On Tuesday this week I reached a milestone: 18 months since Bruce’s passing.
It was a different experience than last year when the loss was so fresh. Looking back at my journal for that day, I recalled so many sensory details, the small events that made up the day, the sense that time was moving at an irregular and erratic rate. Bruce was “pretty far under,” not able to communicate even with hand squeezes. His brother Ken, who’d arrived in Walla Walla the night before, visited that morning on his way home to Portland.
Once Ken had left I went through the ritual of opening our Christmas presents, thanking Bruce for the things he’d ordered for me a couple of weeks earlier and telling him about the gifts I’d chosen for him. He’d wanted a new lap robe for winter evenings in the recliner, when he’d read to me and the 4-legged kids, and had been very specific about the design: one color, no fringe, not too big. I rubbed the dark blue fleece on his hands so he could feel how soft it was. At five minutes to midnight, he was gone.
I’m sorry. That’s so sad.
Thanks, Lily. Yes, it was sad, but it was also the time when I felt my love for Bruce more deeply than ever. Hard to explain, but. . .
That’s okay. You don’t have to.
To commemorate the 18-month milestone I decided to do something positive and forward-moving. June 23, 2020, is the day I started online training as a volunteer for Walla Walla Community Hospice.
Isn’t that kind of hard on you?
No, Lily, not at all. Some of the videos I’ve watched with personal stories of hospice patients and their families have made me teary-eyed, but I’m smiling, too. Hospice is a holistic approach to making what’s left of a terminally ill person’s life as fulfilling as possible. A team of specialists work together to address physical, emotional and spiritual pain, but there’s more to it than that. The patient decides what’s important to them for the time they have left. I know it’s hard to think about dying when you’re fourteen- –
Or nine. So think of it this way: if this was your very last day, what would you want to do?
I’d read. And I’d make a batch of streusel topping and sneak it up to my room.
Not me. I’d go to the park and recite Viola’s monologue from “Twelfth Night” to anyone who walked by! I’d wear my poets blouse and braid my hair a couple of hours earlier so when I brushed it out it would be big and frizzy for the performance.
See, it’s not so hard to imagine. In one of the stories I watched, a man who only had a few months left made it his goal to go to every one of his twin high school senior sons’ football games. Lots of people from the community pitched in and helped him achieve his goal.
It makes me choke up just thinking about that- -end of life dreams achieved with the help of others. Bruce’s time was very short, 12 days from prognosis to death, but he did set goals for himself. He was in the hospital when we learned he had ten days to two weeks, so his major goal was getting home. We had a week there together, with our pets to comfort him and some wonderful visits from friends. His second goal was to see his brothers, both of whom lived a few hundred miles away. In spite of icy roads, the tight time frame and the encroaching holiday season, they both made it in time.
Hospice made our time at home possible, with medical and counseling support, providing medicines to control pain and home health equipment to make Bruce as comfortable as possible. The CNA was there every weekday morning to bathe him and change the linens on the hospital bed. The on-call nurse helped me through a series of rapidly evolving crises, both over the phone and in person. When I asked her what to do when Bruce died she said “Call me. I’ll take care of everything.”
There’s so much more I could say but I’ve said it all before. The important thing now is, I’m ready to joyfully give back to patients and families who need someone like me to help make the end of life as good as possible.
But you’re not a nurse or a CNA or a social worker. What kind of a specialist are you?
Good question, 9. I’m training to be a patient support volunteer. My job is mostly to provide respite for the patient’s caregivers. I’ll visit with the patient- -talk to them and, if they want, read to them, so their family members can take a break and won’t have to worry that their loved one will be lonely. It might involve helping with gardening or taking care of the patient’s pets if needed.
You could even recite Viola’s monologue!
I could, Lily, if there was demand for it. The way I see it, it’s about getting to know someone at a very interesting time of their life. That’s really my specialty, regarding a terminally ill person as being a complete, fascinating person with a lot to share. I have no idea why I’m like that, but I’m like that.
I believe it’s a gift that’s important to share.
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When my mom was in the process of dying, she asked her Hospice patient support volunteer to write down her thoughts, dreams for her daughters, and family history as she orally said them aloud. What a beautiful thing to have after my mom’s death! You will be richly blessed and will richly bless those whose lives you touch. Thank you for sharing such a raw account of your experience with Bruce during his last days. He is watching over you…
What a beautiful idea from your mom’s experience, Julie! I’ll remember this. Who knows, it might be exactly what a patient I’m working with in the future needs. One of the training videos i watched today was about a woman who wrote a bunch of special occasion cards to her young daughter, labeled for her fifth birthday, high school graduation, wedding day, first baby, and so on. I truly admire the grace and creativity some people muster to confront the end of life.
I had no idea your prognosis-passing time was so short with Bruce. That’s not enough time to process much. I’m glad you’ve had more time now and been able to share so much through your writing. Now that suffering can empower you to help see what others are going through, what they can absorb and what they’ll need help with, what they can expect and how they too will see their way through. Bravo Susan!
It was an incredibly short time, Tim. Fortunately, we had wills, directives, etc., in place years in advance and didn’t have to scramble for those kinds of things. A major help for me- -we’d read Atul Gwande’s “Being Mortal” which is all about end-of-life choices a couple of years prior and discussed how we’d deal with that (at the time we were thinking of my mom, still hale and hearty at 94, not ourselves!). I look forward to meeting patients, learning their life stories and finding out how I can help them live the best possible life with the time they have left.
I could not be more proud of you.
So kind of you, Ann. We’ll see what a sheepdog can do!
Susan; What a noble endeavor, although the times I have been part of a hospice team have been the some of the most rewarding times of my live. I’m not sure I have the emotional strength to do it long term….
I can only imagine how emotionally exhausting this type of work can be sometimes, Rick, and I understand that self-care is key to being able to do it. The rewarding times, as you say, though. . .Like everything else in life, balance! Thank you for being part of a hospice team.