When You’re Needed as a Caregiver, Will you be Ready?

When my mom first needed the aid and support of a caregiver, I wasn’t ready to assume that role. But someone had to jump in and help. Click here to read my essay Polar Bears, the story of  a reluctant caregiver, published in the latest issue of Cleaver Magazine. Happy winter reading!

Between the Pond and the Woods

Words that Can Soothe or Scare: Hospice

I cringe when I hear certain words. Hospice is one of those terms I’ve tried to ignore throughout my mother’s illness. No matter what a person really means when they say it, all I hear is: “The End.”

Between the Pond and the Woods

A few years ago, a writer told me she had been doing research on hospice programs and she thought I should look into them for my mom. She’d never met my mom and, from my perspective, her comment seemed awfully premature — even downright thoughtless. At that point, my mom still had a lot of life left in her and I was determined to avoid thinking about “The End.” A few years later, I did my own research and realized that hospice isn’t always a morbid concept.

The Merriam Webster’s Dictionary offers this explanation from their Concise Encyclopedia: “Hospices provide a sympathetic environment in which prevention (not just control) of physical pain has top priority, along with patients’ emotional and spiritual needs.” That actually sounds like a good thing. I mean, we’re all struggling to meet our loved ones emotional and spiritual needs and minimize their pain, right?

The problem with the notion of hospice is that you have to be willing to admit that there will be an “end” before you can open yourself to whatever hospice offers. Like most people who’ve cared for someone with dementia, I have used hope and persistence to prop myself up for a long time. A hospice evaluation forces you to redefine your ideas about the future and that’s so hard to do. According to the National Hospice and Palliative Care Organization (NHPCO),  “A patient is eligible for hospice care if a physician determines that the patient has six months or less to live if the terminal illness runs its normal course.”

Dementia is such a weird disease, it’s hard to know what will happen in the next six weeks, much less six months. But there is a list of symptoms that are considered valid indicators that it’s time to consider hospice. For my Mom’s type of dementia, they are:

  • The person is unable to walk, bathe, and dress independently.
  • The person speaks few intelligible words.
  • The person is incontinent of bowel and bladder.
  • The person is steadily losing weight.
  • One or more of the following has occurred in the past year: 1)Aspiration pneumonia; 2) Kidney/urinary tract infection; 3)Recurring fever after antibiotics; 4) Pressure ulcers (bed sores)

The symptoms vary somewhat for each type of dementia, so you should do your own research according to the diagnosis. Despite any fear the word may conjure up, the hospice people I’ve spoken with seem to be extraordinarily caring. It’s their job to help minimize pain, and they try to do that for caregivers as well as patients.