Hospice

Both are 5 Letter Words

angerWith his voice as cold as black ice on a winter road, the nephew kept repeating, “That type of thing should never happen. It wasn’t fair to my aunt.”

I agreed with him.

Every time.

The nephew’s aunt—who’d raised him since his single-parent mother had died before he entered kindergarten—was the most important person in his life. Her final days in hospice, as far as he was concerned, became her worst days.

Based on the brief chart notes I’d scanned about this sixty-something woman, I hadn’t expected any anger about hospice. When I phoned not long after her death to ask how he and the rest of the family were doing, his anger shadowed our entire conversation.

Here, though, I must pause.

[Disclaimer]

There was no nephew. I am making most of this up, based on my thousands of calls to people grieving in the first days after the death of a loved one. And there was no aunt. The “type of thing” that “should never happen” could include many different possibilities:

  • A social worker made a promise to bring a list of local companies for caregiving options, but never followed through.
  • A home health aide didn’t properly dry off the patient after a bath.
  • A hospice physician had scheduled a visit with the family in the morning, but didn’t arrive until late afternoon.
  • A chaplain said a prayer that was explicitly Christian, but the patient was Buddhist.

I could keep adding to this list of disappointments. All of them are possible, but none of what I mentioned happened to this fictional family with a “nephew” desperately hoping his beloved “aunt” would have a calm, easy, gentle death. Read More →

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Unhappy Anniversary

black balloons

“When a year later arrived, I didn’t like the date of Mom’s death being called an anniversary.”

I don’t recall if that statement was read in a book or was part of a conversation. But the sentence has stuck with me, bothered me, and I still haven’t done much to change one of my phone habits.

Included in my responsibilities at the hospice where I work is calling the bereaved. Based on our company’s guidelines, we try to schedule calls several weeks and several months after the family member or friend has died. With some exceptions, the final scheduled phone contact is near the one year “anniversary” of the death date.

I’m glad we do. Even a brief or awkward conversation lets a griever know they are not forgotten. In many of those calls, no one will answer. These days, people are more likely to let a phone ring and find out later who left—or didn’t leave—a message. There are always disconnected numbers or ones that block “unknown” callers. However, quite a few people do respond. They are at work or home or traveling and suddenly there is this voice on the other end asking them, almost a year later, how they are doing. Read More →

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Hospice and the Unknown

UnknownOn the weekly list of hospice patients and their myriad illnesses, one disease seemed to glare back at me: Idiopathic pulmonary fibrosis.

What was it? I’d never heard or read about this illness.

Later, I found this description from the Cleveland Clinic’s website:

In IPF, lung tissue becomes scarred and changes the lung’s ability to function normally. The scarring typically starts at the edges of the lungs and advances towards the center of the lungs. Typically, mild scarring occurs first, but over months to years, the normal lung tissue is replaced by more heavily scarred lung tissue, which makes it difficult to breathe and deliver needed oxygen to the body. Unfortunately, IPF is a disabling disease without a known cure and with few treatment options. The cause of IPF is unknown . . . [Italics added by me.]

After reading, I took a deep breath.

Lungs!

Air!

Life! Read More →

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