Wednesday, October 23, 2013

Bob is Love

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?(

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:

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.” 

Wednesday, October 16, 2013

Who Are You?

I’m back from three weeks in California visiting my sister. It was a real vacation and I so needed it. I feel refreshed and ready for work and to face Alz World again, a world that I never really leave. But gaining distance from it gives me a chance to think more clearly.

I went to see Bob right after I returned. In just three weeks he’d gone deeper than I’d expected into the well of Alzheimer’s.  For the first time he didn’t know who I was. He was friendly but I could see his mind struggling to figure out who this woman was standing before him. Finally he asked, “Who are you?”.  “Susan,” I answered and watched as this kernel of information seeped in.  He didn’t get it right away but by the middle of our time together he knew me.  He held my hand back when the recognition came.

I massaged his shoulders as he sat in the warmth of the late afternoon garden. His voice was thinner as was his body, now clearly showing ribs. His formerly muscular upper arms are almost the same diameter as mine. 

Bob eats well and enough although now he has to be fed. He forgets what food is for and plays with it if left to feed himself. So the caregivers patiently feed him and he ends up finishing everything on the plate. Where do the calories go?  It seems to be a common symptom with Alzheimer’s.

Bob's Garden
A lot of work had been done on his garden while I was away, with major pruning to let in more light. In tropical Bali the greenery takes over if it isn’t contained. We sat next to each other gazing at the flowers and lush leaves. It didn’t seem necessary to say much. Bob held my hand and stoked it. And then he said, “I think I’ll go to the whorehouse.”  “Hmmm,” I replied, “what will you do there?” After a long pause he said,  “I don’t know.” 

My husband always had a bawdy sense of humor and it seems to still be there. Maybe he meant warehouse. I’ll never know and it doesn’t matter. What does matter is that when I told him I love him he said, “I love you too,” and he looked right into my eyes.