Hospice Care: Uncharted Territory

Today's blog contribution is from one of our specialists at Vital Decisions, Kayleen Oliver. Her personal story she shares below brings light to an often taboo topic: Hospice care. Her story highlights that by having open discussions about advance care planning, we can help navigate the care of our loved ones, ensuring that what's important to them is kept front and center.

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He died a week before his 79th birthday.

A Marine Corps Veteran and a fighter against mental illness and addiction, dementia was the final battle my grandfather fought before his passing. He put up a good fight, and lasted a few extra rounds, but in the end we had to let him go.

He struggled for years. At first it was little things; there were moments of forgetfulness and lapses in memory, nothing we couldn’t laugh off and chalk up to old age. As time went on he experienced increased forgetfulness, nighttime agitation, and overall confusion of seemingly simple tasks. The doctors and home health staff continued explaining to my grandmother that her husband was experiencing dementia; there were parts she understood and others she couldn’t begin to grasp. After a number of episodes related to depression and agitation, it was suggested that my grandfather, the decorated veteran, enter into a nursing facility.

“They’ll be able to take care of him” we said. “This way, at least you know he’s cared for. You can’t do it all alone, Mom” her kids pleaded.

 “You know what the doctors said…this is only going to get more challenging, and think about it, you’re older now, you can’t do all of this alone.” These are just a few of the responses to which my grandmother replied, “He’s my husband. I can’t leave him.”

She was determined to care for him. It was sweet; she showed the type of dedication only movies talk about. Through it all, the dementia progressed, he began losing language and became more withdrawn from all of us. Slowly I wondered how much more of this my grandmother, who is all of 100 pounds soaking wet, could handle on her own.

Eventually my grandfather was placed in a local nursing home. There were discussions around finances, necessary care, and overall long term goals, all of which we talk about with our clients, at Vital Decisions, about on a daily basis. In time, he lost the ability to communicate, the ability to swallow and was experiencing pain throughout his body. With these striking developments my family began to enter into uncharted waters…

“Well, what about Hospice, Mom?” My mother, her oldest daughter, asked. She was the first to formally ask the question that I’m sure was on their minds long before. In the week or so that followed, my family participated in many discussions pertaining to my grandfather’s care. Social workers, nurses and chaplains spoke with my grandmother about the meaning of hospice; they shared that entering hospice didn’t mean he was going to die right away. Hospice wasn’t an expiration date; it was meant to provide a bit of hope and peace for a grieving wife and family.

Gradually, it was decided upon that yes, he would want to be kept comfortable; yes, he would want someone to come clean him up, rub his hands and talk to him, and even to play music for him. Initially, I’ll admit I was a skeptic like my grandmother. I found myself thinking, “isn’t this just going to make him die sooner? Who wants that?”

I was there the night my family decided that he would enter into Hospice. The nurse was called in for evaluation and showed up to his room; my family was down meeting with the social worker and I was sitting talking to my grandfather, telling him about my day like so many other days before. The nurse walked in, introduced herself, and shared that she was there to check on him. She asked some questions about how he was feeling, with tired eyes and a quiet voice he replied, “I hurt. I hurt all over.”

I watched as she tended to him, talking to him and explaining, as much as she could, about what he could expect. She wanted to know him, and more importantly, she wanted him to know she was there. She told him. “I’m going to come and visit with you. I can’t wait to hear about this amazing family you have here” she said, pointing at me as I wiped a stray tear from my eye.

Hospice continued for two weeks. We got the call one more time to come visit; his condition had taken a turn that morning after he had a minor seizure, sometimes seen at the end stages, my grandmother wanted us to be there. We walked in surrounded by nurses, some in the corner consoling my grandmother, others sitting with my grandfather, adjusting his medication and talking to him like it was any other day.

Within just a few hours, as John Lennon’s “Imagine” was playing on the hallway radio, my grandfather passed. We took comfort knowing that he passed with little pain, and that he passed before they had to administer morphine, a wish he had made clear from the beginning that he did not want.

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I share this story not for sadness or for melancholia, but to highlight the importance of having conversations with all parties involved and at various stages in their illness. I share this story because before my mom had introduced Hospice it was not something my grandmother had thought about. Advanced care planning was not something they had thought about together, and yet in that moment decisions needed to be made and my grandfather, in some capacity, needed to be considered. What was important to him was brought to the table, and as we reflect back on it together each year, we work together to believe that his death followed suit with the life he led.

When Hospice was first introduced to my grandmother, and even to me, it brought feelings of fear and questions surrounding my grandfather’s care and the progression of his illness. It was new territory for all of us and while we learned more about the process, about the level of comfort and genuine care that could be provided to my grandfather, the decision began to bring peace. While there may be questions around the decision to have a loved one enter Hospice, often times there can also be comfort in that decision. Hospice can be a way of letting your loved one die with dignity, free from pain and suffering, and be tended to in the way they need. For some, hospice can allow people to die as they have lived and for my grandfather, I believe that was the case.

As we do our work at Vital Decisions, helping folks to think about their own future care and wishes, may we continue to come alongside spouses, surrogates and other family members, providing a steady anchor for those ready and willing to begin the journey with us. The goal is to continuing to partner with folks, opening the door and providing a space to have conversation with those who don’t find these topics to be uncharted waters, while also supporting those who may not have discussed advanced care planning before. As families work to provide a safe harbor for one another we can work to offer a safe harbor and reassurance for those navigating the care of their loved ones, ensuring that what’s important is kept front and center.