Caregiving Blog Update - Quite Frankly, I Quit…

My last entry in this series of blog posts about being a caregiver for my husband with early onset Alzheimer’s, was almost 6 months ago. I had been journaling for years, but had only begun to finally make public, in really just surface level blogging, what it was like.

And, I was starting to feel okay about sharing this part of our lives, without oversharing. I can’t believe it’s been 6 months, but then, again, I can. I reached a point last fall, where I could no longer fake “okay” in public. I had caregiver burnout, compassion burnout, and if I am to be transparent, I had given up on having any sort of joy in my life. I was for lack of a better word picture, sinking…physically, emotionally, and spiritually.

…..and I thought I was okay.

I wasn’t okay. And my best friend and some family members, knew I was on the brink…not of self-destruction, but of losing all hope; of changing from the person who laughed readily, told stories, had hopeful visions, dreams and goals, to one sinking into hopelessness. That’s a dark place, friends, especially for me. I had never experienced so much darkness, for such an extended period of time, in my entire life.

Caregiving for a spouse with young onset dementia, is hard. It’s very hard.

There are a lot of hard things in our lives, but for my experience, because this is the season I’m in, I know mostly about caregiving in this light.

Caregiving for a husband with young onset Alzheimer’s, involves every difficult emotion that I have ever known about.

And while there are memes and quotes and sayings that try to encourage, while in this season, those are like trying to spread a salve on cracked skin that has developed calluses on the edges. They just don’t do any good, in the season.

There is a “copy/paste” post going around on Facebook right now, that is a good example of that for me, right now. It starts with “If I get dementia…” do this. There are some practical suggestions in the post, but it actually hurts to read it, as a caregiver in the throes of watching a spouse deteriorate mentally. Here’s how I would change that post…. I would make one line that said, “If I get dementia, give yourself grace that you may not know what to do.” What the post goes on and on to say is just more pressure for a caregiver. Treat me this way, do this for me, make sure I’m doing this… if I get dementia. It’s hard, it’s hurtful. I have not copied or pasted that post.

In the coming blog posts, I’ll pick up where I left off last year, and share how I pulled myself up out of the pit of caregiver and compassion burn out.

And, I will update where we are in our journey now. It’s not going to be sunshine and rainbows, friends. Some days, I cannot stand the thought of “another day like yesterday.” But, I didn’t start this section of my blog to sugar coat the caregiving experience, or to guilt any readers into feeling like maybe something is wrong with them, if they aren’t grateful for the opportunity to be a caregiver. I have never used coarse language, but I will tell you, caregiving for a spouse who once loved you, who hasn’t recognized you for years, sucks. It just does. But, thankfully, because of my best friend and niece, to start with, I am able to share that I know now I will make it through the tough days, however many there are, and all the tough, shitty decisions and emotions that are part of and also looming in every day. And, I have actually experienced how to find joy, how to reclaim my health, to the best of my time and ability, despite the overwhelm and stress of caregiving for my husband with young or early onset Alzheimer’s.

Thanks for being here.

Anne