My Epic Love & Death Summer Road Tour: Part 1

In which I'm reminded that life defies planning

Image by ErikaWittlieb from Pixabay

As the saying goes, “If you want to make God laugh, tell Him your plans”

I had everything organized days in advance: itinerary set; hotel rooms reserved; house sitters booked; medical appointments scheduled before and after the trip; my husband’s suit and my mother-of-the-groom gown perfectly tailored; packing list completed to the nth detail; car tuned up and ready to be loaded with luggage, water bottles, and road snacks.

We’d leave on June 7 to drive from our home in Boise nearly a thousand miles south to San Diego, stopping at points along the coast to visit friends and family before attending my elder son’s wedding on Coronado Island on June 14. Then we’d return via Las Vegas and be home by June 19. All set.

On June 2, I got the call I thought I was prepared for

I’m the youngest of three sisters. One, the eldest, lives in a lovely facility in Gilroy, CA, with her husband, both of them at similar points on the long slide into dementia. The middle sister, in the mid-coastal town of San Luis Obispo, had been suffering for seven years from a rare neurodegenerative disease, corticobasal syndrome.

Once a gifted teacher, world traveler, devoted grandmother, and general life enthusiast who delighted in connecting with everyone she met, she could no longer walk, move unaided, read, or do anything for herself.

She’d lost the ability to press the button on her lanyard to summon help and depended on the vigilance of her caregivers who saw to her needs 24/7. She still recognized her visitors and loved to greet them, yet could no longer speak intelligibly. She could no longer read and had to be spoon-fed softened foods and thickened water.

She’d been in hospice for nearly a year. I’d gone from desperately wishing her struggle were over — that this half-life that was nowhere close to good enough for my brilliant, vivacious sister would end mercifully and quickly — to finally accepting that my opinions and rants at the Universe held not one whit of power. Her journey would reach its conclusion in its own time.

When the end came, I’d be ready. Or so I thought.

“I’m in the hospital with Mom,” said my nephew over the phone

Her oldest son’s voice, ragged with emotion, barely rose above a strange, rhythmic, unearthly noise in the background. Sue, my sister, had aspirated a mouthful of food during dinner and now it was lodged in her lungs, beyond recall.

“What’s that sound?” I asked, unable to process what I was hearing. “Is she on a machine?”

She was not on a machine. It was the sound of my sister struggling for her last breaths.

The equanimity I’d cultivated for so long evaporated in an instant. I flew from room to room, throwing things in a suitcase, stabbing at my laptop as I searched for flights, falling at intervals into my husband’s arms as I sobbed.

It was Saturday evening. There are no direct flights from Boise to San Luis Obispo. I got there as soon as I could, which wasn’t until noon on Sunday.

My sister died while I waited for my first flight out that morning — but all three of her sons were with her. While I was too late to bid her goodbye before her last breath, it was good to gather with my nephews and others in her circle of family and friends — and help them discuss the next steps.

Dementia stalks my family in many forms

At the same time, my nephew’s father — my sister’s ex-husband — was at death’s door. They’d expected him to be the one they got the call about that weekend, not her. His brain ravaged by Lewey body dementia, he’d suffered a bad fall the week before and had been bedridden since, refusing to eat and dwindling rapidly.

I don’t think God was laughing, not really.

Memorial plans for my sister were still in flux when I flew home the next day. One dilemma was what would happen when my elder sister — the one in Gilroy, who has Alzheimer’s — learned of the death. Her only son felt strongly that she and her husband deserved to attend the memorial, but none of us were certain how or if either of them would be able to process the loss.

He delivered the news as gently and patiently as he could. And then the phone calls started. My oldest sister hadn’t called me in over a year — she seemed to have forgotten she could — but now I was getting her calls in clusters, every five to ten minutes. So was her son, and so were my other nephews.

Each time, she’d just learned of her beloved sister’s death for the first time — one of the cruelest aspects of Alzheimer’s and exactly what we’d all been worried about. The calls would stop for hours, or a full day, until something, perhaps one of the many scraps of paper she’d written on, triggered another cascade.

Amid this her husband, formerly a practicing Buddhist and meditation teacher, arose one night in the wee hours, convinced there was a fire in the building. He ran up and down the hallways in his underwear, hollering and pulling all the fire alarms. Their facility, which has been nothing but kind and patient, made it clear that it was high time to transition them both to memory care.

Taking them hours south to the memorial was looking less and less like a good idea.

At home, I was busy rearranging our previous arrangements

The wedding date was certainly fixed, but the date for the memorial kept changing. The church my sister had selected for her service was remodeling its offices and its internet was down. Her reception was sure to be attended by dozens if not over a hundred people, but the venue she’d wanted — the famed Madonna Inn on Highway 101 — was tricky to book.

I returned home on June 3. I was scheduled for a colonoscopy on June 4: that needed rescheduling. Then the memorial was confirmed for June 20 — but we’d planned to be back home in Boise by the 19th, and our house-sitters weren’t available after that date.

I had another medical procedure slated for the 21st, which had to be rescheduled too. Then there was rerouting our route home from San Diego to take us back through San Luis Obispo, and hotel rooms to cancel and others to reserve.

My sons, who both live in Denver and have intense work schedules, tried to figure out if they could fly back home from the wedding (and the older one from his honeymoon) and then fly back to California for their beloved Aunt Sue’s memorial.

Meanwhile, who was going to take care of our animals after our house sitters left?

Such niggling practicalities served as a great distraction during the first searing days of loss. The nights, not so much. I lay awake in the wee hours, trying not to listen to the yammering voices in my head while I sampled the strange air of a world that no longer contained my sister.

By June 5, everything had sorted itself out

Between grief for my sister and excitement for my son and his bride, my emotional state resembled saltwater taffy being stretched in all directions by those old-timey machines you still sometimes see at boardwalks and carnivals. But we were all set, and still on schedule to head out on June 7.

We looked forward to getting on the road, and to our first stops in Northern CA where we would reunite with dear friends of many years. And I looked forward to having the mental space to process all that was unfolding as the miles of sagebrush and tumbleweed transitioned to Douglas firs and granite outcroppings in the Sierras and then to the redwoods and eucalyptus of our old stomping grounds.

On June 6, our dog got sick.

She retched and roiled, her innards suddenly turning to water and everything north of her large intestine erupting out of her mouth. Our house sitters were recent high school graduates, competent and self-possessed young women, but it was hardly reasonable to expect them to deal with all that our dog was currently dishing out.

What to do?

Join me for Part 2, that’s what.