waiting for death with love

Yesterday we woke to the reality that we were now home, no longer fighting an elusive enemy and knowing that in some undetermined time -- maybe days maybe weeks according to the doctors -- Tad will die.

We found ourselves sitting on the sofa with our morning coffee wondering "So what do we do now?"

In my own no doubt romantic version of End of Life I grabbed pen and paper and started a list asking him what people, places and things he would like to see or do. Fly to Hawaii? Take a drive around San Francisco? Have friends come by one at a time to say good-bye?

True to his beautiful simple self the list was very short: eat seafood on the wharf, go for a drive along West Cliff (he later struck that from the list). Mostly it was about living our life normally at home, tending the garden, going for walks, watching movies, eating yummy meals together (last night's mac and cheese with big chunks of roasted chicken was a big hit!), seeing the occasional friends who drop by....

But then later in the day he found himself feeling aimless again: Should we finish that tiling project in the kitchen? repaint the bedroom? buy something on credit?

His desires come and go.  But one thing is very clear: sleep is not a welcome activity. Tad struggled to fall asleep the last two nights and woke up bright and early, perky as ever.

His mobility has increased since we got home. He can now -with difficulty - move from room to room in the house and even take himself out for a walk in the garden.

I found myself experiencing a similar sense of aimlessness. Besides the small tasks of emptying the urinal, making meals, washing up, counting pills... I too am without a bigger project. I tell myself it's not exactly the moment to be starting some groundbreaking new plan.

One of the ways my crazy mind copes with this aimlessness is by wandering frequently into some imagined post-Tad future: what will I do with all this stuff? should I rent a storage space? how long will it take me to get through the sorrow? where should I live? should I open a practice here in Santa Cruz? Or just move back to San Francisco completely and put an end to my five and half year flirtation with this community? should I go relax in France for a few months? what about the cat? how will I ever be able to handle the day she dies? I noticed myself tossing these scenarios out to various friends in the hopes they would tell me what to do.

Fortunately I know it is not time to make any longer-term decisions. Instead I actually calm my rapid brain by closing my eyes and taking my imagination to hokey scenes of beaches and palm trees, to memories of paradise I've experienced in my fifty years. It's a short respite from my crazed brain but it helps momentarily.

At different points of the day Tad and I had the opportunity to visit the palette of emotions that come with living such an intense moment of life.

Most of the hours were filled with calm, with smiles, with loving gestures.

Other times we moved through fear when we stopped and talked about the bigger picture of what's really happening to us: what will death from leukemia look like? (mostly more and more sleep until he dies in his sleep we're told),  can we "shorten" the process if it becomes unbearable?, does it make sense to stop all the medications just because hospice's budget doesn't cover them?, should we really drop the masks, the fresh flowers and the other possible threats of infection?, is my burgeoning cough a virus and will it cause Tad to die faster?

Then there are --mostly unpredictable-- moments of deep sorrow: for instance standing at Trader Joe's (yet again) with my beloved friend Julia and bursting into tears in the frozen food section while she gently hugged and rocked me. I had a hunch it would be a tough visit and thus asked her to hold my hand while I shopped.

Then later at home crying together when suddenly from nowhere one of us uttered tearfully: "I'm going to miss you so much."

Sometimes we feel sorrow mixed with resentment when one of us says out loud the thoughts of injustice we mostly manage to avoid: "Why? Why this? Why now? Why us?"

I must say the main source of strength for me is and often has been Tad's capacity to lovingly smile. He's always had a rather cantankerous side to him and when this illness first began I feared that side would dominate. He truly amazed me by sitting through hospitalization after hospitalization with an incredible elegance: polite words for each caregiver, a playful smile even in his pain, thoughtfulness and concern for the people attending his needs.  I see today how much this smile carries me; how much it helps me get through.

During a sorrow moment yesterday he held me gently caressing my hair while I sobbed and asked whoever might hear me "How will I possibly find love so dear again?" He responded that the incredibly sweet love I get from him is simply him mirroring my love back to me. In his mind's eye somehow his love for me is nurtured by my love for him and vice-versa - like a juicy vicious circle, only not vicious.

(There's a famous couples psychologist who actually observed and quantified the amount of loving gestures a couple may exchange. He became very skilled at predicting divorce by observing when the ratio of "Love gestures" versus "contempt gestures" fell below 5:1. He observes that "masterful couples" generally maintain a ratio of 25 to 1.)

The deeper calmer part of me knows I will be fine when Tad is gone. I know that I will go through the sorrow, the rage, the letting go at my pace. I even know - from having seen many friends die tragically young - that Tad's love, his essence will be a continuous part of my inner world.


While bawling in his arms wondering aloud how I'd get by without him, he took my face in his warm hands, looked me deep in the eyes and with a big smile said, "Are you kidding me?! You have a whole world to help change!"

Perhaps we humans stay in loving couples because they help us aspire to be our highest selves. I for one am deeply grateful to have had five years and 100 days with the beautiful and loving Vern Raymond Thaddeus Crandall - who has taught me so much about love.

At the end of the day the hospice nurse came by to check on us. Tad asked her if there was someone at the hospice who could help us make plans for a memorial service. I've often imagined how after the cremation I would gather the many people who knew Tad and actually hear from them how his love changed their lives. Then it occurred to me - why wait til he is dead? "What if we do it before you die?" I asked. In his usual modesty he sort of hesitated but I could see he was also intrigued by the idea of being surrounded by love - by having his love mirrored back at him by dozens of folks.
We'll see if the seeds germinate.

In the meantime my deepest wish is that his love lives long in all of our hearts and minds, and particularly mine ;-)!

 This morning's angelic/diabolical smile!

PS - If you've managed to get this far I encourage you to leave a little note of love on here. It always helps us to be reminded of how much love we have around us.