Where Would Mom Be When She Died?

My mother died September 30th, two weeks after being diagnosed with terminal cancer. This was almost seven months from her first medical emergency in the spring, when on March 10th, dad rushed mom to the hospital. When they arrived, she was unresponsive. The medical folks revived her. The note I jotted down simply said: “pneumonia?”

That night was the beginning of many months during which mom faced a cascading waterfall of medical issues and curveballs, from surgeries delayed (low blood count) to surgeries accelerated (mom was suddenly a “trauma case”).

I’ve heard stories of older folks dying soon after a fall or pneumonia or some illness that, for a younger person would be unpleasant, but for the elderly, can become deadly. While those stories hovered in the back of my mind after mom’s first ER trip, I held tightly to the knowledge that my mother was a strong and feisty woman, a woman who did not give up easily.

One reader dubbed my mom a “steel bulldog” after reading my first post about my mom’s medical battles (How Many Days Left). That description delighted mom.

Over the summer, as doctors laid one diagnosis on her after another, mom steadfastly proclaimed “I’m not sick.” As she saw it, her heart valve and hip were parts that could be replaced. As long as the doctors did their jobs and she did hers, she’d recover. Kind of like a broken bone: set it, do the rehab, give it a bit of time, and all’s good.

Her original cancer diagnosis in May was dubbed a slow-growing blood cancer and was, we were told, the least of her worries. It got shoved onto a back shelf.

Now, here it was September, and mom was suddenly facing a cancer that was aggressive and deadly.

Throughout the summer mom had endured hours of pain, multiple surgeries, and months in a rehab facility. The tantalizing promise of being discharged home had been dangled in front of her only days earlier. This was a sucker-punch; a cruel fraud, decreed by a cancer that had morphed from relatively benign to a death sentence.

This time, mom was sick.

When we asked how long she had, the doctors told us maybe four to six weeks, but, they added, “it’s all an estimate.”

After our September 17th meeting with the doctors, dad and I returned home, knowing we faced a difficult question: where should mom be discharged?

When I first learned of mom’s cancer, I was resolute about where I thought she should be when she died: home. There was a voice in me that was insistent that this is how it “should” be. It was, I believed, what we needed to do for her. I didn’t question it then; I couldn’t. It felt like an immutable truth.

But once dad and I got home and started to talk with my siblings, and looked honestly at the situation, the reality of trying to care for mom at home seemed daunting. The house—the location and the layout—presented multiple challenges. Mom lacked mobility, was completely bedridden, and suffered pain when moved, requiring a lot of help. It took two people to move her. The pain she experienced meant her pain medication needed to be well-managed.

She needed round-the-clock health care by skilled people.

The hospital told us they’d discharge mom under hospice care. I knew hospice existed and helped people who were dying. In my mind, these were the skilled people who would help us care for mom at home.

While I was familiar with the idea of hospice, my practical understanding of what services they actually provide was fuzzy and vague. I called. They explained their role as supporting agents; they help the patient and family navigate the unfamiliar end-of-life world in which families find themselves. As supporting agents, they provide nursing and aid resources a few hours a week.  They bring in needed medical equipment. They help coordinate care and pain protocols with other medical professionals. They can be called for help and in emergencies.

Hospice was not, however, a provider of round-the-clock care. That was our responsibility. If we wanted mom to be at home, we either needed to provide her care ourselves as a family, or we needed to bring in outside help.

My siblings and I are scattered around the states and have job responsibilities. My father, at 94, couldn’t physically move mom nor provide the level of care she needed. The rural area in which my parents live has limited home health care resources; agencies couldn’t guarantee they would always have staff when we needed them. And if mom survived into the winter months—unlikely but a possibility—access to care would be even more unpredictable.

Bringing mom home had been my original focus. I had only her in mind. But as we explored and talked—and faced the realities and challenges of home care—we started to think about dad’s well-being as something that also needed to be considered. The reality was, trying to care for mom at home—given her needs and limited staff options—would create a lot of uncertainty and would put an incredible strain on dad.

How do you balance the needs of both the dying and the living? And stay settled through it all?

The reality was, our family’s situation didn’t provide the conditions needed for mom to be cared for at home.

It wasn’t an easy conclusion to come to. I had to let go of a belief that dying at home was the only way; the “right” way. I had to accept that we, as a family, were finding what could work, given all the factors influencing the decision.

After accepting home care wasn’t feasible, we looked at our other options: a hospice “home” two hours from dad, or the rehab facility 10-minutes away, where mom had spent the summer. We considered the hospice home; it was highly recommended by hospital staff and looked attractive in the photos, but the distance was an issue. Were there any similar facilities closer by? No.

As we narrowed things down we realized the best place to discharge mom was back to the rehab facility 10-minutes from dad. It was familiar to mom, and to us. It was located where family and friends could easily visit and spend brief or extended times with her. It was staffed by caregivers who knew mom and who mom knew. She would receive the level of personal care she needed, including pain management, under the oversight of her local doctor and hospice. Our family all agreed on this choice.

It was the right choice. Proximity was a fundamental key to why it was right, but equally important was the fact that it was familiar. Mom was comforted when recognizable faces appeared in her room. The staff greeted mom not as a stranger coming to die, but as the fighter they had seen successfully face multiple surgeries that summer. They were devastated by her diagnosis; their fondness and respect for mom was reflected in their care.

Our ultimate discharge-location decision reads like a straightforward, methodical, orderly process that started Monday night—when dad and I got home from the hospital on the 17th—and ended with mom’s discharge Friday morning, the 21st.

It was anything but that.

When a loved one is dying and you don’t know how long they have—but you know the runway is short—time gets lost, swept up into a cloud; into a shape that changes and morphs.  Decisions are made without the luxury of time. Second-guessing doesn’t feel like an option yet the direction you’re heading must change as new information arrives.

Things get done. Calls to mom and her nurses; Skype sessions with my sister; on-line research; calls to investigate care facilities; hold music; texts to update my daughter; everyday-ordinary and uniquely-atypical interactions with dad; touching base with my brother; another drive over to the hospital to see mom and talk with medical professionals. Was it really only three mornings ago I arrived in Vermont?

Time compressed, stretched out and confused. It would continue like that as life dragged us along the rugged terrain toward mom’s death.

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My Mother’s Last Months. Previous Posts:

• How Many Days Left, 8/28/18
• 32-Days, 10/17/18

Photo source: Walk the Goats

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