HARD LESSON LEARNED

I’m learning more about dementia/Alzheimers than I really ever wanted to know.  My personality is such that I want to read, watch documentaries, attend support groups, join in webinars, take Zoom classes, and dig into the subject.  Do I think I’ll be better as a caregiver if I do this?  I guess.  And that’s my goal—to be a loving, gentle, and kind caregiver to Bob with 1 o. 

But day to day living with Bob is the biggest way to discover what dementia/Alzheimer’s is really like.  No amount of preparing can really prepare you!

I always thought the Bob would be able to hang on to the memories that were important or meaningful.  Doesn’t it make sense that special memories have a special place in his heart, and nothing can erase them? Obviously, I thought those memories would be embedded permanently in one’s heart.  I know when I think of significant memories, my heart feels the love, pain, pride, happiness, joy, and even the sorrow of those memories. Aren’t those memories part of one’s inner core?

Well I can tell you that they aren’t.  They only exist in one’s brain and because Bob’s brain is so atrophied and damaged, those memories don’t exist for him.  No amount of reminiscing, picture sharing, or even praying can bring those memories back alive in Bob’s brain. They don’t exist to him. They are gone just like they never happened.

It’s hard to believe that most of memories of the life we have lived over the last 41+ years is missing in his brain.  He doesn’t know where we met, where we married, where we lived over the years, who are friends were, what we did for fun, what vacations we took, what kind of work I did, what adventures we had with our families, and more. Bob doesn’t know important milestones and meaningful periods of our life.  I get so angry that those memories of OUR LIFE have been erased.  It makes me feel so very sad for BOTH of us.

So, what have I learned about the disease?  Dementia is a mean ugly disease.  It has robbed Bob of so much.  I can’t imagine what its like for him to not have those fantastic memories to look back on.  I’m not even sure what he thinks about his life.  My brain (and heart) are overflowing with significant remembrances that include him and that’s what fuels me to keep going and keep lovingly caring for him.

What fuels him?  What does he reminisce about?  What is he grateful for? What blessings does he count?