 By Steve Moran
One of the biggest learning moments of being a family caregiver for Gary, my 92-year-old stepfather who has dementia, is the relentlessness of the experience. It’s not physically hard and not even all that time-consuming, particularly since he’s on hospice, which gives us access to a twice-weekly bath aide, two nursing visits a week, care supplies and medications delivered to our door, and so many other kinds of support.
Teaching Moment: If you have a loved one you’re caring for who will qualify for hospice, do it as early in the process as you can. The worst thing that can happen is they’ll discharge your loved one, but that doesn’t mean they can’t come back.
What Gets Us Down
It’s the non-obvious stuff that gets us down:
Morning Russian Roulette: When we get up in the morning, will we find him alive or passed away? If alive, how will he be? Weak or strong? Mentally alert or fuzzy (on a relative basis), wet or dry?
The Daily Unpredictability: How will he behave today? Sleep all day, be awake all day? Just how many episodes of “Tales of Wells Fargo” can he watch? What else can we do to give him a good day?
The Constant Micro-Decisions: Do we wake him up for meals or let him sleep? How do I get him to wear his briefs to control his minor incontinence? I have to check the skin on his bottom, treat it, and put a dressing on.
The Prison of Responsibility: Is it safe to leave him home while we both go to church for a couple of hours? Can we sneak away for a quick meal and leave him home alone? We have tickets to a concert — who can come stay with him for a few hours?
The Social Pressure: Friends who call wanting to know how he’s doing. Friends who have advice because, well, they read something on the internet. My personal, irrational guilt inducer.
The Dark Knowledge: Knowing that at some point, the end won’t be pretty. The dream, of course, is that he will fall asleep and not wake up. Sometimes that happens. But it’s more likely he will take a fall that will cause his death or cause a rapid decline that will lead to death.
When Expert Advice Meets Messy Reality
I have some great friends who are world-class dementia experts and are available to me pretty much 24/7 with a phone call. They have been super helpful in navigating the process. But even though they are experts, they get to go home at night to their spouse, their family, their life away from and not directly responsible for another older human being who is declining, whose cognition is often off the charts in unexplainable, unpredictable ways.
I have seen so many experts — real experts — post their definitive pronouncements about how to do dementia care right and found myself thinking, “Easy for you to say.” Because in real life, living it out 24/7 in a family setting, it’s not that simple and not that easy.
The Reality Check Nobody Talks About
When you come to my house, put on rubber gloves, and stick your hands into the pee and poop of someone who was once very different, then you are welcome to explain how I’m doing it wrong.
This is the brutal truth about caregiving that the how-to articles and expert advice columns don’t capture. The relentlessness isn’t about the tasks — it’s about the mental load that never stops, the decisions that compound hourly, and the weight of being solely responsible for another human being’s dignity and comfort in their final chapter.
Steve, Thank you for your honest and accurate account. You are a good person doing the most noble and loving act. Hang in there.
Steve – I thought this was a really good article.
Especially – “This is the brutal truth about caregiving that the how-to articles and expert advice columns don’t capture. The relentlessness isn’t about the tasks — it’s about the mental load that never stops, the decisions that compound hourly, and the weight of being solely responsible for another human being’s dignity and comfort in their final chapter”.
It’s the “walk a mile in my shoes” that most people need to do to understand what exactly a caregiver goes through.
Appreciate you posting this!