Alzheimer's walk speech

Yesterday, I was one of the kick off speakers at the Alzheimer's Orange County Fundraising Walk a Angel's Stadium in Anaheim California.  I had three minutes to share my "story". 

It was exciting to speak in front of a group who all feel the same pain.  The pain of watching a family member die from such a tragic disease.

Today, I went to visit Gary.  He was more awake than I've seen him in months.  He actually moved his hand toward me and grabbed my hand.  He would not let go unless I pried his hands from mine while I fed him.  As I sat at a table with other Memory Care residents and their adult children, I realized that I am the only young person represented there who is married to a resident.  The rest are all children of patients.  I try desperately to not be so happy.  I try to be upbeat and make them all happy. 

I asked one of the angels to tell me what he weighs now.  145 pounds.  When he moved in to the unit in June of 2016 he weighed 175 pounds.

As I fed Gary, he seemed to follow me.  I got up at one point to get him a tissue, his eyes followed me.  This was new.  He needed a tissue because his nose was running and then I realized he was crying.  I have no way of knowing why.  That is torture.

As I decided to leave, I hugged him and kissed on him and told him that I would be back for the Thanksgiving meal.  I felt guilty to leave but had things to do for my normal life. As I walked toward the door, his eyes followed me. The guilt killed me.  I went back and kissed on him and said, "Gary, I am leaving now.  I will be back on Thursday for the dinner.  I love you.  If you need to go see Jesus before I get back, its okay."  Then, I felt guilty for saying that.

So many people read my blog and make comments about what a good and loyal wife I am.  Bullshit.  I feel so guilty when people think I am a good wife.  I might go visit once a week but the truth is:  I want a new life. I want a new love.  I want to be appreciated and feel valuable again.  I am a 54 year old woman who is vibrant and deserving of better.  If that is selfish, I am sorry.  I am not a saint.  I want love.  I want sex and I want a life beyond the prison of Dementia. I want hope for the future.

I digress,  So, back to saying good bye to Gary today. I left him at the dinner table. As I reflected on the day, I recall that I am probably one of the senior "caregivers" for people on the unit.  Gary has outlived a lot of the folks there.  I am close to running out of money to keep him there.  I often think that I will run out of money on the day he dies.  I hope so, as I don't know what to do beyond that day.