After recent health set-backs and a borderline hospice evaluation, my mom has had a slight rebound. She is on course to celebrate her 75th birthday next week. Somehow Mom found the energy to outlive her original diagnosis and make a winter comeback. We’re now buying candles and silly hats for a party.
Birthdays are strange when you’re caring for someone with advancing illness. They may be more complex when the illness is dementia, since our loved ones lose ground so gradually. But I’m sure these celebrations are hard for families caring for someone with cancer or another excruciating disease. You hate seeing a person suffer so much; their quality of life declines in a million tiny ways. Yet, watching them find the strength and dignity to live through terrible problems brings some weird sense of achievement.
I get the opposite reaction from another person I know. He keeps saying he’d like his life to end when he’s 70 years old — he’s perfectly healthy, by the way. But he doesn’t like watching his mom and dad go to the doctor all the time to manage chronic illnesses. He hates that fact that they don’t seem as happy as they once did. I can’t share this attitude. I get so much pleasure from small things in life. I love morning coffee and the sight of deer on my lawn. I’m delighted by the sounds of children playing in the snow and the shifting December light that makes everything seem mysterious.
I don’t know when the aches and pains of aging begin to trump small daily pleasures. It probably depends a lot on how you manage your health as you approach the golden years. But even with great care, your destiny is subject to many random influences. My mom took a walk every day and ate very nutritious food. She didn’t smoke or drink and never had diabetes. Then one day the doorbell rang and dementia arrived! The devastating news was very unexpected.
None of us get to choose the circumstances of our arrival or departure from life. You just need to pack your toolbox and be prepared to work with whatever fate brings. In the past three weeks I’ve gone from morbid speculation to buying confetti and birthday candles. I just keep looking for the silver lining. Here’s hoping you find silver linings among your holiday gifts!
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.”
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.