I have said many times that this journey is cruel and so totally unexpected. However, the people I have met on this journey are AMAZING.
I am always surprised that there are so many of us on this journey. I have high school friends, church friends, college friends and then there are the wonderful new friends that I have made at the support group I attend. Valerie, our fearless leader, reminded us that we started meeting last Fall with around 7-8 members. Today, I sat in a room with close to 20 caregivers. We are all in different places on our walk but we are all together for the same reason. We are there because we love someone with dementia and from time to time we need to be propped up along the way.
Our group had the privilege of meeting with Teepa Snow last Friday before she spoke at the Beeson Forum on Saturday. If you missed my previous post, you may not be aware that Teepa is the dementia guru. She has the ability to take a terrible disease and make us laugh at our situation. She answered our questions; like why does my dad think my mom has a boyfriend? She walked us through emotional situations; like moving a parent from their home in one city to an assisted living community in another city. She is amazing!
Did you know that one out of five families will be touched by dementia? That is a staggering number to me. None of us think that we will be faced with this disease. We all picture ourselves riding off into the sunset with our partner. Unfortunately, everyone does not get this privilege.
On Friday, we learned that some of our new friends were still getting use to the idea of a loved one’s diagnosis. None of us ever want to accept the idea of dementia or Alzheimer’s but the diagnosis is still quite raw to some. We listened to their stories and we weep with them. We remember our own family member’s story.
Teepa told us there were 5 stages we would pass through after we received our loved one’s diagnosis. The first is DENIAL. This one is easy to understand. No one wants to accept the fact that our father/husband/wife/daughter is slipping away. The second is ANGER. Yep! I understand this one too. I sat in my car in my garage in December and cried because I could not stand to think that one day my dad would not know me. Anger is easy and it can go on and on. The third step is BARGAIN WITH IT. This is sort of like a prayer that we have likely all prayed before. It goes something like this: PLEASE, PLEASE, PLEASE let my ____. If we could bargain this disease away, who would we give it to? We would not wish this disease on anyone! The fourth step is SORROW. We feel sorry for ourselves and our loved one. We mourn the life we will not have together. We mourn the loss of our ride into the sunset. The fifth stage is LET IT GO. We have accepted the diagnosis and we know that we cannot bargain it away and we must live with the diagnosis. We must face the fact that we do not get to ride into the sunset. We have to let it go and find the joy where we are. We have to let it go.
Now that we are all humming the theme song from the movie Frozen, it is hard to LET IT GO. It is hard to accept the diagnosis. Valerie is always handing out information to help our group on our journey. Today she shared a story that was forwarded to her.
The point of the story is that God has written our story and none of us know what God has planned for us. God is still writing my dad’s story. God is still writing my story.
As the story said, We don’t know another until we see him/her as part of God’s Story. God’s Story simply will not fit neatly into any of our categories – medical, religion, doctrinal, cultural, political, or otherwise!
My dad’s story is not being written the way I would want it to be written but it is His story and I know that it will be a good story because he is a great man.