There are so many parts of this caregiver journey that have taken me months, even years, to figure out. I’ve shared about the constant grieving that I didn’t really understand for the first year. Now, two years later, I’m learning even more what “relationship grieving” is all about for a caregiver of a spouse with Alzheimer’s.

We passed our 37th anniversary on August 18, 2022. It had been a long week, with some changes in my husband’s behavior towards me, so I didn’t even mention the anniversary to him or my boys, so he wouldn’t be more sad or confused than he already was. The boys were home with him, and I went to town and got an iced tea and went to a couple of stores by myself. And, I wasn’t sad about it, it was just what it was. Another day, although significant in that we were still married, even if he didn’t know that every day.

I’m going to keep this post short, but I wanted to share a few quotes from this article that I read recently on The Unprepared Caregiver. I wish I had understood this 3 years ago, but then, not having experienced it, would I have really known what it was talking about? I don’t know. But, these quotes from that page, hit the nail on the head.

“In intense and long-standing relationships, like caregiving, we are always interacting with a composite of past experiences and memories that we can’t help ourselves from bringing with us into every present, unfolding interaction.”

“I am with someone I know so deeply, yet, it is because of our shared history that I feel more alone than I might ever have felt if I was actually, physically alone.”

“The awareness of what is happening between you and your loved one provides the foreground of your interactions and appreciation of what used to be forms the background. The challenge of relationship grieving is that background and foreground are constantly shifting.”

This last quote from The Unprepared Caregiver really hit home with me.

“Relationship grieving involves being constantly aware of the simultaneous presence of your loved one’s absence and the absence of your loved one’s presence.”

My husband is here in body, every day. But, I never know when he is lucid or not, except for the obvious occasions when he’s looking for something very familiar that is a few feet away. He left me, as my husband, over two years ago, in his mind. He looks the same, he sounds the same, and he’s here every day, but he’s not here as my husband of 37 years, whom I had dreams of an empty nest life full of adventure.

Relationship grieving. It’s the hardest part of this caregiving journey with my husband who has young onset Alzheimer’s.

Anne