Having seen “Still Alice” in Chicago nearly the first day it opened and now having read many reviews, I know I, too, have ideas and feelings to share. This surprises me because I have firmly declared that I was not going to write about Alzheimer’s because too many people are already doing it – even before Alice. It had seemed to be a part of the purging and hopefully healing process for many people who have had Alzheimer’s come into their life. I felt I did not need to write about it because we had a remarkable journey through Alzheimer’s and a good ending. Now here I am “eating my words” and giving them to you.
“Still Alice” is a wonderful movie about Alzheimer’s – a poem in motion propelled by good writing, good directing and amazingly realistic spot-on acting. But it was intentionally left incomplete, unfinished – the audience not really knowing how Alice’s life unfolded and resolved. In some ways I was grateful for that ending to be a non-ending with a blank white screen. I had expected to go to the movie with my daughter and our friend and cry through the whole movie. They cried, but I did not! Why did I not cry? Because I did not experience Alice as tragic, I experienced her as a hero on a hero’s journey. I felt the tragic figures were her family, who except for the youngest daughter, could not rise to be the support team for their beautiful mother. The family could have deserved tears but not from me because I know we can do better with the precious lives of people with Alzheimer’s.
How do I know this so well and why are my feelings and opinions so strong? Because at 59 my beautiful husband of 40 some years was diagnosed with Early Onset Alzheimer’s at Mayo Clinic. On the same day he was diagnosed, we also were told there were no really effective treatments and no cure – to me this meant go home and die or what I chose for us – go home and creat the happiest possible life with what you have got! And that is what we did for 6 years – we accepted the unfolding and progression of the disease – fully embracing that Peter, my beloved husband, was still and always Peter and NOT the disease.
He was asked by the neurologist at Mayo to be in a 2 year trial NIH study for Alzheimer and this gave him purpose – the purpose of helping others for whom this might happen. This was a difficult and challenging study with IVs and harsh side effect but he did not care because of his intended purpose of contributing to the well being of others even in the middle of his calamity.
We were focused and determined to be able to write our good days and good ending even though both of us fully recognized that it would mean his dying early – not a miracle cure!
On the day he was diagnosed – Peter asked me with all his heart not to ever put him in a nursing home and I promised – that became my mandate and I was fierce about it no matter how many ney sayers told me – even in the medical community and Alzheimer’s support systems. They thought and had no problem sharing with me that their opinion was that I could not possibly manage and execute promise my promise to Peter – home till the end. I had much training in family service having raised 11 children so I was equally sure I could do it and also I was still so in love with this wonderful man who had always taken care of me and the children and now was asking one thing.
For the next six years we lived such an amazing, joy filled life – at Mayo it was reflected by one of Peter’s doctors who said that we reminded him of the couple in the movie, “The Beautiful Mind”. Every loss for Peter was embraced with a creative solution. I constantly interacted with Peter with respect and dignity and as much fun as we could muster at any given moment. We learned to belly life at all “our” mistakes and know that those mistakes were not who we were, but the “crazy” life we had been given!
We sat down at the dinner table three times a day and ate beautiful whole food meals – most of the time with beautiful flowers and candle light. He took non prescription supplements to help his brain. We bought a terrier and walked her on the river for a mile each day. He swam laps once a week in the Olympic size pool at the Y. We did not watch TV or the news but we watched endless old favorite movies. We went shopping together and everything was constructed for Peter’s successful participation at whatever level his Alzheimer’s had taken him
Even though his Alzheimer’s steadily progressed – which could be documented by all the MRIs at Mayo – he continued to connect and know us by name until the very last breath of his life. In his last summer his kidneys were failing and we were seen often at Mayo. The neurologist looked at an MRI of his and said that his brain was destroyed and he could not understand how Peter was still so conscious and connected to all of us – including him by name! How was he able to process so much about life? By August of that summer we had hospice coming to our home which was a total blessing for our final success of the promise. Peter was moved to a hospital bed in the living room. All the children came and he knew them all by name and when the last one came he said, “I have been waiting for you – what took you so long?”
The last words he said right before he died with eyes wide open were, “Bette, I love you!” – that would be me!
the way of the mother 