Caregiving

Looking for grace during tough times

For those of you who didn’t see this post in the Detroit Free Press recently, I wanted to share it with you.

My first husband died of lung cancer in 1993. We had been married almost 10 years. He was diagnosed in May and died in September. His diagnosis was grim at best: No cure, but doctors would try their best to make him comfortable.

Between myself and my mother-in-law, we took care of him during his treatment and until his transition. I drove him to all his appointments, including periodic rounds of radiation and chemotherapy. As anyone who has cared for someone with a serious illness knows, the doctor-pharmacy-test trips are a full-time job.

My mother-in-law, who flew in from out-of-state to help care for her oldest son, was a huge support during this period. I don’t know if I would have made it without her. When she was here, I was smart enough to let her be in charge of the household, while I stayed on top of medical errands, appointments, and my full-time job as a features editor at the Detroit Free Press. My employers were very kind and I was allowed to take a lot of time off when he was sick; but I had to work sometime.

When I went back to work full-time, about two weeks after my husband died, I told people I felt full of grace when they asked how I was doing. While I was still very sensitive (A bank teller asked me for my ID once and I broke into tears.) I had been through a very difficult experience and had survived it with my strength, faculties, good sense, dignity and energy intact.

Or so I thought.

This feeling of “grace” drove me to do some things that were probably foolish. I sold and bought a house. I found new confidence at work and it showed. I got a promotion. All big changes psychologists advise that you put off for a year or two after a life-changing event. But I felt a big need to start fresh after my husband’s death, so I didn’t listen. I did it all.

Eventually, others in my life were noticing smaller, subtler changes in me. Changes I didn’t notice myself.

One of my direct reports, a reporter, said I didn’t get excited enough about her ideas and stories. She needed a more lively person to work with. She wanted a new editor. I didn’t take it personally, I’m pretty low-key, so we did a switch, said our good-byes and I moved on.

But a few weeks later, another editor I worked with accused me in a very public way of not pulling my load in the office. I had to think about that. I had always prided myself in the ability to absorb and manage a lot of work. And it was then that I started to wonder whether or not I was really myself, if I was really as strong as I thought I was. Her attack wounded me deeply, and I couldn’t get it off my mind.

I went back through some of my advice books for help. Unfortunately, I didn’t feel very comfortable talking to others about how I felt because even I wasn’t sure what I was feeling. At the time, I didn’t have a good relationship with my doctor. And, except for my then-4-year-old son who was going through his own changes (Among other things, temper tantrums returned), I felt very alone.

I went to a therapist for several months. And I’m glad I did because I learned some things. She helped me work through a difficult period with good, practical advice. And slowly I came back to being myself, but it took years and I finally was able to recognize I needed to give myself time to recover from a very stressful event.

Her tips help me to this day. I sum them up this way: Focus on what you can control. You can accept help and comfort when it’s offered. You can get out once in awhile. You can eat well, and keep yourself healthy and strong. Try not to make any big decisions.

These are all things I had stopped doing. I was trying to do too much at work. I had stopped going out. I didn’t accept help or conversation because I pretended everything was fine. I was gaining weight because I was eating too much, most of it stress and emotional eating. I never let myself have a good time because it felt like a betrayal to my late husband.

Twenty years later, I am now the primary caregiver for my second husband, who is suffering from congestive heart failure. About a month ago, doctors implanted an LVAD, or left ventricular assist device, onto his heart. Thanks to modern technology, he is not going to die. He will live a long time, because this little machine is allowing him time to wait for a heart transplant.

But here’s the deal: It’s a lot of work for me.

I am, again, chief cook, laundress, dishwasher and housekeeper, all chores we used to split. There are lots of doctor appointments. Physical therapy is three times a week, and he can’t drive (yet). When he finally gets a transplant, hopefully in the next year, it starts all over again — the open-heart surgery, the recovery, the rehab. So we have some busy times ahead. My husband wants to help, and eventually he will, but that time hasn’t come yet.

My co-workers ask me often how I’m doing it, and my standing answer is: I’m not really doing it, I’m just getting by. I take it one step, one day at a time, and try not to look too far ahead.

Some things have happened at work that make me realize I’m not really handling things like I know I can. And I have to pay attention to that. This time I noticed the signs. So I am trying to take a deep breath and just know that my life has changed. I have to learn to do less in some areas to be strong for my husband. The biggest lesson for me is, yes, this is a lot of work, but there are people to help me and I have to continue to live some parts of my life that fulfill me and bring joy. It’s easy to say, but harder to do.

Life-changing events are exactly that: life-changing. For me, learning to accept the change and let it become just another part of my life — and not my whole life — is the hardest thing.

But I’m trying — still striving for grace.



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