responding to the Shock and Mobilization phase.
Start the conversation before the crisis
Only a third of Americans say they have talked with a family member or friend about providing them with care in the future. Despite this head- in- the- sand behavior, most Americans still believe that a close family member will “be there” to care for them. My husband and I had not talked about the what-ifs, despite the fact we were both in midlife. The best strategy is to start having such conversations— with your spouse, your parents, your siblings, and your children— early and often. Don’t wait until a crisis adds more tension or your loved one isn’t well enough to participate fully.
Interview doctors Speak up! In your initial consult with any doctor, determine if he or she is willing to be a partner with your loved one and with you, as the caregiver. You have every right to interview the doctors who want to treat your family. Your primary task in the mobilization phase is to be a good reporter.
Doctors can be brilliant and compassionate. They are also human, fallible, and rushed. Notice whether the doctor takes a thorough history, not just rote facts about allergies and frequency of bowel movements. Does he or she ask what the patient lives for? How various treatments would affect the patient’s quality of life? Some doctors see you as a guinea pig for testing a new drug; others seem focused on scheduling.
Three questions you must ask:
• Will you be the one to coordinate the care? Or who will?
• Will you help us decide among different treatment options?
• Will you help address pain and other side effects of treatment?
Seek a second opinion
You can now consult a doctor or seek a second opinion, from home, using your computer and a web camera. Telemedicine is exploding and more options will become available.
The famous Cleveland Clinic offers an online medical service that can connect you to top specialists when you are faced with a serious diagnosis, or for a more routine medical or nutrition consult. The website is http://my.clevelandclinicorg/eclevelandclinic/myconsult/default.aspx.
MDLiveCare is another live health-care delivery system where you can consult certain kinds of doctors, on demand, 24/7, from anywhere. It offers a national network of board-certified U.S. physicians (pediatricians, dermatologists) and licensed therapists and nutritionists. These in- person consults can be done via real-time video, phone, or secure e-mail, regardless of your location. The website is www.mdlivecare.com. The regular mailing address is 700 Banyan Trail, Suite 200, Boca Raton, FL 33431, or call 786-419-4661.
Consider treatment options
Draw out your family members’ questions and concerns. If you are still confused or have unresolved questions, ask the doctor for a follow-up consult. Take a tape recorder into any important consult, or at least a notebook. Doctors rarely object. Get it all down. You will be surprised at how you and your patient hear what you want to hear or exaggerate the negative. It’s normal. You are both under great tension. Weeks later, when you’re making your final decisions, these notes will be pure gold.
If you are going into an important diagnostic consult with your wife or husband, take along a third pair of ears—an adult child, sibling, or friend. A neutral observer can later validate or challenge your own gut reactions.
Use guided imagery—your insurance may pay for it!
At a recent West Point course in Enhanced Performance (ACEP), I learned that Clay and I and Doctors Conley and Fisher were almost twenty years ahead of our time. Utilizing guided imagery on a CD to train a patient beforehand to accept the assault of surgery with “detached interest” rather than tensed defenses is now a technique that has gone mainstream.
The mind cannot distinguish between a highly vivid image and the real thing. Our nervous system will process the imagined information very much the same way it would the actual experience. That insight can be used to fortify a patient before any fearful procedure.
Creating visual imagery is a skill. Here’s how the army trains its soldiers to practice developing a mental imagery CD. Using every one of your senses, imagine the following about the experience:
What will it look like (in the OR)?
What will it smell like?
What will things taste like?
What will it feel like (when the surgeon operates while I am under anesthesia)?
How will you feel when it’s over? (Happy the tumor is gone.)
Our hunch back then—that the less stress around any invasive procedure, the shorter time it would take to heal—is now demonstrable fact. Blue Cross/Blue Shield of California conducted a trial with remarkable results, showing that practice with guided imagery CDs resulted in shorter hospital stays and less medication. The company saved an average of $2,000 per surgical patient.
Blue Cross/Blue Shield now offers a significant discount to patients who choose the Guided Imagery Option. For information, call the company’s Alternative Medicine Ser vice Center, part of its Options Program, at 800-514-6502.
Ask about quality of life under treatment
Only when patients do this will the side effects and aftereffects of surgery and drugs become less ominous. Palliative care focuses on the relief of pain, stress, and other debilitating symptoms of serious illness. Palliative care can be delivered at the same time as treatment that is meant to cure you. Most large hospitals have a palliative-care team of doctors, nurses, and a social worker. Ask for a consult with the palliative-care team to help the patient match goals for quality of life with the treatment chosen.
Check out hospitals
Rankings and ratings on hospitals are made available by not- for- profit groups like the National Committee for Quality Assurance (NCQA), which issues an annual report card on hospitals after they pass a rigorous, comprehensive review. The Leapfrog Group, supported by companies who agree to buy health care that meets certain safety and quality standards, also rates hospitals’ performance on patient safety, high- risk procedures, and intensive care. If your specialist has privileges at only one hospital, it still pays to check it out. If you are disappointed, you may want to look for another specialist. The Leapfrog Group’s website is www.leapfroggroup.org, or call 202-292-6713.
The Joint Commission on Accreditation of Healthcare Organizations is the nation’s leading nonprofit accreditation group that encourages quality and safety standards among health-care facilities and gives a seal of approval to those that meet its standards. Quality Check is JCAHO’s online search ser vice of accredited hospitals, laboratories, and nursing homes. You can search facilities by accessing www.jointcommission.org/QualityCheck.
Google without freaking
As I mentioned earlier, working the Internet blindly is scary. In our case, it became almost comical. Don’t take seriously the dire warnings of treatment side effects or survival statistics until you have talked with more than one medical professional and consulted the specific disease organization. The “median survival” rate refers to the person in the middle of the curve. That means that given any one hundred patients using the same medical treatment, 50 percent will live longer than the median. Survival statistics are based on the use of a particular drug or medical treatment. They exclude all patients who add any nonmedical supplement from nutrition to prayer.
Absorb the shock and process together
Don’t immediately leap into action. Pause to let the news sink in. You and the patient need time together. Advice from friends and family may be useful but also contradictory. After all the consults and a firm diagnosis, take a weekend off from everybody else and just sit with nature or music or take walks or bike rides—anything to rest your minds and remember what you both have to appreciate. In a calm and receptive state, you are more likely to receive an insight or inspiration and know which direction feels right.
What if you and your loved one can’t agree? It’s the patient’s call. Ask him or her who should be told and who shouldn’t at this early stage. Job security may be at stake and bad news travels fast.
As a caregiver you must respect your loved one’s wishes here.
Develop an action plan
List quality-of-life goals and the steps needed to achieve them. Focus on what’s right with you and your loved one, not what’s wrong. Discuss treatment outcomes—what does your loved one want and not want? Then talk about possibilities for a future beyond this crisis. What new dream might he or she now be willing to consider?
Don’t cheerlead too hard and burden your loved one with unrealistic expectations on top of his or her own fears. Remember—you don’t have control over everything. This is a brand-new experience. Be patient with yourselves as you both learn to adjust.
Create an e-mail tree or Twitter to update family and friends while you’re spending time in the hospital without any idea of the outcome. It will save you the exhaustion of talking to each family member and being overloaded with their responses. Calm yourself with music or a book on CD to shut out the din of the hospital. Ignore criticism: remember, you’re doing the best you can. So is your loved one. Practice patience. When your sister or brother calls in from the other side of the country to insist that you’re headed in the wrong direction, remember this:
The farther away they live, the quicker they assume you don’t know what you’re doing.
Excerpted from "Passages in Caregiving" by Gail Sheehy with permission of William Morrow/An Imprint of HarperCollins Publishers (c) 2010.