What I am Learning from My Husband
Every day, I learn something new about my husband, myself, and this growing sub-culture of family caregivers.
In the past 18 months, my husband has had L1–L5 spinal fusion surgery. Along with his Parkinson’s disease, caregiving feels a lot like playing Whack-a-Mole—I never know what challenge will pop up next.
His health—and my managing it—is a roller coaster. Some weeks are steady: no falls, decent sleep, maybe even a few laughs. Then suddenly, he’ll fall twice in one week. Thankfully, no serious injuries, but each fall brings the inevitable setbacks: more pain, more depression, and more frustration for both of us.
Since November 2023, he’s endured a five-level lumbar surgery. Soon after, he fell and needed 27 staples in his scalp. Not long after that, he broke his hip and ankle, both requiring surgery. Another fall this year meant another repair to that same hip bone. He’s been on home health twice.
His dementia adds another layer. His short-term memory is unreliable, so he asks the same questions day after day—“When’s my next appointment?”—even if I’m in the middle of cooking dinner or working at my part-time job from home.
When he’s in pain or feeling low, he mumbles. The worse the pain, the more he mumbles. He’s had excellent speech therapy, but when depression hits, he resists doing the exercises—like reading out loud. Often, he doesn’t put in his hearing aids, which makes conversation even harder and turns communication into a guessing game. I lose patience more over communication than anything else.
Through it all, this is a good man. We’re celebrating our 30th anniversary this year, and there are still moments of joy—memories we share, jokes that land just right, or quiet evenings when he’s comfortable and at peace. Those moments keep me grounded.
DIY Health Care
DIY (Do It Yourself) is what I call our current health care system. Increasingly, it’s the patient—or more often, the family caregiver—who has to make the phone calls, navigate the endless phone menus, and chase down the office that never returns messages. One practice did not return phone messages left every Monday for four weeks, requesting a routine test. The office told me to use their portal, but they missed that message, too. We now have three separate medical portals I have to set up, monitor, and manage.
We have outstanding health care providers. Our physicians are overscheduled, and more and more of them are part of a larger practice. I am frankly appalled that our PCP is now in a small storefront between a cafe and a much larger specialist office, across the parking lot from a quick oil change shop.
Grateful
Through it all, I practice being grateful. I have the blessing of a powerful group of women who are always there if I only ask — and often even if I don’t. My sons (daughter-in-law), not by birth but by history and choice, family, and friends who are family.
What I’ve Learned (nowhere near a complete list)
My life-long personal motto: Flexibility and a sense of humor.
Kindness – essential to caregiving
Patience – Not the kind you read about, but the kind you practice moment by moment
Gratitude – for the big things and the small things too.
Tolerance – For him, for myself, and for the messiness of life.
Anxiety – It shows up, but I’ve learned to keep moving anyway.
Low-level depression – Real and ongoing, but manageable.
Grief – The man I know is slowly disappearing, mentally and physically, though there are bursts of his old self. He is still here, and I’m grateful for the time we have.
Bursts of joy – They matter the most.
Laugh – essential to mental and physical health
DIY health – Learn ways to deal with it, keep breathing, keep a pen and pad handy, and accept that it is what it is.
- It is all temporary anyway – intense in the moment, but the next moment will be different.
I can’t fix everything that’s broken, but I can keep trying, keep learning, and keep loving. For anyone walking a similar path—take notes, breathe often, ask for help, and don’t lose yourself completely in the care you give.
Try not to laugh when everyone tells you, “You have to take care of yourself,” or “Self-care is so important.” I agree, and I do have my moments of time for myself, a one-day respite, recently hiring someone to help me a couple of times a week, and time with my dogs. The reality is that self-care usually comes in moments you decide to take advantage of. Try doing nothing, as impossible as it sounds. Use YouTube, relaxation apps, and listen to music. Self-care is a choice we have to make.
Caregiving is exhausting—but for me, still threaded with love and kindness.
By Zanda Hilger, LPC, Founder, Family Caregiver & Program Manager for Family Caregivers Online
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