My Mother Was Dying… So Why Was She Still Being Kept Alive?

The One Question That Finally Ended My Mother’s Suffering

Hospice is supposed to be about comfort, dignity, and letting go.

So why was my mother, bedbound, suffering, and diagnosed with a terminal illness, being kept alive for over two years?

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After Dad retired, my parents moved to the country and settled into a custom-built home on fifteen acres, where they lived for over ten years. They enjoyed a peaceful life, growing their own food and traveling occasionally. It was a simple fulfilling life, until Mom began having seizures.

Suddenly, the land, the mowing, the gardening, and now helping my mom with meals and housework, became too much for my father to manage alone. To make things easier, they moved into a small house in the city, closer to my sister, who was retired and available to help when needed.

Shortly after the move, Mom was diagnosed with Lewy Body Dementia, a disease that attacks both the brain and the body. Over time, her condition slowly worsened. Even the smaller home became too much for Dad to handle, and they eventually made the difficult decision to move into a senior living community.

At first, it was a blessing. Meals were provided, housekeeping was taken care of, and there were activities and people to socialize with, but Mom’s health continued to decline. Eventually, Dad could no longer care for her in their apartment.

Fortunately, there was an assisted living facility just one block away. We moved Mom there so she could receive the care she needed, while still being close enough for Dad to visit every day. By then, she was no longer walking and relied fully on being pushed around in a wheelchair, though most days she remained in bed.

The facility itself was nice, and the staff was kind and attentive, but Mom developed pressure sores on her heels and tailbone from lack of movement. As a result, she had to undergo wound care three times a week to remove damaged tissue, a process that was very painful. She would cry out during treatments and eventually began to fear the nurse visits.

One day, while visiting, Dad and I passed a social worker in the hallway. I stopped her and asked, “How do we know when hospice is appropriate?” She brought us into a private room and told us she was glad we asked, as they typically wait for families to bring up the topic of hospice.

Mom was quickly evaluated and qualified for hospice services. Within days, everything changed. She received a fully automatic hospital bed, oxygen, a specialized wheelchair with elevating leg rests, and additional support focused on comfort.

Dad felt a sense of relief. No more doctor appointments, no more emergency room visits. The focus had shifted to keeping her comfortable. We were told that, typically, hospice patients were expected to live for six to twelve months.

But two years later, Mom was still alive.

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As a home health occupational therapist, I knew several nurses experienced in hospice care. I reached out to one and explained the situation: “My mom has been in hospice for over two years. She has bedsores on her feet and bottom and is suffering through the treatments. She is still on seizure and blood pressure medications. Is that appropriate for hospice? Shouldn’t they just be providing her comfort, not cure?”

The nurse asked me to get a list of my mom’s medications. When I did, her response was immediate, “She should be on medications to keep her comfortable, but many of these medications are keeping her alive.”

At $7,000 a month for her care, it raised a difficult question: Was her care truly about comfort, or something else? My mother had no quality of life. She was suffering through painful wound care. And yet, she continued receiving medications and treatments that were keeping her alive instead of simply keeping her comfortable.

We requested a family meeting with the hospice physician, nurses, caregivers, and our entire family. After listening to their reports, I asked one simple question: “If she is in hospice, why is she still receiving multiple life-sustaining medications?”

The doctor’s response was shocking: “If you want to take her off those medications, you can take her home and do it yourself.”

That was the moment we knew something had to change. We discharged the facility’s in-house hospice and brought in an outside provider, whose compassionate care for my mother and support for our family we will always be grateful for. The medications that had been prolonging her life instead of easing her suffering were stopped immediately.

Six months later, nearly twelve years after her first seizure, my mother passed away, with hospice by her side, finally free from the painful wound care she had endured and from the long, heartbreaking decline of her mind and body. In the midst of our grief, there was also a deep sense of relief for my dad and our family, knowing she was finally at peace.

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These are key lessons I want every family facing hospice care to understand:

• Ask to review medications regularly, as not all medications are appropriate in hospice, and some may do more than provide comfort.

• Clarify the goal of care by asking whether the focus is truly comfort or whether treatment is still aimed at prolonging life.

• Don’t be afraid to question providers, as you have the right to understand every decision being made and to speak up if something doesn’t feel right.

• Know that you can change hospice providers, as we did, which made all the difference for my mother’s comfort.

• Advocate, even when it’s uncomfortable, because your loved one is depending on you to ensure their dignity and quality of life.

• Not all hospice care is like this, as many incredible providers focus on comfort, dignity, and peace. But this experience taught me something important: you cannot assume; you must ask questions, review care, and advocate for your loved one every step of the way.

This is why getting your affairs and your wishes in order matters. Because when the time comes, someone you trust to make medical decisions on your behalf needs to know not just how to care for you, but how you want to be cared for.

For more guidance on preparing for care and advocating for your loved ones, visit The Heart Behind the Care

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LEWY BODY DEMENTIA, also known as LBD, is the second most common type of dementia after Alzheimer’s disease. Protein deposits called Lewy bodies develop in nerve cells in the brain. The protein deposits affect brain regions involved in thinking, memory, and movement, and cause a gradual decline in mental abilities.

People with Lewy body dementia commonly have symptoms of Parkinson’s disease: rigid muscles, slow movement, trouble walking, and tremors. Other symptoms can include: hallucinations, movement symptoms, poor regulation of body functions, cognitive changes, trouble with sleep, varying attention, depression, or apathy.

LBD is progressive. As symptoms get worse, the disease can lead to: worsening dementia, aggressive behavior, depression, increased risk of falling and injury, and worsening of movement symptoms.

Death occurs, on average, about 7 to 8 years after symptoms start.

https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/symptoms-causes/syc-20352025

HOSPICE is medical care for people expected to live for six months or less. Hospice care is not focused on curative therapies or medical treatments designed to prolong life. Still, it focuses on providing comfort at the end of life and supporting the dying person and their family caregivers.

Most hospices follow Medicare requirements and provide medical equipment and medication for symptom control. It does not provide treatment or prescription drugs intended to cure a terminal illness, or any other illness unrelated to the terminal diagnosis, unless the other illness is adding to the patient’s symptom burden.

https://hospicefoundation.org/what-is-hospice/

Helpful Resources:

• Lewy Body Dementia Association, for information, caregiving tips, and support groups

• National Hospice and Palliative Care Organization, for guidance on hospice care, questions to ask, and finding providers

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Disclaimer: This newsletter is for educational purposes only and is not legal, financial, medical, or professional advice. Every situation is unique. Please consult a qualified professional before making decisions. The author assumes no liability for actions taken based on this content.