Tag Archives: hospice and dementia

Hospice Can Help Caregivers

Hospice can help caregivers well before our loved ones reach the end. In many cases hospice organizations can provide supplies and in-home aid that we struggle to obtain on our own. Despite the value of this support there is some stigma around the term hospice. Many #caregivers hesitate to say the word.

Hospice can help caregivers

The past few months have been so difficult at our house. We suffered through the winter snow and ice storms. A member of my weekly support team injured her wrist and couldn’t help us. Another person couldn’t get here because of serious car problems. At the same time, I was struggling to get mom’s tax records together, do my own taxes, and finish the renovation of her old home. All these issues swirled together to create a funnel of chaos in my life. My work suffered. Some times I couldn’t sleep. I felt like I was collapsing into a swamp of pain each night. Sore back, aching shoulders, worried mind.

Somewhere in the midst of this tempest, one of our helpers told me about a hospice group that helped her grandmother. She raised the subject gently and with tact. She said, “I don’t want you to get the wrong idea. I just think they might be able to help. They supported my grandma for nearly two years before she passed.”

As she explained it, the word hospice sounded less like a betrayal. I’ve always felt that I should keep my thoughts about Mom’s mortality to myself. My mother can’t speak. Maybe she does think about death, but I feel it’s unfair for me to share my fears when she can’t voice hers. This might be completely misguided thinking. I just haven’t been sure how to broach the topic in her presence.

Some Benefits of Hospice Care

The hospice group — which is named Compassionate Care — came to our house within hours of my first phone call. They sent a nurse to assess Mom’s health that night. The nurse approved services right away. Within 48 hours, I heard from another nurse, two chaplains, and a social worker. My work schedule was very busy so I felt a bit overwhelmed by the sudden flood of attention. But since they started working with our family, the hospice team has provided tremendous help.

Now UPS delivers basic supplies like chucks, gloves, and wipes to our door. That means I don’t have to drive to CVS or Rite Aid every few days. They’ve assigned an aide to help out at our house four days a week. I also learned that they arrange #respite care for family #caregivers. I never really wanted to discuss my fears about mom’s decline, especially not with strangers. Yet I’ve already engaged in several two-hour conversations that involved a lot of soggy tissues. Seems like there may be more of these talks in my future.

I’m not saying hospice is the right choice for everyone. But I’m sure I would have put this off longer if someone hadn’t suggested it to me. By waiting, I’d still be missing out on valuable help. We had my mom evaluated for hospice once before. At that time, they said she was a borderline case. This time the nurses had no doubts. The only one with doubts was yours truly. By erasing these doubts, I realize that seeing things more clearly is a great blessing.

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.