I recently read an article on ‘The Alzheimer’s Reading Room’ entitled ‘How can I Possibly Love My Husband and Think of Him As I Did Before Alzheimer’s?(http://www.alzheimersreadingroom.com/2013/10/how-can-i-possibly-love-my-husband-and.html)
The questioner was grappling with grief and having a difficult time accepting her husband as he is now - in late stage Alzheimer’s. That article and the advice given by Carole Larken, an expert in Alzheimer’s and dementia care, stayed with me for days. Reading the angst in the questioner’s words, I sat back and surveyed my emotions to see how I fit with her journey in my own journey with Bob. I found I felt profound gratitude that I am where I am with this process.
For the first five years I was in denial and was sure we could fight the disease with supplements and exercise for Bob's body and brain. Slowly that denial eroded into reality as I took care of the business of making a living and providing care for Bob. I was way too busy to grieve, although sometimes the tears forced their way out.
Then in the ninth year of caring for Bob, on a respite trip to Italy, the grief kidnapped me and I spent most of that five weeks in tears, feeling I would die from the torturous grief of the loss of my husband as I knew him.
For the next few years I lost weight. I had meltdowns and finally hit the wall as a caregiver all the while continuing to make our living. And then some where along the line the peace of acceptance took root. Once I had the space of not living with Bob and Alz World twenty-four hours a day, I gained perspective and with that acceptance.
Following this came the realization that, contrary to well meaning friend’s advice, Bob is still in there. His essence, his spirit, his soul occasionally find the neuro-pathways to travel out his eyes or speech or hands. I came to realize that our spirits don’t age, don’t get sick and to see his essence when I look at him. (Read post at: http://alzworld-susantereba.blogspot.com/2013/07/ageless-spirit.html).
Now when I when I look at Bob I don’t see his sagging spotted skin. I don’t see a skinny demented eighty-one year old man unable to walk, but what I see is ‘Love’. My heart swells and I feel strongly for him and who his essence is. Gratitude actually bubbles up for what has been presented to me and while that may sound strange, it’s a whole lot more peaceful than being in resistance as I was for many years.
Bob responds to my words of love and I would say to anyone with a beloved grappling with this disease, “Tell the person you love them, over and over, each time you visit. Don’t expect any thing in return but know that your love seeps in and caresses their spirits.”