Early Onset Alzheimer's - Caregiving Journal Entry #4- Keeping Notes

My husband was diagnosed with Early Onset Alzheimer’s during the year 2020.

Because of the timing, there were no support groups I could attend. The online groups were depressing to me. So, instead, I talked to people close to me, people that would let me tell them exactly how I was feeling, with no judgement.
Caregiving for anyone is a difficult road. I don’t think any of us who are full-time caregivers really desire to compete to see who has it worse. It’s just hard, no matter your situation.

The first year was a wash of emotions for me; all the emotions. I felt like I was constantly on edge and on the verge of breaking into tears. You could ask me what I was fixing for supper, and I might feel like crying. I’ve never been that way. My family used to joke and call me ‘the rock,’ because I didn’t cry much.

One of the strangest parts of that first year of full-time caregiving, was feeling like maybe I was the one with the memory problems. Now, that may sound really odd, but I was thinking for both of us, providing an income, trying to figure out what I had to do financially to prepare for the possibility of paying for a care home or a home health person in my home. I wasn’t sleeping well, I wasn’t exercising or eating well, and there were days, when I would ask myself if it was all just me? I even thought through it one day. Maybe I’m the one with Alzheimer’s, but if it was me, wouldn’t my best friend tell me? But, what if she has and I don’t remember or didn’t believe her.

And, I was told that that might happen, by someone who had already walked this path with her husband. She told me to start keeping a written list of changes that I noticed in my husband; different behaviors, habits, and things he said.

Keeping a list on my computer, in a private notebook, helped me months after I had started keeping it. As a sole caregiver for someone with early onset Alzheimer’s, the days and weeks can blur together. It helped me to see that I needed to ask for help; that I wasn’t doing as well as I thought I was, mentally and physically. It also made it more obvious that the changes in my husband were real.

Even now, I can look back at my notes from two years ago and see not only the progression timeline in his disease, but my own health as well.

If you are a caregiver for someone with a progressive disease, keep a daily journal and make sure you have someone to talk to.
I’m still in the middle of this journey, as I write. But, I hope this helps you in some way, if you or someone you know, is going through this.

Anne