How Writing Helped Me Begin to Cope with Being a Full-time Alzheimer’s Caregiver

My husband was diagnosed with Early Onset Alzheimer’s Disease at age 59 and I’m sharing what it means to be a full-time caregiver for someone with this cruel disease.

One of the healthier ways I've learned to cope is through writing. There are many things I could have used and didn't, because I was afraid I would develop a habit that I would have to deal with later on.

I had been keeping digital notes about the changes I was seeing in my husband's disease progression. This was really important early on, because there were days when I wondered if it was all in my head. Maybe I was the one who was ill. But, then, I'd think through it all, the doctors' appointments, the evaluations and come to the conclusion that I didn't have dementia. After all, my best friend would tell me, right? Or, maybe she has, and I didn't believe her. Those thoughts went through my head in the early months.

I would finally look through my notes and they would ground me, show me the reality.

I know it sounds bizarre, but there's a reason studies have been done on the effects of stress on caregivers of someone close who has a disease like my husband's. That first year, my thoughts were so muddied, so foggy. So, I started writing as one of my relief valves.

I was sitting, a whole lot more than I'm used to, always present somewhere my husband could see me. I was learning to embroider again, and doing some hand stitching and knitting. But, I felt I needed to write out how I was feeling. Sometimes he would sneak behind my chair and read over my shoulder. I didn't want him to feel badly about the changes that were happening to him, or how hard it was on the rest of us.

One day, I started writing out my journal in third person. And, that was a significant tool for helping me pivot from a path of constant sorrow to a path of healing.

And, if he happened to sneak up and read what I was typing, it just looked like a story.

What does that look like? I just write what is happening around me, as if I'm the observer in the room. I'm not writing a book. I may just delete all of it at some time. But, in the last 8 months, I've written over 200,000 words, just observations. I don't worry about grammar or having it make sense to anyone but me. Some days, when I am the only one home with my husband, and he's pacing nonstop, and I can’t concentrate on work or reading, I sit in my chair and type.

As an example, if this will help anyone, it can look this.

The woman sat in her favorite chair, trying to find a comfortable position so her back didn't ache. The chair really wasn't that comfortable, but it allowed her to swivel around and keep an eye on what her husband was doing, without appearing to be monitoring. Her chair was on the west side of the house, by the wall of windows. She could see her husband's reflection at the second story railing, watching over her. He never really spoke to her anymore. Maybe once a day, he would look bright, ask her if he could help with anything, like nothing was wrong. It only lasted a few minutes, sometimes even just seconds, before he was back in the dementia fog.

I cannot tell you how much this one simple thing, switching from a journal entry in first person, to a journal entry written like a story, helped me evaluate and cope, as well as chart a healthier path for myself. I don't want to be a caregiver statistic. I don't want my response to this 24/7 stress, to create lasting chronic conditions in my own body.

I hope that helps someone. Write it out. No one ever has to read it except for you. It doesn't change the course of the disease, but it might help you like it's helped me.

Anne