caregiving – Page 4 – Laura Stavoe

Tending to Endings (Seven)

The first time I contacted hospice was a little over one year ago. Before I made the call, I called friend Betsy from the shower stall in the back bedroom of the condo where my parents lived in Hawaii. It was the furthest point away from my parents’ bedroom, and there were two sets of doors closed between us. Betsy is a nurse who has worked in palliative care, and I wanted to ask her about hospice.

I can’t give a good explanation for my fear and secrecy. Hospice was the logical next step for my mom: Her cancer was inoperable and other treatments hadn’t worked. Mom had a clear advanced directive she created long before she had Alzheimer’s symptoms. My father and sisters and I all knew from that directive and from knowing my mom for many years that she would not want us to prolong her life under these conditions. Mom was living with two terminal diseases.

But there I was huddled in a shower stall whispering to my friend in Idaho and feeling very, very guilty. Bringing in hospice felt like a betrayal. I felt, maybe not that I was causing my mom’s death, but like I was rushing it or agreeing with it or saying that it was ok with me.

This, even though I have been pro-hospice ever since I heard of it, which I believe was back in the 1970s when my mom became enamored by the teachings of Elisabeth Kubler-Ross and shared them with everyone who would listen including her children.

I believe quality of life matters. I believe in choices. I know that research shows hospice does not shorten lifespan. But when faced with my mother’s actual decline and actual pain within her actual living breathing self—the choice to make the call felt, well, wrong. Because the loss of my mother felt wrong.

“Oh Laura,” Betsy said, “Hospice will help all of you.”

“Mom can still sometimes walk to breakfast,” I told her, thinking this was evidence that my mom wasn’t sick enough for hospice.

“That’s excellent. Your hospice nurse will help her to enjoy that more. Some people receive care for years. Most people wait too long and they don’t get the full benefit of hospice which is really about quality of life.”

I remembered the slogan on the Islands Hospice brochure: It’s about Living. I think I actually rolled my eyes at that one. All we could think of these days was illness and death. It seemed a stretch.

Betsy also assured me the staff would tell me if it was too early, in which case there were likely palliative care options available.

I talked with my dad and sisters after that call, and then I made another to Islands Hospice on Maui.

What receiving hospice care meant for my mom was that for the next four months her pain was managed at a level that allowed her to walk to breakfast and play Scrabble and dance in the living room with my father. It meant she never spent another hour of her life in a doctor’s waiting room.

Noelle, our nurse, would visit twice a week and talk with mom out on the lanai of the condo while she checked her blood pressure. Mom quickly befriended Noelle, telling jokes and asking her about her own children.

My dad and I learned the skills necessary to help take care of my mom between Noelle’s visits, and we had a number to call if we had a question or if we needed a nurse to visit at any hour of the day or night.

I don’t want to paint a picture that suggests all of this was easy for any of us and especially for my mom. There were still many moments of uncertainty and worry. There were times when we couldn’t help my mom nearly is as much as we wanted to. There was still unimaginable loss ahead. But the move to hospice care meant less chaos and more guidance and support for our family. For my mom, it meant less pain and more human connection. More regular life.

Betsy was right. Hospice helped all of us. And yes, the pamphlet slogan was right too.

This week I made another call to hospice. This time to enroll in training to be a volunteer. As I’ve begun to explore end-of-life issues, it feels important to be with more people who have firsthand experience. Death and dying can seem abstract when we talk or write or think about them. But they are not abstract. Any more than labor and childbirth are abstract. I don’t want to forget how hard it is, or how full of life.

I look forward to sharing more of what I learn through hospice training and volunteer work. You can also find excellent information at the National Hospice and Care Organization including answers to frequently asked questions, research findings, and a historical timeline for hospice in the United States.

And if you have other topics related to end-of-life that you would like to suggest, please email laura@laurastavoe.com or leave comments below. (If you don’t see a comment box, click here: laurastavoe.com).

I will be traveling next week, and so I will be posting a collection resources I am excited to share on February 21. I will return with a regular column on February 28.

I truly appreciate everyone who reads Tending to Endings and all who have subscribed (72 of us now!). If you would like to receive the post each Friday, please leave your name and email below. My hope is to help create community and conversation around end-of-life matters so that we are better able to support one another.

Have a beautiful week,

Laura

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Tending to Endings (four)

I am no expert on death. I am the new traveler reporting on unexpected discoveries, not the one writing the guidebook. For that, there are people who have worked in this field for decades and who know so much more than I do.

Even so, I feel compelled to share things that made a difference if for no other reason than I could’ve so easily missed them. There is so much we cannot control about death, namely, the loss itself as it barrels on towards us. Sometimes that loss is so big it seems like nothing we do could possibly matter.

In the summer of 2016, I arrived in Portland to visit my friend Susan when there was no longer any chance of her recovering from a brain aneurysm. The family was waiting to remove life support until the following evening when more loved ones would arrive.

I felt privileged to be in that room, but not all that helpful. I mostly wandered from the chair by her bed to the window to the bathroom to the coffee cart and back by Susan’s side. The loss of my friend was already palpable.

Friends began texting me things to tell Susan. I would sit by her and read them. This felt like one small, good thing: reading love aloud and then replying to the sender that I had done so. Days before I had been the one pacing in Boise and my friends Lori and Mary were reading my messages. It mattered.

Not everyone can be in the room. Whether because of distance or timing or because the person needs calm or wants privacy or because most of us collect more friends over a lifetime than can fit around a deathbed.

After the texts I moved on to the messages left on Susan’s Facebook page. A friend dressed in purple wrote “I finally listened to the podcast you sent me about Prince!” Her first-graders held up artwork of birds and messages of love. College friends recounted funny memories. Those of us in the room were reminded of how big Susan’s circle was, how colorful and full her life.

Susan (left) in the Sawtooths with friends Donna and Theresa

Last January, a few weeks after my mom went on hospice care, I was struggling to find ways to bring more relationship into our days. Conversations, even with close friends were stressful for Mom due to the progression of Alzheimer’s. She knew she wasn’t thinking clearly and so she largely avoided social interaction. This was not my mom’s nature, but rather, a symptom of her disease. Mom had a huge circle of close friends, and in her regular state of mind, she would never back away from them.

Mom’s 80th birthday was coming up in August. I talked with my sisters and dad about an idea for an early gift. My mom had often created photo/story books for her grandchildren. Whenever my sons would visit Chicago or Maui or when she would visit Idaho, she would buy a three ring binder and slip photos with a story about their adventures into plastic sleeves.

I asked friends to email a photo of themselves along with one thing they learned from Jane. I included that she was living with Alzheimer’s and cancer and we felt this early gift would be good medicine. I said, short was best as mom could not process a great deal of text, but that her sense of humor was intact. Mostly, I wanted her to see their smiling faces.

It took less than a day for friends to begin sending responses.

Once messages began arriving I saw what a gift this was for all of us. My dad and sisters and I knew my mom’s life was rich, but we had been so focused on the day-to-day. Their words reminded me of my mom’s whole story and helped me to feel connected to her wider community.

Marilyn and Sherm Loken (above); Mom at her every-Tuesday peace vigil (below)

Entries came from former students and fellow peace activists and and grandchildren and bridge group members and college friends and a refugee family my mom had helped resettle. We ended up needing a second binder.

Mom’s response was more than I could’ve hoped. She pored over the photos of friends. She asked me to read entries to her over and over. She smiled.

Eventually she laughed, and said, “These are so nice. If I keep reading them I’ll get a big head.” She began referring to them as her big head books. She wanted me to tell all of her friends that they each deserved a book just like it.

This of course is not a new idea. People create videos and quilts and playlists and piles of greeting cards. But, I am newly aware of how this small thing turned out to be a big thing. Not only for my mom who recognized her life in all those smiling faces. Not only for the family. But for all of us who knew three months later–when Jane Stavoe was no longer on the planet–that we had expressed our love.

In August, Dad asked my nephew Sam to create a digital version and we sent out a link of Mom’s Big Head Book to family and friends on her birthday, the day she would’ve turned 80.

This morning, reminded of all this, I pulled up a YouTube video my friend Susan’s coworker sent to the hospital when Susan first fell ill. Students sit in the grass and tell their favorite things about their teacher: she is creative and kind and funny. She teaches them about birds. She teaches songs. And then they sing “Alligator Pie”. Mostly they say they love her and they want her to get better. One first-grader says, “Mrs. Gardner is almost the best teacher I’ve ever had in my whole life,” and I know Susan is laughing.

Not everyone can be in the room. But you can always squeeze in more love.

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