I remember talking to my mother, who at the time was in the final stages of ovarian cancer and a few months away from dying from the disease, on Christmas Eve. It was a brutally honest conversation; she acknowledged for the first time since she was diagnosed 6 months earlier that she would not get better and would ultimately succumb to the illness.
I remember asking her, “Mom, how would you like to be remembered by those of us who will still be here after you are gone?” My mother was a person who had the gift of economy when it came to choosing her words, and without any hesitation she said, “That’s simple. The only thing that matters is that I was kind and cared about others.”
That concept of caring—I mean real, selfless, think-about-others-first caring—was foreign to the young, self-centered person sitting with her at that moment, despite being the son of a woman whose mantra was to “never return a dish empty.” Mom never received a gift or kindness that was too small not to appreciate, and after she passed away, that notion finally sunk in. “Better to give,” as the saying goes.
AT FIRST, YOU BREATHE
Nothing prepares you for the emotions you experience when a loved one receives the diagnosis of a debilitating illness for which there is no cure. My wife was diagnosed with early-onset Parkinson’s disease nearly 10 years ago, and the emotions we felt are as distinct today as they were then, and thrust us into the unexpected roles of patient and caregiver.
Both roles are filled with complexities that were foreign to us, and as the reality of our new situation sunk in, we mostly stumbled our way into and through this new life.
Caregiving is a humbling experience, and to meet the needs of others, all caregivers must learn some important life lessons. It’s all unchartered territory and mostly “seat-of-the-pants learning” for the caregiver, who must learn and do at the same time.
Much of the learning comes from failure and taking your lumps along the way. For me, one unexpected source of information was the application of my experiences through my job to my role at home. I work as a communications consultant within the biopharmaceutical industry, and I am in constant contact with patients who take the medicines that are being developed by pharmaceutical companies, and with the important people who are part of their caregiving team.
This experience made me realize that in no therapeutic area the patients are more informed and engaged than in cancer care. Patients with cancer, advocacy organizations, and caregiving teams wrote the book on patient advocacy and engagement, and cancer caregivers have benefited from exposure to the great strides made by these groups in understanding and managing patients’ illness.
One of the dynamics anyone who spends more than a few minutes with this group will understand is how active a role the caregivers assume. In addition to taking on the role of caring for a loved one or a family member who has cancer, they also understand the importance of maintaining their sense of self within the caregiving milieu. As one caregiver said to me at a medical conference, “Never forget your own identity, nor lose sight of how much you matter.”
That is easier said than done when you commit to a second full-time job of helping another person manage her life as well as a serious illness. It’s a tricky balance of pragmatism and emotions, and sometimes the lines blur, which is why patients with cancer and caregivers have become experts in setting rules to live and care by; an emotional and caregiving standard of care into which I have integrated my life.
IT’S A SERIOUS ILLNESS—LIGHTEN UP!
Like cancer, Parkinson’s disease is an illness that will change a person’s life forever. It will also most likely shorten that life, and take away the person you love. It’s a serious and heartbreaking notion, and without humor. Watching a person’s physical capabilities deteriorate is tragic, much like watching the life of a patient with cancer slip away. It’s hard to conjure up an image that elicits any joy or lightness when confronted with this reality, but when I see my wife making jokes about her condition, knowing that she does so to make me feel better, it’s hard not to also see the silver lining in our situation.
It’s still hard to see any humor in caring for someone with a chronic illness, but I have come to accept an element of lightness, and even a fleeting beauty in our life. This is much like the way a parent may try to remain positive and upbeat for a child with leukemia, or a husband who loves and supports his wife unconditionally when the side effects of chemo change her appearance.
I used to be a big movie fan, and one of my favorite films is “American Beauty.” One line in it has become more meaningful since the onset of my wife’s illness, and I have it hanging over my home office computer. I now start each caregiving day by reading, “Sometimes there’s so much beauty in the world, I feel like I just can’t take it, and my heart is just going to cave in.”
EXPECT THE MOON, BE THANKFUL FOR THE CLOUDS
Rule number one when any chronic illness intrudes into your life is to not expect that your expectations will be met. We are all trained to be positive when donning the caregiving hat, but if there is anything I learned from my time spent with patients with cancer and caregivers, it’s that things are likely to change frequently, and not always for the better.
A person can hold out hope that a particular therapeutic regimen will work, but it may not, at least not for you. The drugs you are taking have successfully led others into remission, so why not you? Because every cancer is different, and the way patients react is more mercurial than dependable. Of course, caregivers are no different in falling victim to unrealistic expectations. Like others before me, I was wrong in assuming I could handle the rigors of caregiving, and that balancing all the demands of my life would be easy. Maybe it was wishful thinking.
I learned from those I met during various cancer meetings that like every other aspect of this experience, managing expectations is not different. Not getting too high with hope is what experienced caregivers will advise.
You should temper disappointment by not expecting too much, whether it is success in a clinical trial, performance of a new therapy, or riding the rough waters of insurance or reimbursement. Eventually, as you become more experienced with the fine art of caregiving, you will recognize when you can expect the moon, and when you need to set your sights just a little bit lower.
TIME OUT MEANS YOU
Caring for someone with a chronic illness can make you emotionally and physically weary. It is really a 24/7 commitment, and if you combine the caregiving life with your other life of work, family, the dog, cooking, shopping, and cleaning—well, you get the picture.
It’s easy to get caught up in the tsunami of caregiving, especially as the disease and the needs become more acute, as they have with my wife. For me, the hardest thing to incorporate into my new life was the idea of taking time for myself, and yet all my conversations with cancer caregivers echo the sentiments of one man I met, who I will call William. “Look, you are doing everything possible to ensure that your wife is getting the best possible treatment, rest, exercise, and nutrition. Your health is important too, and once in a while, it’s okay to take a break and experience some ‘me’ time,” he said.
It was the hardest thing to accept, but it became one of the more important preventive elements of my own care. My “golden time,” as my wife calls it, finds me cooking or baking in the kitchen, watching “Deadliest Catch” and “American Greed” on TV, or listening to the Metropolitan Opera Saturday afternoon broadcast.
Remember to do something that brings you pleasure, and break away from your routine daily, if possible. Consider it a small reward for all the good you do as a caregiver, and say these words daily, “Caregiver, care for thyself.”