Who Cares for the Caregivers?
A few weeks ago, on the way home from a day of meetings in New York City, I got a text from my fiance, B: “Just got off the phone with my mom. Dad is in ICU. Doesn’t look good right now. I am going to start looking for flights.” The next day we were off to Orlando, and the next two days were spent mostly in the hospital, where he was suffering from congestive heart failure and pneumonia.
That wasn’t the way I had wanted to meet his parents. But it is becoming increasingly apparent that life has a way of doing its own thing, often without your consent. There was his dad, sedated and hooked up to a ventilator and a plethora of machines monitoring heart rate, blood pressure, oxygen levels. And there was his mom, at his side, where she had stayed for nearly two days since he had coded and it took nine minutes to revive him.
I’ve spent quality time in hospitals these past few years. Any fear that I may have had before has long since disappeared since December 2009, when my daughter, E, was diagnosed with ITP, a rare blood disorder in which her body’s antibodies attack its platelets. For nearly a year we spent at least one day a week at one of three different area hospitals. In the first six months of her illness, there were many, many overnight stays, as sudden drops in platelet counts require immediate attention that goes beyond day- clinic hours. So when I came to see B’s dad, I was thinking as much about his mom and sister as I was his dad’s condition. I know how it feels to be the one sitting by the hospital bed. Waiting. Hoping. Praying. Trying to be strong.
Who cares for the caregivers? Somebody has to.
Here’s what I learned from being the one on the front lines: 1) A friend once told me, “People want to help you so let them.” I have always had a hard time taking from others–I’m a chronic giver, to a fault (see blogs on failed marriage)–so this idea is innately difficult for me. But exhaustion has a wonderful way of wearing down your pride. I accepted kindnesses from friends and family. I leaned heavily on my loved ones in all ways: B, my mom and brother especially. I was lucky–there was no shortage of support for me or E.
2) Replenish yourself. I have custody of E so we are together most of the week. But Sundays she is with her father, and this was my day to regroup. I overcame my guilt that I was supposed to be by her side 24/7 and took time for myself. Many a Sunday B and I would go hiking, go out for brunch, go swimming in a nearby lake, take the dog out for a walk. Sometimes I wouldn’t talk about E and her illness, sometimes it was all I could talk about. Our Sunday rituals replenished me so I could continue to be strong for E and whatever the next week would bring. (Side note: There’s nothing like a life-threatening illness to test your relationship. Our bond only strengthened; at long last, I had picked a great guy who was willing to stick with me no matter what.)
3) Get help when you feel you might be slipping. Some people like support groups, and I’m sure they can be very healing. In my case, since E’s illness is rare, the only support groups were online. I tried it, but reading about other people’s experiences was disconcerting, often discouraging to me. I saw a therapist, which helped for a while, though as time went on our bi-monthly sessions increasingly devolved into cry-a-thons.
After five months with little progress and no clear path toward recovery, I knew I was slipping into depression when her former doctors mentioned splenectomy and part of me thought, “At least then this might end.” Suddenly my mind wasn’t thinking clearly anymore. I went to my doctor instead, who confirmed that I was, in fact, suffering from depression. He explained that the human mind is not equipped to handle constant stress for more than a few months. After that, it breaks down. I was put on a three- to six-month course of antidepressants, which lifted my mood enough for me to get off of them after three months–my goal. (I’m an anti-pill sort by nature.) But they allowed me to think clearly again and regain a more hopeful outlook.
Who cares for the caregivers? First, we have to care for ourselves. But then we need to reach out and get the help we need so we can keep giving. And one day, if you find yourself in this role, reach out to me. I’d be so happy to help.
Running in Crocs 