In 2020, my 59 year old husband was diagnosed with Early Onset Alzheimer’s. As a caregiving wife, I turned to writing about my journey to help process it myself and possibly help others on a similar journey.
I made a post on Instagram, and people commented so kindly about what a great attitude I had, and how strong I am and that I’m really approaching this journey with grace.
But, I want to be really transparent with this blog post about being a caregiver wife to a husband with young onset Alzheimer’s. I had over 18 months of all the emotions I talked about in a previous post. The day I posted that on Instagram, was a “good” day, when I had had some time to reflect and appreciate what I did have. And yet, I really struggle to find that peace and calm.
Early on after my husband lost his ability to drive, but for all appearances looked pretty normal on the outside, I wanted nothing to do with this part of my life walk. Nothing. And, I’m telling you this, because I would come across discouraging blog posts or message threads early on, when I was looking for hope for all the things I was feeling. Let me just tell you, even if someone has the same disease, your journey is your journey. It won’t look the same as someone else’s.
Several people sent me to a youtube channel of a woman who appeared very much in love with her spouse with a young type of dementia, and in the videos, he looked so happy and lucid. And, I would look across the room at my husband of 37 years, who sat scowling at me from the couch, whose young onset Alzheimer’s caused him to be paranoid. He imagined I had had an affair, and that was the look he gave me. And, even though I knew it was because of the dementia, he couldn’t control it, it hurt. And, I couldn’t relate to those videos. I was not “in love” anymore, even if I did love him. I felt abandoned, hopeless, and unloved.
And, that made me feel all the more isolated. It’s a wicked situation to know that if dementia wasn’t eating away at his brain, he would know he still loved me.
Even though some days, I can talk calmly and rationally about being a caregiver, losing my husband to young onset Alzheimer’s, even though he is sitting only 4 feet from me right now; it’s because I’ve had a lot of time to work through my emotions. I don’t like it, but I can’t control it. So, I have to learn how to live as best I can. And, I’m not as strong as I appear.
Caregiving has taken a toll on me, emotionally, physically and spiritually. The fact that I can look forward now and know that I will understand this part of my life in the years to come, has been a long fought battle in my mind. I still don’t like it.
