Choosing Hospice Care for My Husband: Finding Comfort and Support at Home

The Decision to Bring John Home With Hospice Care

It was close to midnight when we made the decision to bring John home with hospice care. He was in a hospital two hours away. We had been on the phone for hours.

(John shared his side of this decision in "I Rang the Bell for Lymphoma. Three Years Later, I Chose Hospice.")

First, I talked with a nurse in his ward at the hospital to ask if there was anything she could do to speed up discharge. I told her we wanted to set up hospice care. She made a note for the doctors and recommended I call my local hospice that night to give them some forewarning that there would be a new referral in the morning.

I looked up the number and called. Even though it was well past business hours, a nurse answered, listened and explained the process on their end. The calm presence of nurses in the night, helping to make this momentous decision seem reasonable, helped make the next step seem doable. Knowing that other people knew what to do when I could barely imagine what needed to be done was reassuring.

Preparing Our Family for Hospice Care

In the morning, I roused our teenage daughter to let her know I was going to bring Daddy home.

I told her that coming home with hospice care meant we weren't going to try to treat the cancer. We were just going to help Daddy feel the best he could for as long as we could. I told her I didn't know how long it would take, but we'd be back later that day. I would text when I got there and keep her posted.

Bringing John Home From the Hospital

The hospital is about two hours from home. John talked me through checking the oil and the tire pressure over the phone before I left town.

Only a handful of our friends and family knew about the diagnosis, and even fewer knew we were choosing hospice care. Only my brother and my closest friends received an anguished text in the night along the lines of, "I don't know how I'm going to do this!"

Melinda called because she knew I was on the road. We talked for a good part of the drive.

Then I was there: parking, finding his room in the neurosciences ward, where he was recovering after a brain biopsy the previous day.

We waited for discharge and talked with multiple doctors and a social worker to make sure we understood the implications of declining treatment and going home with hospice care.

We knew.

John was so low he couldn't imagine starting treatment. He could barely walk to the bathroom. He had headaches and double vision.

What Happened When We Got Home

While we were getting in the car to drive home, I received a call from our local hospice. They would have someone meet us at our home as soon as we arrived to complete the intake paperwork and make sure we had the equipment and medications we would need.

The nurse brought a bag of medications for supportive care—some we would need quickly, others that are still waiting just in case.

The very next morning, a truck arrived to deliver equipment: a hospital bed that would replace the couch in our TV room, a walker, wheelchair, toilet chair and shower stool.

We called to find out what happened to the prescription for steroids the doctors wrote before we left the hospital. We met the social worker and the chaplain and adapted to a pattern of nurses' visits, pills and caregiving.

Finding Relief Through Hospice Care

The steroids made a big difference very quickly. They shrank the swelling around the lesions in John's brain and immediately eliminated most of the worst symptoms.

The headache, dizziness, nausea and double vision disappeared completely for about six weeks. Constipation was counteracted by Senna; restless sleep was subdued with lorazepam.

John rebounded so that he felt he was 90% most days from late June to mid-August.

He had a long to-do list.

(John reflects on this time in his latest blog, "I'm Jealous of the World — and Grateful I Got to Be Part of It.")

How Hospice Helped Us Make the Most of Our Time

Twice a week, hospice nurses come by for a few minutes or an hour. They ask and they listen and they encourage us to do things we want to do.

The hospice philosophy is to work with patients to help them lead their best lives for as long as they can. Our hospice is a nonprofit that cares for patients regardless of their ability to pay for that care.

They bring calm to a crisis, apply knowledge to emerging problems and encourage patients to lead life to the fullest while they can.

The Small Things That Still Bring Joy

One day during a nurse's visit, John confessed he was having a donut a day—a guilty pleasure.

The nurse shared a story about a previous client who asked if he could have a little whiskey each day.

Hospice says yes, if that's what you enjoy. Just don't do it if it makes you feel worse.

John's favorite part of each day now is beer or whiskey with a cigarillo and his favorite music. He tells everyone he can that hospice told him it was OK.

He has had such a long list of things to do, it has often been the only time he really takes a break, slows down and sits quietly.

Hospice nurses are my heroes.

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