Most articles written about caregiving tell you to take care of yourself. Being my own caregiver while providing care for my injured, ill, and then dying husband was not as easy as it sounds. I had a lot to learn in the 16 years he was sick.
For one thing, I was always sad. I had married a man I loved and thought of as my soul mate. Once he was injured, I probably never saw him clearly again. In my mind, he still looked like the young man I met and married, a kind of ’70s version of Steven Segal.
He was one of those eccentric people I think of as a character. I still smile as I think about how outrageous but kind and gentle he was. Several months before we were informed he was dying, he stayed awake in the middle of the night waiting for me to make my nightly walk to the bathroom. I don’t know how long he planned this, but he told me a joke. I still laugh about him waiting who knows how long and planning his joke.
What I just told you about David was to emphasize the following point: Feeling sad during your caregiving experience is normal. Your burden has become heavy. The reality of your sadness sometimes makes you feel like you are doing something wrong.
There is this fantasy that if you were just mentally healthy enough, you wouldn’t feel so bad. Unfortunately, there are many people who would agree with that fantasy. They might even try to “help” you by telling you so.
Taking Care of Myself
Self-care in your sadness is quite difficult and crucial. I had to accept my reality, the painful sadness, and all the losses my reality included. I had to ignore thoughtless comments from others. And I had to learn to support and comfort myself when no one else could.
Self-talk was important. I told myself, “It’s OK to be sad.”
Sometimes, I imagined giving myself a hug. Or I held my pillow and told myself, “I’m doing a good job.”
At other times, I told myself: “I’m a good person;” “This is not my fault;” “Just because other people do not understand doesn’t make me wrong;” and “it’s good that I can be myself.”
Journaling was a tremendous outlet. I wrote my feelings, sometimes over and over. There are no standards for a journal. Mine is sloppy, with lots of misspelled words and pen-injured pages. Many times I cried as I wrote, and later felt relief.
Over the years, I experimented with all sorts of self-comforting activities. Bubble baths, journaling, new clothes, books to read, movies to watch, flowers to look at, the beauty shop for my hair and nails, music. Several years, just for fun, I wore wigs. Anything that might make me smile or feel one minute lighter was OK.
One very special gift I gave myself was my satellite TV with its 30 channels of CD-quality music. I love different kinds of music, and the channels are arranged into music types — different music for different moods.
At the same time, comforting myself did not take away my sadness. It didn’t change my situation and make David well. This is one instance in which the common understanding of your thinking determining your feelings is wrong. You cannot think away normal, painful feelings.
You can, however, make life easier on yourself. If I think and focus on how normal it is to feel sad in my situation, I’ll feel less bad about it. I won’t judge myself, criticize myself, and make myself feel guilty about feeling bad. This is self-care: letting yourself be a human being.
Additional Supports
I am deeply grateful that my late husband and I participated in hospice care. David was allowed to pass away with his own outrageous personality intact to the very end: falling down in his attempt to eat dill pickles at 3 a.m. after he could no longer walk; saying “no” repeatedly for three days, which left “no” (characteristically) as his last spoken word.
With no one present to demand that he behave himself, he was safe at home. He had me to fight for his needs, protect him and comfort him.
I am grateful for all that the hospice experience gave me. David and I were allowed to complete our relationship in a way that leaves me without guilt. I was by his side when he decided to pass away. I saw his decision to go into his body as he reached for something I could not see.
Self-care is crucial for those of you who choose to give care to someone you love. Take some time, whenever you can, to experiment with different activities that might comfort you. And when you have no time, use your self-talk. Talk to yourself as you would to a good friend. This won’t change your situation, but it might lift your burden a bit.
Last reviewed: By John M. Grohol, Psy.D. on 12 Dec 2006
