We're walking the final road in the dementia caregiving journey this week. After we mourn together at my husband's funeral tomorrow, honor his military service at the graveside, and celebrate his life with a meal at our home, I know that I will be entering a new phase of life. Although I'll still provide care for my parents, it will be very different than the intensity required for dementia caregiving.
As I step into this new phase of life, this blog series is also coming to an end. I know that I have a lot of lessons still to learn and process, and I may very well write about it again in the future. Right now, though, I need to apply what I have been learning at a deeply personal level.
Over the past 2 1/2 years since diagnosis, I watched my husband surrender to the increasing levels of care required by the disease. His trust in God and by extension in me has been profoundly humbling. The depth of his humility was beautiful. His surrender was complete and total - not in a fatalistic sense, but in a simple, childhood faith way that just knew God would take care of him. I don't know how to trust like that, but I want to learn.
He also remained a worshiper to the end. Less than 18 hours before he died, he was trying to sing "Amazing Grace" by mouthing the words. Just a couple of hours before he died, the only thing that relaxed him even after medication was listening to a sermon with his daughter. So many people that came through commented on the love of Jesus in his eyes. I want to learn how to worship at that level.
To the end, he retained his love and concern for others. He wanted to know that I would be cared for and would look back and forth between me and whoever was visiting until they promised to take care of me. His last visit with his kids involved him looking back and forth at them until they promised to care for each other. I want to be others-focused even in my own trials.
For some time, we've been walking a narrowing road. His world was shrinking, and with it so was mine. Now, he's walked on alone, around the bend in the road. I'm left behind, trying to figure out how to walk on alone - and yet not alone. I have the presence of God, my family, friends, church, and 25 years worth of love from my husband to see me through.
My husband was generous and open-hearted. He embraced people whatever their background or beliefs. Our family has chosen this poem, from a different religious tradition than ours, that really speaks to what we think he would tell us. Yes, we grieve. Yes, we miss him deeply. But I want to learn how to turn that pain into a pathway for love toward others.
Thank you for walking this journey with me. I appreciate your prayers as we move forward from here. I'll write again when God guides me - for now, I want to rest, and learn how to apply all these lessons from caregiving.
MEDITATIONS BEFORE KADDISH - From MISHKAN T’FILAH
When I die give what’s left of me away
to children and old men that wait to die.
And if you need to cry,
cry for your brother walking the street beside you.
And when you need me, put your arms around anyone
and give them what you need to give me.
something better than words or sounds.
Look for me in the people I’ve known or loved,
and if you cannot give me away,
at least let me live in your eyes and not your mind.
You can love me best by letting hands touch hands,
and by letting go of children that need to be free.
Love doesn’t die, people do.
So, when all that’s left of me is love,
give me away.