69

Mom died 69 days ago.

I thought longer than I care to admit about how to phrase that. Mom left us 69 days ago? Mom high tailed it to heaven 69 days ago? Mom changed forms 68 days ago? Mom spontaneously combusted 69 days ago?

Nothing seems right, or appropriate. 

It is amazing what a gaping hole 69 days brings. It is amazing how completely chuck full of Her 69 days have been.

We were supposed to be ready for that day, and as much as we thought we were, we weren’t. I think of so many friends who have lost parents in the last year or few, and I remind myself that we were so lucky to be afforded goodbye, however rushed, tragic, beautiful, and final. I find solace in knowing, you always wish, even in the most unhealthy of situations, you could have said that one thing.

I see you: her friends, her people, everywhere. It is wonderful and awkward and exceptionally difficult, and a quiet and beautiful reminder of her steadfast presence. I dive behind a grocery store display hiding my tears from you, and I leap into your arms at the difficulty and shared awfulness of doing this life without her.  Many of you see me, remember her, and burst into your own symphony of tears. I’m used to it now, and rest assured; it is still better than saying, doing nothing. It gets us both somewhere. I still cannot see my own tears coming, eight months practiced.

We hear again and again and again: “It was just so fast, I thought I would have another chance to tell her I loved her, to say goodbye….” 

To you, I say this: it was fast. Even sitting daily in the midst of all that cancer; growing, taking things over, making her and all of us crazy and aligned and desperate and simultaneously retreating and lockstep… it ended in retrospect in much the same way it started, startlingly, astoundingly fast.

It ended so fast the Hospice Case Worker wept in our kitchen, upon rushing to the house to find Mom doubled over in pain, completely blind.

To you, I bear the responsibility of sharing so much, and for the past 68 days, I turned inward and left you all hanging, not knowing the answer to the inevitable, “what happened?”

Mom died.

It is our humanness that asks the ‘how’ and ‘what’ and ‘why’ questions; our desire to simultaneously understand that which will never be understood and to allow forgiveness or peace for missing a final moment, speaking our truth, saying farewell. To you, I know deep in my guts: Mom would desperately want you who feel cheated at goodbye to know: she left on exactly her terms, 24 short hours after proclaiming she was ready, and done here. And you did everything you could.

Thanksgiving (November 28) was a good day. She joked that she ate collectively more in one meal than she had in six months. Her vision blurred. We carried on a deep, fulfilling conversation until she needed rest. Soemthing shifted toward peace in her head that night, yet I wasn’t sure how, or what.

Her sister Sally arrived shortly after I left to spend the night; it was among her least eventful. And then, at 6 am, it suddenly wasn’t.

I slept hard that night, easily the longest, hardest stretch of sleep I’d had since diagnosis day. I awoke to sun streaming in our bedroom window, flipped over my phone to check the time and saw many missed calls. In a complete panic, I threw on some sweats, and rushed there. It was 8:45 am. Mom was completely blind and paralyzed along her right side; her eyes greyed over and completely empty, like she’d suffered cataracts for years. She was in so much pain she begged Sally to rip into her morphine. Sally made a heroic and largely successful effort at keeping her out of a complete panic, until I arrived.

I put my hands in hers, told her I was there. She wanted to know exactly where. I placed her hands on my cheeks. She cried, told me she loved me, and apologized again and again for this; for it being this way, me caring for her.  She repeated over and over, she was ready, I needed to, “get her out of here.”

We began immediately between desperate calls to Hospice what is now a blur of morphine, anti nausea meds, violent retching, trying to adjust what was left of her human form to comfort, and entertaining a parade of relatives including her Dad, as they said goodbye.

It was frantic, painful, desperate, indescribable, and awful. We could not keep up with her pain; we could not get the morphine in her quickly enough to bring her any level of comfort. 

I talked to her in between morphine doses about going back on our plan of her passing at home, and instead heading to Hospice House so they could help keep her comfortable. She agreed. I asked her to tell Dad, and when they arrived, my siblings. She did. In the few precious seconds between doses when the morphine worked its magic, we laughed. She cracked jokes; my pants were on backwards, she needed a BigMac.

Those moments now, are the ones I cling to. It will prove cathartic writing, and then releasing the rest.

We arranged her transfer, and Cale pulled in the driveway, the ambulance behind him. She wanted all her kids home before she left. We were able to briefly make that happen, and Cale rode alongside her.

She was admitted around 12:30, November 29, and on her way to being fully sedated and comfortable by 2 pm. Every grandchild had a moment alone with her, to say goodbye.

At 9 pm that night, our nurse approached as I was having a particularly weepy moment bedside, and said that if we elected to do so, we could back off her morphine. She explained that while it would likely be painful for Mom, if it could be beneficial emotionally for us, and if we felt the need to do so, we could elect to decrease the drip in an attempt at stealing a few more lucid moments.

Knowing where we’d been only a few short hours before, I immediately said no, to please keep her comfortable. Ten minutes later I second guessed myself and shared that with Dad and my siblings, and all their initial reactions matched mine. 

We traded spaces at her bedside until morning, counting respirations, swabbing her mouth, laughing at her chomping at the sponge, talking to her, and intermittently pretending to sleep. We all wound up stuffed at her bedside by morning, caressing, and encouraging her transition. Her respirations had not changed all night, and yet as I rubbed her legs, I suddenly knew much of her was suddenly gone. At that exact moment, Cale verbalized the same: she’s going now. Her breathing slowed significantly and then there was nothing. Until there was a huge, gasping breath. And another. As she inhaled the second time, her eyes popped open. They were full of color, grey cataract eyes gone. She scanned the room, turned, locked eyes with Cale, and was gone. The flock of birds congregating around the feeders outside her window flew off.

Hindsight, retrospect, desperation for understanding, lead me to hypothesize Mom had a stroke. Strokes, blindness, paralysis were all potential side effects from her last drug, but she also had a brain aneurism discovered a year prior.

I do know this: whatever it was, allowed her to transition quickly. That feels now even 68 days later in this sea of quickly changing emotions, still feeling a lot more blessing than curse.

Living here without her is a balancing act of channeling her presence, thoughts, disposition in moments and conversations, looking sometimes desperately for signs, and a deep hallow emptiness that feels like surely she’s just vanished, and up and left us here alone. 

I feel connected and sane when I choose to believe she would never leave us here, especially now. I feel something teetering perilously between anger and nothing in the waning moments I believe she did. When I wrap myself in the luxury of her showing up in a sunset, a flock of cardinals outside my kitchen window, sending her people in for a hug at just the right time, or hearing her voice come out as mine in direction to my kid; somehow one foot continues to plod along the other, and some days, laughter even finds me.

***

At some point in the near future, I will shut down and archive this site. I will continue to write and post to my personal website: www.alisonmdoyle.com/blog for those of you interested in following along.

We have mailed literally thousands of thank you cards for everything from meals, plants, to memorials, to 5K contributions. If you have yet to receive yours, it is entirely possible that we had trouble locating your address, or something was returned. If you are among this small handful of folks, I extend my sincere apologies, and many, many thanks. While the process has strung out over the course of two (plus six) months and underscored with each stamp, address, message just how many of you Mom touched, I am finding it necessary to publicly declare this task complete as best I can possibly muster.

And finally, for those of you following along the Avastin insurance reimbursement saga, we are still not so patiently awaiting final billing and confirmations/denials.

I am also desperately chasing Mom’s medical records from a practice she received treatment from in West Des Moines prior to her diagnosis. If anyone has any good ideas on how to get those, short of hiring an attorney and going to court, I’d appreciate it if you could send me a message. I have filled out and presented all the necessary paperwork multiple times and have been following up weekly to no response/avail.