I started having children when I was 19. At the ripe old age of 48, my empty nest felt lonely. I could have taken up a strenuous hobby like running marathons or climbing mountains on each of the world’s continents. Instead, I responded to a request by my father to move back home to help care for my mother who had some after-stroke disabilities. Fifteen years later I’m still at it. It’s a sure bet that mountain climbing would have been the easier choice.
Two months after mother’s death, I got a foretaste of what it would be like to care for my father. He had his hip replaced for the third time. While surgical techniques had improved, his aging body took longer to heal. I knew things were taking a distasteful turn when he was asked to leave Brooks Rehab Hospital for cussing at a therapist. I don’t think the words were so offensive, but rather the tone of his voice. Think of a mama grizzly bear protecting a cub - head thrown back, teeth bared and claws sharp enough to cut the air - and you can understand why the hospital chose to release Dad into my care. Thus began the next phase of my caregiving experience. It continues to be both the best of times and the worst of times.
Five years after that surgery, my father was diagnosed with bladder cancer. In hushed tones as if that would keep the devil away the doctors described the tumor as “aggressive.” Dad opted out of periodic surgeries to remove the invading cancer cells. After giving serious consideration to the emotional, physical and spiritual consequences, he also decided against chemotherapy. His primary care doctor enrolled “us” in hospice.
Passages In Caregiving*
A Book Review
HELP WANTED: Untrained family member or friend to act as advocate, researcher, care manager,and emotional support for a parent or spouse, sibling or friend, who has been diagnosed with a serious illness or chronic disability. Duties: Make medical decisions, negotiate with insurance companies or Medicare; pay bills;legal work;personal care and entertainment in hospital and rehab. Aftercare at home:Substitute for skilled nurse if injections, IV, oxygen wound care or tube feedings are required. Long-term care: Medication management, showering, toileting, lifting, transporting, etc. Hours: On demand. Salary and benefits:0 (10)
I have just finished reading Gail Sheehy’s Passages in Caregiving, Turning Chaos into Confidence. Seldom has a non-fiction book made such an impression on me. Halfway through I felt a shout building in my inner Oprah. GO BUY THIS BOOK. Even if you are not actively engaged in caregiving at this time in your life, chances are if you are over 50, you will find yourself taking care of your parents or a spouse sometime in the future. Passages in Caregiving is bursting with information that I believe everyone (young or old) should be able to tap into at a moment’s notice. If you don’t want to read it now buy it anyway. Put it in your medicine cabinet next to the Prozac. When your doctor says you are suffering from depression, stress or burnout brought on by over zealous caregiving, you’ll know right where to find it.
My writing mentor once told me that when she was caring for her mother who suffered from a rather volatile combination of Alzheimers and Parkinson's diseases, the last thing she wanted to do was spend time in a caregiving support group.** I know that feeling. If you are in charge of the well-being of another***, you might be wondering why I suggest you spend any of your limited free time reading about what you’re already doing 24/7/365? If you have time to read anything you will probably find a fairy tale with a happy ending or a computer instruction manual more interesting that diving into a book about caregiving. But hear me out.
At some point in your caregiving career, I guarantee that you are going to feel like the only person in the world doing what you are doing. If nothing else, Passages will assure you this is not the case. “Nearly 50 million American adults are stumbling along the same un-predictable path trying to take care of their parents or other relatives or supporting a partner through chronic illness.” (10)
It is not possible to list them all so I will just touch on some of Passages highlights that stood out for me. Perhaps the most startling, I learned that “I AM NOT ALONE.” And “I DON’T HAVE TO DO THIS JOB ALONE.” Who better to help you when you feel stranded than someone like Sheehy who struggled in her own caregiving trenches for 17 years. Like other family diseases, or addictions, caregiving can, and often does, take on a life of its own. It is not selective of age, gender, race, or culture. It drags down even the strongest, most compassionate people whose goal is to provide someone they love with the best available care (and sometimes end of life experience). The all-consuming nature of caregiving isolates the one doing the hands-on work (feeding, bathing, diaper changing, entertaining, appointment making/taking, bill paying, wheelchair hefting, et al). Isolation and bone-piercing weariness lead to anger, frustration and depression, which, in turn, can lead to a caregiver that lashes out at innocent victims. The caregiver CANNOT (nor should s/he be expected to) do the job alone. Yet, for a variety of reasons, many are trying to do just that.
Most chapters in Passages are followed by highlighted “Strategy” pages where the author lists in great detail tools, websites, agency contacts and other valuable information for the caregiver, whether new at the job or nearing the final goodbye. These sections alone are worth the price of the book, and a good place to start when you are feeling harried or homicidal.
To be continued.
*** While I refer to the care and feeding of our parents, many caregivers are taking care of chronically ill children, grandchilren, or a spouse. Each situation is unique. Passages addresses common denominators that apply to all types of caregiving.