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janeThe Colberts: Shock & Mobilization
(Part 1 of 5)
"The Call" is the shock that ushers us into the first phase of caregiving: Shock and Mobilization. A stranger's voice informs you that a family member has had a fall. Or your dad has gotten lost while driving and doesn't know where he is. Or you're told that your husband—like mine—has a tumor that is not benign.
"The Call" throws most of us into shock and probably some denial. Nobody knows how to play the role of caregiver for an adult. 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.
Adult children usually underestimate the magnitude of this new role when they get the first call: "Mom's fallen and lost mobility in one leg," my friend Mary Furlong, a 60-year-old consultant in San Francisco, told me gamely. "But as soon as I find the right wheelchair, it’ll be OK." You take a week off from work and find the wheelchair and take Mom around to doctors, then go back to your own life with a pledge to help out with paying her bills and submitting insurance claims. But if Mom doesn’t recover mobility, or if she falls again and insists on remaining at home—which is the strong preference of more than 80 percent of older Americans—the working family caregiver might need to cut back severely on her or his own career.
Later, Mary Furlong reflected, "I had nine months to prepare for the birth of my child. I had nine hours to prepare for my mother becoming dependent."
You have to become a reporter. Buy a school notebook and keep a record of what every doctor, nurse, insurance agent, and nosy friend tells you. Patients are usually under too much stress to remember clearly, or they remember only what they wanted to hear or thought they did. (Helen Colbert, given her mild dementia, came home to report that the doctor told her she had diabetes on her nose.) On crucial consults, I would ask a doctor if I could use a tape recorder. Taking notes will keep your head straight and help enormously in telling the doctor what the last doctor said. Make a contact sheet with every number and Web site you'll want to return to.
Be sure to get the nurses' names and try to establish a personal relationship with them; nurses understand that caregiving is a partnership and want to be helpful if you do your part. It's doctors you may have to convince; don't let a doctor ignore you and decree what should be done with your family member. Let the doctor know, "We are a team."
Becoming a family caregiver can also creep up on you. The hazy signs of early dementia, for example, create a creeping crisis. Hiding and denial are the common defenses, clung to by both the elder who keeps forgetting and by family members who don't want to believe the worst. When your loved one develops several chronic conditions that recur and go into remission and recur again—for example, multiple sclerosis, Parkinson's or diabetes—you never know how long your role is going to last. Most of us can do a sprint for up to six months. Being a chronic caregiver is no sprint. You need to plan for a marathon. A want ad would look like this:
HELP WANTED: Untrained family member or friend to act as nurse and advocate for a parent, spouse, sibling, or friend who has been diagnosed with a life-threatening illness or chronic disability. Duties: Make medical decisions, negotiate with HMOs, insurance companies, or Medicare; supply personal care in hospital and rehab; perform nursing duties at home, such as medication-management, eating, showering, toileting, transportation, bill-paying; etc. Hours: 24/7. Salary and benefits: 0.
Why would anyone apply for such a job? (The question, of course, is rhetorical.) Most of us believe that we should take care of our parents as they get older. And many of us will be tapped by fate to care for a husband or wife whose health is compromised in their Second Adulthood. Some will feel responsible for looking after a stricken sibling, life partner, or close friend.
The Creeping Crisis
For the Colbert family in our video, the creeping crisis of cognitive decline was hardly noticed by six of Helen Colbert’s seven children in the first two years. That's because Harriet, the seventh, took on all the responsibilities. The oldest daughter in a traditional, church-going African-American family, Harriet never married. She was living with her mother and father in a two-family house in a vintage neighborhood of Philadelphia when her dad began failing.
"Harriet took over as the primary caregiver for Dad and cared for him until he died," said her brother, Louis Colbert, a veteran social worker in the field of aging. Soon after being widowed, Helen Colbert, the usual fireball in the family, developed Parkinson’s disease and diabetes and began to lose her taste for life. She was 82.
"Our other brothers and sisters assumed Harriet took care of Dad, so she'd do it for Mom," admitted Louis, embarrassed in retrospect that he and the others didn't offer to help. "It was the sibling thing—old roles came up." Harriet, 58, never thought of herself as playing an important role with a name: caregiver. "This is just what we do, as a daughter," she told me. Harriet didn’t even consider asking for help from her four brothers. “We were brought up to think you always give the best meat to the men and let them rest, because they work harder.”
But Harriet also worked 50 to 60 hours a week as a medical-claims adjuster. After almost a year, the dual roles wore her down. Her mother took to her bed and began refusing to eat much more than a spoonful at a meal. Harriet suspected her mom was suffering from depression. But the doctors never mentioned it, and neither did Harriet. As a black woman with memories of segregation in her DNA, she accepted that her mother was just going through another of life's many struggles.
When a doctor insisted that her mother be hospitalized, Harriet was too exhausted and isolated to protest. Medicare would kick in, and maybe she could get some help in the house. But Helen was given a devastating diagnosis: Wasting disease—another way of saying she had not only lost her appetite for food, she had lost her appetite for life.
“Another doctor spent five minutes with my mother, who was in deep depression, and pronounced, ‘She needs hospice,’” recalls Louis with disgust. With 30 years of experience in aging work, Louis recognized the dismissive attitude as too common among hospital physicians when dealing with a once-independent and now frail older person.
“That doctor told us our mother would be dead within six months,” Harriet says.
The ultimate shock came from a doctor who talked to Harriet and her sister Lisa about how he successful he had been in easing another old woman out of life, with a single injection. The sisters looked at each other horror, before they laughed:
"Did that doctor just offer to help us kill our mother?"
Finally, the two Colbert sisters mobilized the rest of the family to help make a decision. They couldn't go on this way—Mom might have to go to a nursing home. Have you had these same feelings they describe below?
I'm 'on' all the time—waiting for the next emergency call. I can't concentrate on work, I have no time for my kids, I eat so much, I must be doubling in size every day. And I can't sleep. How long is this going to go on? The rest of my life? I feel like such a failure. If I were a really good daughter (or son, sister, brother, wife, husband, Mom) I would be able to take care with grace and patience, compassion and love. How can I feel angry and resentful? Nobody asks to get sick. They can't help it. The layers of guilt are piling up like dirty dishes. What kind of selfish brat am I? (But I still want my life back.)
Who Are the Successful Caregivers?
Our parents, or at least our mothers from the World War II generation, simply assumed that it was their lot to spend their post-menopausal years taking care of whatever family members might need help. But contemporary women in midlife are better educated, more accomplished, and more ambitious than most of our mothers. Boomer women like Harriet and Lisa Colbert have careers that they don't want to give up. They are also realizing in ever-greater numbers that they can't afford to retire.
We have to face the fact that family caregiving is going to be a normal part of all of our lives. We need to prepare, mentally and logistically, before the "Omigod! Moment": My life is changed—how do I do this?
This may well be the most important passage of your life. It is the catalyst for a resurgence of all the old issues in your family. It pits your own fondest hopes and dreams for your middle years against the wants and needs of those older and closest to you. How you respond to this family crisis, and the way it makes you feel about yourself, will follow you to the end of your days.
The core question is: How do the healthy family members continue to have lives and provide for their own futures while caring for a loved one with a life-threatening illness or a chronic condition, coupled with normal aging?
Studies on the impact of family caregiving focus exclusively on pathology. As a result, a common fear is that anyone who accepts the job will get stressed out, emotionally and physically exhausted, be forced to give up their job, lose their friends, and ultimately sacrifice their health and financial security. Tragically, this is the down-hill spiral experienced by roughly one-third of America’s caregivers, principally because our society does not reimburse family caregivers or support us in any meaningful way.
According to a 30-year survey by the Rosalynn Carter Institute, about one-third of family caregivers decline in health and well-being and age prematurely. Another third adapt to the stresses with varying degrees of success; many learn new skills and become more empowered in all areas of their lives as a result. And one third say their lives have been enriched by acting as family caregivers.
"The successful group is the one we never study—the people who say their lives have been made better," says psychologist Rick Birkel, executive director of the Carter Institute. "We don't understand what distinguishes each of these three groups, but it is definitely not just income."
No study or book that I know of has focused on the experiences of the caregivers who find ways to cope and thrive. That is my objective. The Colbert family is a fine example of unheralded caregivers who have walked through the fire, faced their fears, held on through groundlessness, found their courage, and come together with everyone in the family helping and finding resources in the community. Louis Colbert vowed, "We needed to come up with a plan so nobody has to give up everything, and Mom can stay in her home."
How did the Colberts achieve this worthy goal? Come back to see how the family worked its way through the labyrinth to a happy outcome. New videos will be posted every week.
More on the Colbert family:
Part 1: Shock & Mobilization
- Read journal
- Watch video
Part 2: The New Normal
Part 3: How to Become a Fearless Caregiver
Part 4: I Can't Do This Anymore
Part 5: The Circle of Care
On June 2, 1995, I received a call from my mother who told me something strange had happened. She had been standing at the refrigerator when suddenly she was in the dining room, and then back in the kichen, and she flipped back and forth between rooms, but her hand never left the refrigerator door. Something was wrong, and she asked me to come up.
Six years of "Mom Care" followed. I thought she was dying one cell at a time. I did not know she had Alzheimer's until the last six months of her life.
"The core question is: How do the healthy family members continue to have lives and provide for their own futures while caring for a loved one with a life-threatening illness or a chronic condition, coupled with normal aging?"
For me, one answer was journaling. It gave me perspective and kept me sane. It also recorded details that would have been lost. It is a valuable record of my truths.
Journaling is a great stress reliever for caregivers and I encourage everyone to give it a try. Not sure how to start? You can find encouragement, instructions, and over 200 sentence starts in YOU WANT ME TO DO WHAT? JOURNALING FOR CAREGIVERS. Finish a sentence, write the next sentence, and you are journaling.
Let me know how it works for you.
B. Lynn Goodwin
www.writeradvice.com
Author of YOU WANT ME TO DO WHAT? JOURNALING FOR CAREGIVERS
This is so true to me. I am the oldest sibling of 3, but the only one who seems to see the whole forest, not a single tree in a single moment. My father had aggressive prostate cancer, and I took vacation time and lived with he and my mother the last 5 weeks of his life (I live 4 hours away). I am a nurse practitioner, but the most practical of the 3 sibs. My brother, the family medicine doc and his nurse wife lived one minute away, but could only manage to stop by occasionally, or if given a specific task. Getting oxygen for my dad when he had trouble breathing took pleading with my brother's medical practice, as well as getting hospice, etc. My brother always acted frustrated and too busy. My sister-in-law supposedly paid the bills, but when I found that they were paid late and financial charges acrued I took over that as well. Before my father died I had to beg my brother to say goodbye to him so Dad could die in peace. He was in big denial, yet he took care of many nursing home patients in his practice.
After my father died it became obvious to me that my 88 year old mother was not capable of living alone. She burned pots, overdosed on meds, was in auto accident that was her fault, etc. It took over one year to convince my brother and my sister (an actress in another state) that we needed to make arrangements. I took early retirement, cleaned her home, sold it and moved my mom to live with me 4 hours away. She has been here for one year with dementia, and out of frustration I also am in charge of her medical care, finances, and all of her daily care. My sister has seen her twice in one year (when I bring Mom to her), and my brother doesn't even call unless I leave a message for him to call. It is much easier for me to handle it all. My children are grown and live close by and I have friends who will babysit for me when needed. I suffer through each stage of changes by having dementia support friends. Life on hold is my name.
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