From author Gail Sheehy, who took care of her husband for 17 years
About 65 million Americans currently serve as primary caregivers to chronically ill or disabled relatives. Few of these caregivers ever expected to become caregivers, and fewer still are prepared for the enormity of the task.
Until 2008, Gail Sheehy, author of the acclaimed book Passages: Predictable Crises of Adult Life, was one of those caregivers. Her husband, Clay Felker, founding editor of New York magazine, required her assistance as he battled four separate cancer diagnoses during the final 17 years of his life.
Bottom Line/Personal interviewed Sheehy, who explained that the caregiving process is like a labyrinth. As endless as it can seem, there is a path through, but there also are passages, or “turns,” along the way that make it difficult to see what lies ahead. Here, the eight turns that caregivers can expect and strategies for coping with each…
Turn 1: Shock and Mobilization
The call to caregiving can come out of the blue. A previously healthy relative experiences a major medical problem, and suddenly you’re asked to provide not just care, but assistance sorting through treatment options. This is important and often complex, yet you are pressured to make quick decisions. Expect to feel fear and confusion.
Strategy: Seek out multiple opinions and treatment options before proceeding.
Example: When my husband’s throat cancer reappeared after a period of remission, Clay’s doctor said his voice box would have to be removed. Fortunately, we knew not to jump at the first treatment option suggested. We tracked down a specialist in my husband’s type of tumor, and he offered a different treatment strategy that preserved Clay’s ability to speak and extended his life.
Record your loved one’s consultations with doctors using a small portable voice recorder. These consultations can be emotional and confusing, which makes it easy to get the facts wrong if you’re working from memory. Tell the doctor that this recording will help you avoid bothering him/her with questions later.
During these initial medical consultations, ask doctors…
“Will you be the one to coordinate care?”
“Will you help us decide among treatment options?”
“Will you help address pain and other side effects of treatment?”
These questions will point you toward a “medical quarterback,” a doctor who is willing to take the lead in your loved one’s care.
Turn 2: The New Normal
You have reached this turn when you realize that you are a caregiver — and that caregiving is likely to be a big part of your life for a long time. On the bright side, your sense of panic should begin to recede as you settle into this new reality.
Strategy: Do not settle into this new life alone. Seek out friends, relatives, neighbors and colleagues who are willing to help provide care and support.
Also, if the patient is elderly, hire a geriatric care manager (GCM), an expert in sorting though insurance and Medicare mazes and finding resources available to caregivers. These professionals typically charge $80 to $250 per hour and are not covered by Medicare or most insurance policies, but it’s worth paying for at least a one-hour consultation even if money is tight. The National Association of Professional Geriatric Care Managers can help you find a GCM in your region (520-881-8008, www.CareManager.org).
Turn 3: Boomerang
Months have passed, perhaps years. You have settled into the routines of caregiving — and then there’s another crisis. Your loved one’s health has taken a turn for the worse, and you feel like you’re right back at Turn 1. Only you’re not — you’re now much better equipped to handle these emergencies. You’ve become an expert on your loved one’s medical condition… you’re an old hand at dealing with insurance companies and Medicare… and you have a medical quarterback in place.
Strategy: The relative calm of The New Normal might have convinced you that you can handle caregiving. The emotional roller coaster of the Boomerang serves as a reminder that caregivers require care, too. If you haven’t already done so, find a support network for yourself. The Well Spouse Association (800-838-0879, www.WellSpouse.org) directs spousal caregivers to local and online support groups. The Family Caregiver Alliance (800-445-8106, www.Caregiver.org) directs caregivers to a range of appropriate support groups, many associated with specific health problems.
Turn 4: Playing God
Many caregivers understandably come to see themselves as pivotal to their loved one’s survival. It is perfectly fine to take pride in your caregiving efforts — but it is vital that you do not view your loved one’s good days and progress as proof of your value. If you do this, you are likely to blame yourself for your loved one’s bad days and setbacks — and bad days and setbacks are virtually inevitable with chronic health conditions.
Strategy: When there are changes in your loved one’s condition — good or bad — remind yourself that there is a God, and it is not you. Be sure to involve family members and the patient in decision-making to protect yourself from guilt if something goes wrong.
Turn 5: “I can’t do this anymore!”
There are no weekends or vacations for many caregivers. Their responsibilities seem unending — but no one can be a caregiver every day for years. We reach the end of our rope.
Strategy: Get out of the home and away from your loved one for at least one hour each day and at least one full day every month, even if this means stretching the budget to hire a professional caregiver. If your loved one is on Medicare, contact the hospice or palliative care department (see Turns 7 and 8) of a local hospital and request a “respite.” Most caregivers do not realize that Medicare often will pay most or all of the costs of having this department look after their loved ones for as long as five days as frequently as every 90 days so that the caregiver can take a break. (Private medical insurance generally does not cover respite care.)
Turn 6: Coming back
You have reached this turn when you realize that your loved one is never going to fully recover. He will only become more dependent.
You have reached the center of the labyrinth, and it is time to start planning your journey back out. This is the most painful turn in the caregiving process because it forces a caregiver to acknowledge that the only way to escape the labyrinth is to start to release his/her loved one. A caregiver who can’t take this step becomes indistinguishable from his loved one, so lost in another person’s medical struggles that he loses his “self” and becomes a caregiver, nothing else.
Example: By the end of my husband’s life, I began to doubt my ability to write, something I had been doing virtually all my life.
Strategy: Take up a challenging and fulfilling hobby that you can pursue while in the home, such as art, writing or music. Just waiting for your next caregiving task is not a life.
Turns 7 and 8: The in-between stage/The long good-bye
Hospitals are designed to cure medical problems, not treat patients with incurable conditions. Hospice care is intended only for patients in the final months of life. Caregivers often are at a loss for where to seek medical care when neither of these solutions fits.
Strategy: Find a local hospital that offers “palliative care” (go to www.GetPalliativeCare.org, then search the “Provider Directory”). Like hospice care, palliative care focuses on pain relief — but unlike hospice care, it is not just for those close to death, and it can be combined with treatments meant to address the underlying condition.
Hospice care becomes an option once a doctor has determined that the patient most likely has six months or less to live. Caregivers often receive the most cherished benefit of hospice care. They and other family members almost universally express gratitude for being guided and supported through the mysteries of the dying process. The common refrain is, “We couldn’t have done it alone.”