Family & Friends

How I Learned Not to Fear Hospice

In 2005, my mother, who was suffering from non-Hodgins lymphoma and various other ailments, moved in with my 11-year-old son Paul and me. Mom was still ambulatory, but osteoporosis, arthritis, and phlebitis were making movement increasingly difficult. During the first year of this arrangement she acquired vascular dementia brought on by a series of mini-strokes.

Paul and I spent several months caring for her at our home but we were woefully unprepared for the task. When her falls became more frequent and she clearly needed full time attention, I reluctantly agreed to let her be taken to a hospital. Five days later she was in a nursing home, and four months after that she was in an assisted living facility.

After three difficult years of such care, my cousin Starr asked me if I had considered hospice. My response was to assure her that although Mom was in deep dementia and completely dependent upon physical assistance for even the simplest of tasks, there was no indication that her passing was imminent. My immediate association with the word “hospice” was a one-dimensional scenario of hopelessness personified.

Nevertheless, Starr urged me to look into hospice. I finally took her advice, and thus began a profound learning experience.

How it Worked for Me

A hospice evaluation soon confirmed that Mom indeed qualified—and that her insurance would cover the services. This was an amazing revelation. From that day forward a hospice caregiver would come by three times a week and make sure Mom was properly bathed and generally being treated well. A registered nurse visited at least once a week to monitor any medications and health concerns, keeping me fully informed along the way. If there was a specific concern, the nurse visited more frequently. A chaplain and social worker each made regular visits as well.

Having hospice involved was a huge benefit toward ensuring that Mom was comfortable and safe, which in turn eased my own stress. This became even more important a couple of years later when my fiancée Janice had emergency brain surgery to remove a malignant brain tumor. Unable to visit with my usual frequency, hospice became my lifeline to Mom during those weeks. When it became apparent that Janice was not going to win her battle, hospice again stepped to the front.

What Hospice Taught Me

After two months in the hospital we were able to bring Janice home. Hospice provided all of the necessary equipment and supplies for us to properly care for her needs. The caregiver showed me how to bathe Janice and change her clothing and sheets with the least amount of discomfort. The RN made sure I understood how to use the feeding tube and how to gage her need for medication. I spent many hours a day alone with Janice, but I never felt alone. There was a team involved.

How Hospice Changes Lives

I have accrued years of experience in dealing with healthcare professionals and caregivers, from the top hospitals to the bare-boned assisted living facilities and nursing homes. Some were exceptionally dedicated and skilled, and most were genuinely compassionate and competent. But some were less than competent. Hospice workers are different. I’ve never encountered a hospice worker who was anything less than fully and passionately engaged with the difficult task at hand.

Where I once associated hospice with death, I now regard hospice as representing the essence of life itself. Because of hospice Janice and I were able to experience life to the fullest in her final weeks, and I was able to share in her journey as much as humanly possible.

As a society we ascribe deep significance to the beginning of life; for many, birth is the moment where the physical is most connected with the spiritual. Hospice provides an opportunity to embrace the end of life just as profoundly and lovingly.

Easing the transition of a loved one and sharing the moment of passing are among the finest gifts we can hope to give and receive in this life. I consistently seek new ways to express my gratitude to hospice for my gaining this awareness.

Phil Rice

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    • Dianne Morris

      When my mother was dying some years ago, hospice care was set up at home. Caregivers regularly came to the house and we were able to stay with her, taking turns sitting with her. I’m sure that’s not always a possibility because there are so many factors involved, but it was a good solution for us.

  • Joy

    I am sorry for your loss but I know your mother was grateful for the caregiving you provided to her. I have experience with hospice as well. I was the primary caregiver for my father, my husband and to a lesser degree a few others. While the hospice philosophy is across the board, the practices of the specific agency are not necessarily so. There is often a difference.

    The thing is, each person’s situation and journey in dying is different and so experiences we, as caregivers, have also varies. For many, a visit a few times a week from an RN to an aide for bathing is often not sufficient. I personally found the timing of such visits to be on the intrusive side and on their schedule, certainly not mine. Each visit was a different time and day, no regularity at all.

    I was basically on my own with my husband who was angry and extremely difficult. None of the hospice personnel seemed to have much in the way of experience with angry patients. He never accepted that he was dying and could not accept confinement at all and was combative as a result. It wasn’t until a close friend of mine came to help that I got any rest or was able to do anything like cook for myself or shower. Even though hospice workers witnessed my husband’s combativeness, they had no suggestions or comfort to offer. And again, I was on my own. And very exhausted.

    I was shipped drugs which I already had, so no coordination for that either. I felt as if there was a boilerplate involved with no considerations for the differences in patients, patients’ diseases or really much of anything. With my father, he had accepted his impending death, stayed put and was an easier patient to provide care for. So my experience with hospice then was much more positive. But I think it because he fit some “model” and that was the crux of it all.

    So, my takeaway is that just like many things in life, our mileage does vary.

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