Monday, April 23, 2012

"T" is for Taking Care

T Therapy, or, Taking Care of the Caregiver

Caring for a loved one with a disease such as dementia is incredibly stressful--as I don’ t need to tell anyone who’s doing or has done it. Psychologists even have terms for it: compassion fatigue or empathic strain. Books, friends, doctors, will tell you that you have to take care of yourself first in order to be able to care for the other person. Figuring out how to do that, though, is a lot harder. Whether your loved one is in his or her own home or living with you, caregiving is going to take a big chunk of your time and a huge psychological toll. Watching a parent, grandparent, or other loved one deteriorate day by day, never knowing what you’re going to find the next time you see her or him, wears terribly on your mind and emotions.

And all this comes on top of many other responsibilities: work, marriage, possibly children, social obligations. Somehow the caregiver needs to figure out how to juggle all this, and inevitably some things have to go.

I was lucky in three ways: I don’t have minor children to care for. I have a husband who cares enough about me and my mother to make sacrifices in his own life for us. And I am a freelancer who works at home. Still, I ended up sacrificing my own home and a good part of my life; I also developed Graves’ disease (hyperthyroidism), though whether the stress brought it on or the disease exacerbated the stress I don’t know. It just made things much harder: I lost weight, I felt exhausted, I had tremors and was short-tempered. Under those circumstances and until I got treatment, I didn’t feel very capable of caring for myself.  

Nevertheless, I was able to find a few means of self-defense against the stress; I wrote about a few of them here. Remember why you’re doing it. Treasure the good days. Grab your moments when you can for a quick walk or cup of tea alone. Arrange to see friends once in a while.

Some others aren’t so obvious. First, try to have a place, however small, that’s just for you, somewhere you can go when you need to cry, bang on the wall, or throw something. When we stayed with my mother for two months in her little house, there was no such place. I couldn’t even leave the house unless someone else was there with her—my husband or my sister-in-law—because we were so afraid she would fall. When we moved into our multi-unit house together, I at least had the relief of having our own apartment upstairs for a retreat when I needed it.

The most important thing you can do, though, is try to hold on to yourself: the things that are important to you, that express who you are. Hold on to your interests. These are the parts of yourself that are very easy to lose in a stressful situation, but they’re also the most vital.

Caregivers tend to be in crisis mode most of the time. When I would be upstairs in my office working, in the back of my mind I’d be wondering what was going on downstairs: Is she still sleeping in her chair, or did she get up to go to the bathroom and fall? What if she wakes up, doesn’t recognize her surroundings, and gets scared? Will she open her door and yell “Is anybody here?” Was it time for me to go down and make her lunch or a cup of coffee? It took away a lot of my concentration and pleasure in my work. My conscious mind was always so preoccupied with my mother and her welfare that it didn’t have much room for anything else.

I tried to get back into jogging, and did for a while: I’d go out in the morning for forty-five minutes or so and was usually back in time to get her up and make her breakfast. But soon my thyroid condition made that impossible.

I was able to keep up with my reading, because I could take a book downstairs while we sat with her at night. Still I didn’t want to start reading anything too challenging because my attention was split, and I missed being able to relax in my own chair, in a quiet living room, and read without interruption for a few hours. I couldn’t relax in my own apartment because I felt that when I wasn’t working or sleeping I needed to be with her, and that was true.

After her last fall, broken hip, and subsequent move to assisted living, I began to relax and be interested in things again. I found a new interest in crocheting. I wished I had discovered it sooner, as it might have helped me to relax and have something else to concentrate on; but on the other hand, I might not have kept up with it or taken to it so quickly while I was distracted by caregiving. But in the aftermath of my caregiving experience it helped me return to a sense of myself and gave me some peace.

Finally, there was therapy itself. During the second winter living with my mother, and before I knew I had thyroid disease, I felt at the end of my rope. So I went to a therapist. I had done it before, so I wasn’t nervous about it and I knew it could be helpful. I talked with her about how conflicted I felt and told her that I didn’t feel I’d ever be able to put my mother into a facility. It was while I was seeing her that my mother broke her hip, went into the hospital for surgery, and was admitted to rehab. At that time I still believed that she would be coming back to live with us when she finished her rehabilitation. I told the therapist that my husband and I hadn’t been able to get away at all for the past year and a half. The best thing she told me was to do it.  “Your mother is in a safe place,” she said. “And if you don’t visit her for a couple of days, she probably won’t even remember it.” Just her saying this gave me new hope and energy, and my husband and I planned a weekend in New York,  something that helped renew both our spirits.

As it turned out, my mother didn’t come back to our house, and I didn’t have to make an agonizing decision. The move became inevitable when we knew she couldn’t walk again. The relief I got from having her in a safe place and knowing that she was content there was the best therapy I could have had. Looking back, I remember what it was like, the despairing moods and the uncertainty, and I feel grateful for the ways I found to help me get through it.


  1. I'm so glad it has all worked out for you and your mum in the end. It's so stressful caring for somebody you love. It takes more out of you emotionally than anyone who hasn't done it can understand.

  2. "Empathatic strain". That really says it all doesn't it? However I know from your writing that although stressful, you wouldn't have changed anything. You did all the right things Elaine, and I am glad the timing worked that you were in therapy at the turning point and time of transition. I'm sure it helped immensely. Bet ot you and Tim and God love the caregivers of this world like you.

  3. That's a lot of stress. My. Of still lives at home but is mobile and she has a few people coming in here and there. I go out weekly. But I live on the edge, waiting for the phone to ring.

  4. Taking care of my mother during her terminal illness was heartbreaking and stressful. After she passed away, I realized that I probably missed moments of quality time enjoying her, because I worried so much about her.
    It was one of the most difficult things I have ever had to do.

  5. This reminded me of the way it went with my wonderful mother in law. My husband and I did the best we could, but after she lost both her legs we had to put her in a home. It was nice to know that she was cared for better than with us. Our first trip out was about a year and a half. It was as if we emerged from a dark hole. Thanks for your insight.

  6. "empathic strain" That sums it all up so well Elaine. Your journey with your mom and truly been a remarkable one. I'm know you've found some sense of peace/resolution with your mom's place now and I hope that the list of things to replenish you physically, mentally and spiritually continue to grow and benefit you. You deserve it!