Bob left us with one huge mystery.
Two days after Bob died, I was looking for his wedding band. Having treated many patients with hand injuries, I asked Bob to stop wearing his wedding band many years ago. He often worked with power tools and power tools and rings are a bad combination. But, now I wanted his wedding band. I wanted it on my hand. I looked where it should be and did not find it. A bit later I asked my daughter to help me find it. We looked in the same place that I had looked before. As we opened the cabinet door a piece of paper fell out and hit my daughter and fell on the floor – and the ring was right where I looked for it the first time. I picked up the paper and it was a poem that I had seen on Facebook a few times. I never talked to Bob about it. It was copied in Bob’s “good” hand writing – you know what I mean, the way we write when we know someone will be reading it or we want to give it to someone. And copying things that he read was not his normal behavior. He read voraciously, but was not a notetaker – he was an underliner. The poem was written on paper from a little legal pad, so the paper was nothing special. But the writing was special. Here is the poem.
An Alzheimer’s Request
Do not ask me to remember.
Don’t try to make me understand.
Let rest and how you’re with me/
Kiss my cheek and hold my hand.
I am confused beyond your concept.
I am sad and sick and lost.
All I know is that I need you
To be with me at all costs.
Please do not lose your patience with me,
Do scold me or curse or cry.
I can’t help the way I’m acting,
I can’t be different though I try.
Just remember that I need you
And the best of me is gone.
Please don’t fail to stand beside me
And love me till my life is done.
I read it sobbing and said to my daughter, “Have we just been given the greatest gift in the world?” Later she said that she felt as if she was reading a suicide note when she read it. Of course, it was not suicide, but that is how personal the poem felt to her. Later when my son read it he said, “Smart people research what is going on.”
I had been wondering for a couple of years whether Bob was forgetting things too much, but I attributed it to just getting older or selective hearing! Sometimes I worried about it and asked my children if they thought their Dad was any different. I was trying not to lead them but trying to get confirmation or correction of what I was wondering. I never got any confirmation from them, so I assumed he and I were just “getting older.”
Was Bob asking himself the same questions? Was he wondering the same things that I was? Were we both scared in our own worlds and not sharing that bit of fear? We will never know. But my children and I all believe that this was not a meaningless poem to Bob.
I shared this with some close friends early on and without exception they all instantly believed that Bob knew something was not right in his head. They all believed that he had Alzheimer’s – early and undiagnosed, but Alzheimer’s none the less.
What a whammy that was! And that knowledge has really affected my grieving! How can I be sad when I have just been spared the pain of watching and caring for my husband as he goes through the agony of Alzheimer’s and he has been spared going through it. That is something to rejoice about! But all of the pain of loss is still there! But I did not want him back if that was the future we would have had. I went through a long while feeling confused about what I should feel and what I felt! Being thankful for his death seemed cold, but, if he did have Alzheimer’s I am more thankful than I can say! Bob and I often said to each other that we hoped we would spare our children the horror of Alzheimer’s. Oddly, we never mentioned sparing each other from it. And, while being thankful for his death, I felt (and feel) such a hole in my life. Knowing (I know I really don’t know, but I have a different kind of knowing, and it feels very certain) what the future would have been I have felt at times that I should not be sad. Of course, that doesn’t work. But the feelings were all strong and opposite – thankfulness for the gift and devastation at the loss, so sad that I was alone now and so happy that Bob was not here and is now whole – hard to hold those feelings at the same time. I think that confusion has made some of the mourning happen in an odd way. I am just now (about 8 months since Bob died) feeling the excruciating loss of hugs and endearments and closeness, of sharing coffee wordlessly and planning our week together. Most people talk about the anger that those who are left behind feel. I am good at burying my feelings, but I do not believe I have had that anger. I have truly felt that this was a gift. A gift that spared Bob the agony of losing himself, that spared me from having my husband here physically but not spiritually, that is allowing me to go forward with projects that I started before he died and that he and I were excited about that I could not be doing if I were caring for him. And to talk about the death of a spouse being a gift, just feels wrong. Thanking Bob for dying also feels wrong, but I do believe we each have some control over our death. He gave up seeing his grandchildren grow up to spare us the pain of seeing him. Confusion for me is a big part of the grief process!
This heart-wrenching poem brings me comfort, heart ache, and questions. Why did Bob copy it? Why did we not talk to each other about it? What could I have done? What did I ever do to deserve such an amazingly selfless gift? I have a lot of questions for him when we meet again!