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.
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-seeping 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.
Except for a few pages aimed directly at dealing with Alzheimers disease, which does not apply to me, I gulped down Passages like a glass of lemonade on a hot summer’s day. When I got to the last chapters I realized, with a sigh of relief, I am not crazy, just burned out. I’ve been about the business of caregiving for most of my life, so you’d think I would have recognized the symptoms. The fact that I considered, even for a moment, that “burn out” was better than “crazy” is a pretty good sign that I needed the wake-up call Passages provided.
Passages also drew a picture of my caregiving style. Without knowing I’ve bypassed Super-hero status and moved right on to God. According to Sheehy “Playing God” is a common trait in caregivers. It is no surprise that people with a “strong sense of compassion” (267) are more likely to jump into the caregiving boxing ring. Because we are not God, by the time we get to round 5 or 6 or 7 we’ve almost succeeded in knocking ourselves to the mat where we hear our own voices counting to ten. “It may feel powerful but over time the caregiver begins to lose herself.” Beware,” warns Sheehy, “wanting to believe I am the one who can do it better. No one else is going to do it the way I do, is a trap.” (268)
“No earthling can control the trajectory of disease or elude the eventuality of death. Taking on the responsibility invites overwhelming stress and is destined to result in a residue of guilt.” (268). Or like me, a bag of resentments I carry around like Santa on Christmas Eve.
My father is nearing the three year anniversary of his cancer diagnosis. We’ve celebrated what we expected to be his last Christmas and birthday. Now it’s September and although he has declined to the point he eats a little, sleeps a lot, and has conversations with people only he can see, Dad still does not appear to be at death’s door. Passages helped made me see that I have been holding my breath for almost a year. As if on Sentry duty, I’ve been on the hyper-alert for the first signs of my father’s imminent demise. Instead of savoring the time we have left, I wake up most mornings with a jolt of adrenaline and a stomach-grabbing dread of what the day may in store. Like many others in my situation, I am stuck in a hamster wheel of my own making feeling tired, cranky, and shell-shocked. Dare I say disappointed?
Do I want my father to pass away? No.
Do I want this daily routine to let up. Yes.
Do I want to run away and not look back? Yes.
Do I dare leave my father’s side before he’s taken his last breath? No.
Questions like these are not uncommon among caregivers. Sheehy calls this “anticipatory grief” a sense of loss that “saturates many of the days of the Long Goodbye.” (336)
“Family caregivers are faced with the question of when and how to let go.” (315) This is when the caregiver must learn to walk the crooked line between letting go of the care-ee and nurturing her/his own spirit. Not easily done. I feel like I’m standing on the end of a high dive overlooking an olympic sized pool that is my future. I have two choices. One is to take the plunge off without thinking about it to help my father. The other is to slowly and deliberately back down the stairs, don some water wings and step into the shallow end to care for myself. I can’t help but wonder what might happen if the choices were reversed? Could I jump to save myself and proceed with caution to see to my father’s dying needs? I know what I should do, but lack the energy to do it. The irony is that I’ve been so busy looking after others that I’ve abandoned me, and I’m no longer sure where to look to find me. It’s when you’re feeling lost like this that Sheehy says “it’s time to save yourself.” (340) “Recent clinical studies show that long-term caregivers are at high risk for sleep deprivation, immune system deficiency, muscle and joint problems, depression, chronic anxiety, loss of concentration and premature death.” (49)
Another underrated aspect of caregiving is being (wo)man enough to tackle the astronomical bills associated with a chronic illness. The money aspect of this job cannot be ignored any more than grumpy patients or bed sores. The caregiver must attack a pile of Medicare forms with the wisdom of Solomon, the frugality of Scrooge and the prayer of an alcoholic. “God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.”
The price of healthcare is skyrocketing. It is often the caregiver who must run the gauntlet of bureaucratic red tape. Sheehy explains in easy to understand language how the “system” works, both for and against, the patient. In my opinion, there are two must reads for everyone in my age bracket. For a short but startling account of how the Hospital/Medicare partnership works, go straight to page 283. Politics schmolitics. Ours is a healthcare system that is as much in need of repair as the hospital recliner that sits by the side of the patient’s bed. (If you’ve ever tried to sleep in one of those things, you know what I’m talking about.)
Passages Epilogue is a mini-course in what the future could look like for you and me. “Who will take care of us?”(359) is more than a rhetorical question. The answer is “us” (359) and it must be answered in the near, not distant, future. “The only way families are going to be able to afford the shift from institutional care to home care for seniors is if government help to support family caregivers. Passages is a call to action.” (359)
You might think a book like Passages would be dry and hard to read. It’s not. It’s got information for those who like to read with a highlighter nearby. It’s got drama for those who dream of going toe-to-toe with a real person, not corporate answering machines. It’s got an incredible love story. It’s even got a happy ending. Sheehy’s husband, for whom she cared for 17 years, found the peace to die (355), while she found the courage to live. Good news for caregivers everywhere. Passages can be found at all the major book outlets. Do yourself a
favor. Pick up a copy. Then do what I’m doing, spread the word. Caregiving, like growing old, is not for the faint of heart. This book could well be the last word on the subject. Except, of course, for mine.
**Instead she her memoir and is now a gifted author and speaker. Her favorite topic? Caregiving.
*** While I refer to the care and feeding of our parents, many caregivers are taking care of chronically ill children, grandchildren, or a spouse. Each situation is unique. Passages addresses common denominators that apply to all types of caregiving.
*Sheehy, Gail. Passages in Caregiving Turning Chaos into Confidence. New York, NY: HarperCollins, 2010. Print.
Mary Ellington
