By Katherine Mayfield

My father passed away last fall at 93 after a long battle with dementia. Three and a half years before that, my mother passed away at 89 after a long illness. As Power of Attorney and health care proxy for both of my parents, I lived in what felt like a state of emergency for over six years. Every time the phone rang, my stomach lurched and my brain immediately jumped to the conclusion that this was it. Every time I came home and saw the blinking light on the answering machine, I had to take a few minutes to breathe before I punched the replay button.

If it wasn't a fall or a failing body part, it was a new medication or test result. Every time I was given a new diagnosis or asked for my permission to administer a new medication, I headed to the computer for the latest research. I discovered that one of the hardest tasks in life is making decisions about someone else's physical body. All I had to rely on was my knowledge of their end-of-life desires and my own feelings about whether or not whatever procedure it was would fit into what they had wanted.

But what was most difficult for me was finding ways to take care of myself while I was taking care of them. Anyone who has accepted caregiving responsibilities for a parent or close family member knows how hard it can be to put those responsibilities aside, even for a short time, in order to focus on their own needs.  But it's imperative to learn how to do that, especially when faced with a long illness or a difficult prognosis. Burnout can happen pretty quickly if you don't.

It became very obvious to me that I was way past burnout when, at 5'5” and 118 pounds, I started losing weight for no apparent reason. Taking a walk one day, I noticed that my pants kept sliding down from their usual resting place. Several days later, when I had to pin a pleat in my underwear, I knew something was wrong. After spending so many years focusing on my parents' illnesses, I suddenly had to focus on my own health issues along with my father's. My body was showing me what I couldn't admit consciously:  that I had overspent my energy, and had reached the end of my reserves. I knew I hadn't been taking care of my physical self the way I needed to, and I feared the worst.

Since I had recently turned 50 and was due for that exciting initiation into midlife – my first colonoscopy – I figured that would be a good place to start. Maybe there was something wrong with the way I was digesting food. The results showed nothing unusual, and I began a frantic search to find the solution that would help me regain my own health as my father's health declined.

Over a period of several months, as I watched the numbers on the scale drop lower and lower, I saw doctors and specialists, and had every possible test, but there was nothing wrong with me physically. I was actually eating more than I ever had in my life in an effort to constantly refuel myself, but my muscles were wasting away. Friends started getting worried. I pinned pleats in all my pants so they would fit, unwilling to buy new ones two sizes smaller because I knew in my gut that this was not normal for me.  What I now realize was happening was that my body was telling me in no uncertain terms that I was shrinking under the weight of the responsibility – not just my physical self, but the totality of my being.

I was literally disappearing.

Part of the problem was that I'm a single woman with no children, and the one brother I have has been estranged from my parents for many years. My parents had no other close family members. I hesitated to ask my own cousins, to whom I wasn’t close, although they probably would have offered emotional support. I had several friends who were super supports throughout the process, and they never complained. But with a strong need to be independent, I felt I had to do it all myself.

I noticed lots of resources for caregivers during those years, but never took much time to investigate them. I was too busy worrying and feeling responsible, being the “good little girl” I was supposed to be.

My parents had been demanding all of their lives, and as they grew older, they relied on me more and more. Years before my parents became ill, I tried to pass a bit of the responsibility off – by suggesting that my mother see a counselor, by encouraging my dad to make more friends, by suggesting to my brother that he call them and reconnect. But  as so often happens in families, my parents only wanted me. Some part of me saw their end-of-life processes as my last chance to please them, to finally satisfy the demands they had thrown at me for so many years, so it seemed imperative to give every ounce that I could.

I didn't think much about goals or put much energy into my own career; instead, I focused on lives coming to an end, and making them as comfortable as possible while that happened. A lot of caregiver stress comes from not knowing when the other shoe is going to drop – you only know for certain that it's going to. 

And when you've been in a state of stress for a long time, it feels nearly impossible to get a different perspective on the situation.  That's a sure sign of burnout. After my father passed, I knew that taking care of my now 98-pound self had to be my absolute number-one priority. I refocused on myself with the intense attention I had focused on my parents for so long, and that was obviously what my body had been asking for.

Eight months later, I have regained most of my health and all the weight I had lost. Grateful for the small inheritance I received, I drastically cut back on work hours and all other obligations that were draining me, and started listening to my body's messages. I was surprised at how loudly it spoke when I gave it my attention. 

I took blocks of time off to process, rest, and reorganize my life, and I attended a bereavement group sponsored by hospice. I'm lucky that I have the time and space now to do what I should have done throughout the process.

Caregiving is one of the few experiences in my life that, looking back on it, I would have done differently. I would have made a grab for all the caregiver resources I could find, swallowed my pride and asked for help, and paid more attention to my body's early signals of tiredness and distress. I would have taken more vacations, spent more time pursuing things that I enjoy, and paid more attention to having fun, rather than worrying constantly about my parents. 

Most of all, I wish I'd found a way to put my parents’ dying process in perspective. After all, death is a normal part of life. My father was in hospice for the last eight months of his life, and the hospice workers helped tremendously. At that point, I could really have started paying attention to myself, but by then I was already burned out. There is a point at which you can do nothing more for someone who's in the process of moving on; the trick is to figure out when that is, and to stop worrying, and just  “be there.”

It's taken some time to allow myself to gently let down the shoe that was up there for so long. I have to keep reminding myself that it's okay to be peaceful now, and I can allow myself to feel peaceful without feeling guilty. Though I loved my parents and wanted to give them the best care that I could, it's a relief to know that not only are they no longer suffering, but that my life is getting back to normal. I'm regaining my sanity by reminding myself that it's okay to be healthy and happy, it's okay to pay attention to my needs, and that at least where my parents are concerned, there will be no more emergencies.

Katherine Mayfield is the author of Smart Actors, Foolish Choices, and Acting A to Z.  She is working on a memoir about growing up in a fundamentalist family, entitled Live Wire.