My Connections with Others Living with Alzheimer’s

During the first three or four years, I didn’t attempt to make contact with anyone else who was a caregiver to a loved one with dementia. I was influenced by the fact that Kate didn’t want anyone to know about her diagnosis. At that point, I had been involved directly or indirectly with caregiving for our parents for 22 years. My mother had dementia, and Kate’s mother had vascular dementia. Because of this experience, I didn’t feel an immediate need for any special support.

As time passed, I felt a need to connect with others going through the same or similar experiences. I did a little reading. Jan’s Story was the first book about Alzheimer’s that I read. I think the second was Still Alice. It wasn’t long after the diagnosis that I visited the caregiver forums on the Alzheimer’s Association website. I was immediately discouraged by what I was reading. I found the personal experiences too depressing. These stories were far different from our own. Later on, I joined one of the Memory People groups on Facebook. All of these are valuable sources of support and advice. They were just too depressing for me. I still check in once in a while, but I am not a regular visitor to these sites.

Early in 2014, I told our children about Kate. Later in the year, I told a few other close friends. I felt as though the word would begin to circulate. That made me more comfortable talking with other people in my shoes. One was Kate’s cousin in Texas whose husband had passed away two or three years before. There were also three other men who lived in Knoxville and caring for their wives. I connected with them and maintained periodic contact until their wives passed away. One of those has kept up with me since then. I think we will continue to communicate once in a while, but he has recently remarried. I believe he should be looking forward and not reliving what I know for him are painful memories.

I have one other Rotary friend that I communicate with mostly by email. He and his wife don’t get out as much, and she is reluctant to have a caregiver. That means we don’t get together face to face.

I also know a member of our church who is caring for his wife. We have spoken on the phone several times. I check in on him from time to time, but I have gotten the impression that he isn’t seeking someone with whom he can establish an ongoing relationship.

Since launching this blog, I have had increased communication with a friend, Rebecca Wilson, from West Palm Beach. We knew each other at church when we were in junior and senior high school and have kept up over the years. Kate and I used to play bridge with her and her husband during graduate school. I don’t think we have seen each other since then, but we have kept up through Christmas cards and email. Her husband has Parkinson’s. She checks this blog periodically and sometimes offers her comments and observations.

A week ago, she told me about another friend of hers whose wife has Alzheimer’s. She told me their situation sounds similar to ours and suggested to each of us that we get in communication. He lives in Florida, so we wouldn’t actually get together, but we could talk on the phone and communicate via email. In fact, he called me Friday night. He and his wife are on a short vacation to the North Carolina mountains and were leaving for Florida yesterday. We didn’t talk long, but it sounded like our experiences are somewhat similar. I believe she was diagnosed in 2012, Kate in 2011. Like Kate, his wife has had no issues with agitation or combativeness, and they are still enjoying life. I look forward to communicating more with him in the days ahead.

Even though they are not large in number, I feel a good bit of support from these connections. I also believe I am likely to participate in support groups when Kate is at a later stage of her disease. That is when I am really like to need more contact. Right now, I think my needs are met.