Tag Archives: hospice

‘Home is still a hard place to die’



I was interviewed for a series running on Nashville Public Radio called, “The Cost of Dying.” My interview is featured in the segment, “Home is Still a Hard Place to Die.”

I am grateful to Blake Farmer for reporting on the cost and challenges of end-of-life care. It’s a topic that is not discussed enough, until one finds themselves dealing with death in their own family.

Farmer took note of my essay, “Dying at home is not all it’s cracked up to be,” which appeared in my essay collection, The Reluctant Caregiver. That essay sparked a lot of debate on social media, because it revealed that there is another side to the aging-dying at home trend, and it’s not pretty. It’s one that family members often silently suffer through, because they feel guilty if they complain.

As it’s made clear in the Nashville Public Radio report, I am not anti-hospice by any means, and I know there are wonderful people who work in the industry. It is not a job I could imagine doing, and I think it takes a special kind of person to care for the dying and their families on a daily basis. But especially in rural areas, there are simply not enough hospice and home hospice providers available. That means the care falls upon family members, which is what I experienced with my mother. It was one of the most difficult things I’ve ever done, and while I don’t regret caring for my dying mother, I wish I had been better supported.

Farmer’s series places a spotlight on the challenges of dying at home, from interviews with family caregivers to an examination of the growing hospice industry. I encourage you to listen to the series and read the accompanying reports.

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How the dying teach empathy to today’s youths

While some may feel empathy is not something that needs to be taught, but is something that should come naturally to human beings, I do think people need opportunities to experience empathy.

A unique class for high school seniors in New York is doing just that. Simply called “hospice,” the students learn how to take care of the dying and a whole lot more.


I was moved by the students’ experiences, and how they learned to cater to the resident’s needs, both physical and emotional.As anyone knows who has cared for a dying person, it is usually the smallest of actions that mean the most. A student helps a woman who was a speech pathologist but now ironically battles frontal lobe syndrome do a word puzzle. Another student rook time to read a memoir that a resident had written about his life, to get to know him better.

Sometimes the students experience death, up close and personal. It even hits close to home sometimes, as one student enrolled in the class has to deal with her dying grandmother who has been admitted to hospice.

The students shared what they gained from this most unusual of courses. They liked the fact that it was non-competitive, and it was a reality check that we are all going to die someday. Another student liked the class because it wasn’t competitive like most of his other courses; it’s simply about helping other people.

While I say kudos to The Harley School for maintaining such a course, and there may be similar classes elsewhere, I would like to see this become a more widespread movement. We’ve heard about the “scared straight” classes that send troubled teens to the morgue, and while that may shock some into choosing a better path in life, I think being around those who are one step away from death is far more valuable.


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My essay about dying at home posted on The Caregiver Space

I’ve been reading posts on The Caregiver Space for quite some time, but never had time to submit my own writing.

Now that I find myself in a post-caregiving phase of my life, I’m really trying to focus on writing a series of essays that have been stewing in my brain for awhile.

hospital bed

Last week, The Caregiver Space published my essay, “Why dying at home is not all it’s cracked up to be” and the reception has been quite positive. The post was published on The Caregiver Space Facebook page where it generated several hundred likes and many heartfelt comments.

The essay is not an attack on hospice care workers; I admire most of them and think they do a phenomenal job. Hospice care is truly a calling in my opinion, and one can see the benefit of the loving, compassionate care they provide.

My essay is a look at dying at home vs. dying in a facility from the family caregiver’s perspective. After my dad died in a skilled nursing facility, I was all for my mother dying at home. But the reality was a bit different. It was an emotionally brutal experience that I wouldn’t wish on my worst enemy. That’s not to say that her death would have necessarily been better in a hospital, it would have been difficult in a different way.

My main point of the essay is to bring awareness to family caregivers in rural areas. They may find that the local home hospice agency is understaffed and overworked, and cannot provide the around-the-clock care that is often touted by die-at-home advocates. People should be aware and prepare themselves for taking on more of the nursing duties of caregiving. If they feel they cannot do it themselves, they should seek out help from family, friends or professional caregivers.

If you have the time, please read the essay and let me know what you think. Also, please share with anyone who you think could benefit from the information.


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Playing the waiting game with Death

My mother’s health took a big turn for the worse this week.

The hospice nurse expects her to pass in days, maybe a week, though her heart is very strong, so she could last longer.

Mother's Day

Mother’s Day

For her sake, and mine, I hope that the suffering is not prolonged.

She is now totally bedridden, somewhat delirious and a new pain complaint has popped up the last two days. She now complains of severe head and neck pain. The nurse cannot figure out what may be causing it. It is unlikely that the colon cancer, if it has returned, spread to her brain, though it is a possibility.

But the morphine is not really touching the head pain, even when dosed hourly. She is so “zonked out” by the pain meds yet still is pointing to her head and grimacing. That is tough to watch.

Mom’s face has been taken over by that ghoulish death mask. Her eyes are starting to look beyond.

But her heart continues to beat hard and strong in her emaciated chest.

In one of her lucid moments, my mother asked what had happened to her. And to that, I had no good answer.


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Being the ‘angry advocate’ is sometimes necessary

I don’t like conflict. I like things to run smoothly and everyone to do their job. This is especially true during a crisis.

Of course, it is in these tough situations that conflicts and issues often arise.

Ironic door sign

I found out yesterday that after waiting over a week for hospice to begin, with my mom reporting an 8 out of 10 on the pain scale during every home health visit, that the hospice transition process had not even started! The home health agency told me I needed to talk to my mother’s primary care physician. But last week, when I was at the doctor’s office, I asked about starting hospice and the doctor’s staff told me the home health agency needed to fax them paperwork.

I was beyond frustrated. I don’t get angry very often but I was really furious. My mom had suffered needlessly for over a week because these two entities that work with each other all the time can’t get their acts together?

Since the local home health agency is now part of a larger corporation, I filed a complaint at the corporate level. I don’t generally like to throw people under the bus but I wanted action.

And it worked. Tomorrow a staff member is coming to transition Mom to home hospice.

I just wish I had been the angry advocate sooner.


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A family’s choice

Today was a fruitless 10 hour hospital vigil waiting for the doctor to discharge Mom back to the nursing home. The doctor finally showed up at 5 p.m., spent about 3 minutes with Mom and gave the green light for discharge. Of course, by then it was too late in the day, so Mom is stuck in the hospital another night.

The woman sharing Mom’s room is very ill. She’s in renal failure and is refusing more treatment, which included dialysis and amputations of her hand and foot. Her family gathered today for the big decision.

There was tension, tears and bubbly giggles from the woman’s many grandkids. The doctor stressed to the family how the woman was capable of making this decision and how it should be honored.

While earlier it seemed things might get ugly, in the end, the family did the right thing. The woman will start home hospice tomorrow.

The family’s painful day made Mom and I think about Dad and the decisions made for his care.

One has to balance love with mercy in these situations. Often, people confuse the two but today, mercy won.

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Life in a box

I found out today that a former co-worker of mine has died. I had no idea he was ill, as I did not keep up with him after he left the company we worked together at. What I do remember of him was his white shock of hair, a warm smile and an easygoing spirit. Apparently some of his friends were having a life legacy box created for him. An organization has members who are woodworkers donate their time to create beautiful wooden boxes, which can be personalized. They can then be filled with mementos, letters, photos, etc. to honor one’s life. These boxes are delivered to those in hospice. The box is passed on to family members once the person passes. I think it is a beautiful concept.

It made me think about how Alzheimer’s, and I’m sure many other diseases, can overshadow one’s legacy. Years of decline, both physically and mentally, can strip away so much of what makes a person unique. What’s left behind is this shell of a person, who often seems numb and distorted from suffering and the medications designed to ease the suffering. But to allow those final images to dominate our memories allows the disease to win.

I thought about what I would put in a box for Dad. Definitely something green, probably a symbol of a shamrock to represent his birthplace. Maybe some rosary beads since he was Catholic. A picture of my parents when they were dating. A picture of Dad holding me as a baby. I would include a photo of the Titanic, because he loved to study the history of that ship. I’d probably put a cigarette in there, because so many of my memories of Dad include him smoking. (My mom still hasn’t thrown away the last pack of cigarettes that Dad had at home.) Can’t put a pint of beer in a box but maybe a Guinness coaster or ad, since that was one of his favorite brands. Maybe a tiny bottle of Old Brut, the cologne he wore the most. I’d throw in a Bing Crosby CD.

It’s kind of funny how my memories of Dad are a distinct mixture of virtue and vice.

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