5 Things Care Givers Want Hospice Workers to Know

When your loved one is in hospice, this is what care giving looks like

Posted Aug 28, 2016

Photo by Kristin Meekhof
Source: Photo by Kristin Meekhof

In 2007, I was 33, and my husband was diagnosed with a rare cancer — adrenal. Approximately seven weeks after his diagnosis, we made the decision to begin hospice care. In our home, my husband received hospice for about one week, and then he died.

These are five things that I would like health care workers to know about hospice care giving.

1. As a Caregiver, I Was Living on Empty

Despite a graduate degree in clinical social work, I struggled with understanding what the hospice workers told me. Before my husband came home to hospice, I was living in a state of crisis. I thought my husband was healthy. His blood work was normal. Adrenal cancer is often asymptomatic. Now, suddenly, we were told that my husband had maybe seven months to live. I hadn’t slept. I misspelled my name on the initial hospice paperwork, and that home health worker seemed annoyed that I’d not only signed on the wrong line, but there was also a spelling error. And in normal circumstances, I read everything. However, that first day my husband came home from the hospital to enter hospice, I was in shock. I read nothing, and I signed all the paperwork. Big error in judgment, you say. Honestly, I was living on empty.

2. “Just One More Thing” Is the Tipping Point

Let me explain what I mean by this sentence. If you read number one, you know that I was living on empty. The emotional marathon had taken its toll, and I was only 33. I was in good health, and I looked strong. However, I was often sick to my stomach. I wasn’t able to keep food down and had no appetite. I was the primary caregiver for my husband. He knew that he was dying, and so did I. The stress was unlike anything I’ve ever encountered.

And while it appeared that I was able to manage his pain through morphine drops, there was nothing to help ease my emotional pain. And that pain was real. Watching my husband melt away was hell. So, when the health care worker comes into my home and says, “Just do this one more thing — like write down when he was awake or how much he ate,” I lost it. That “one more thing” may appear trivial, but it was the tipping point that sent me into a complete meltdown.

3. Living in a Cloud of Fear

Each day, fear was as fresh as morning sunlight peeking through the clouds. However, the only cloud that appeared over me was fear. I was afraid I would make a mistake with the morphine. I feared that I would hurt him when I would try to roll him on his side to avoid bed sores. I was afraid that he was in more pain than I realized. I was afraid that my husband could sense my fear, and he would think that he was a burden. I was afraid that if I made a serious mistake, hospice would remove my husband from my care and place him outside of our home. That was his worst fear and mine as well.

4. Simple Mental Tasks Are All Consuming

When your primary focus is care giving the once mundane tasks suddenly require an inordinate amount of physical and mental energy. I can remember someone asking me for directions to our home. This was in 2007 when smart phones weren't in everyone's hand. I could not recall the exit number that was closest to us. I struggled as if I was solving some complex algorithm in my head. My memory was gone and of course, I panicked which made it worse.

Think of it like this — you are emotionally and physically tapped out and there is no sign of restoration in the immediate future.No one is coming to your rescue. You have no idea when or how you will get relief, so when you are forced to do something like a cognitive task it provokes anxiety. And not being able to complete it can become the moment the caregiver becomes unhinged. The caregiver's brain is hijacked with fear.

5. Nothing really prepares you for this moment

Although hospice was a choice both my late husband and I agreed upon there was nothing that truly prepared me for the moment that he became unresponsive. Yes, the hospice staff told me this time would surely come, but the day I sat beside my late husband and he no longer squeezed my hand when I talked to him felt like I was in a ring of hell. Until then, although we weren't having conversations, I knew with a squeeze of my hand that we was still very receptive to what I said. Certainly, I was aware that "hearing is one of the last things to go" I was told by a hospice worker — (those were the exact words she used) — but when it occurred, it was like he let go of my hand and was falling away from my reach.

It is my hope that in reading this you may get a little glimpse inside the fragile state that caregivers often live in. While caregivers may be extremely successful in other areas of their life, very little prepares them for the responsibility of caring for their loved one. Few caregivers have done this before. It is an emotional marathon with a painful end.

Kristin Meekhof is a speaker, writer and author of the book, A Widow's Guide to Healing (with cover blurbs from her friend Deepak Chopra, MD and Maria Shriver- Sourcebooks, 2015). Kristin is also a contributor to the Live Happy book (HarperElixir, 2016). She is a  licensed master's level social worker, obtained her B.A. from Kalamazoo College, and completed the M.S.W. program at the University of Michigan. Recently, Kristin was invited to the United Nations to attend the CSW60 conference where she introduced Lord Loomba.  She can be reached via her website.