Is It Possible to Be Too Accommodating? Living (and Laughing) with Parkinson’s Caregiving
At what point do you stop helping your partner shower at midnight just to calm them down?
That frustration, shouted into a pillow in a parked car somewhere in America, captures the everyday reality and heartbreak of caregiving for a loved one with Parkinson’s disease. It's a situation that often knows no boundaries. There are cleanups at 3 a.m., the solitary sobs in the shower, even an expensive new bed in the hopes of making things even slightly easier.
Welcome to the Middle of the Night
The question about being “too accommodating” was started by a Smart Patients member last month, and it quickly garnered interest. “My partner wants to go to bed at 4 PM. If I say I’m not ready, he gets agitated until I give in,” one caregiver wrote. “So I lie in bed watching movies on my tablet until he wakes at midnight convinced it’s morning—and I help him shower just to calm him down.”
Others wondered if it was “too accommodating” to help your spouse find his sock when it’s in his other hand. Whether you should miss your migraine meds because he needs lunch right now. Whether you should silently clean up the “groundwater” from the bathroom floor again. (Spoiler: it’s not groundwater.)
What they discussed reminded us that so much of Parkinson’s caregiving exists in this strange middle ground between doing too much and not enough, in the balance between resentment and radical compassion. “My heart wraps around him to protect him, to make a safer world for him—and is it enough? Is it too much?” one caregiver asked. “This vigilance erodes me and my sense of self, too.”
Caregiving as an Olympic Sport
Providing care for someone with Parkinson’s disease—especially as dementia symptoms emerge—requires a level of flexibility and fortitude that few outsiders truly understand. In fact, if caregiving were a sport, it would be the decathlon. “We do things that are impossible and we do them anyway,” one member of the Smart Patients caregiver community wrote. “Last night, my husband proclaimed he could no longer walk on the bathroom tile. He was ‘not allowed.’ Now I have to find out who that authority is so I can renegotiate.”
How Much Is Too Much?
That is the question. Or rather, one of the questions.
Others included:
If he can walk to the table, do I still serve him dinner in his recliner because it’s easier?
Do I demand he listen when I vent - or accept that his brain can’t track the plot of a TV show, much less my emotional state?
Questions like these don’t have clear answers. Parkinson’s is unpredictable. One day, your partner walks better when friends visit. The next day may bring hallucinations. “Every day is a movement toward or away from a wobbly center line,” someone explained. “Constipation, a hangnail, a weather change—any small thing can tilt the balance.”
Fortunately, we’ve found that when people in the same situation start talking, strategies and collective wisdom emerge.
“I miss the man I married,” one woman said. “But in the middle of it all, he sometimes shines. He still has those moments. And I want to help him hold on to them.”
Tips from the Trenches
What really opened up the conversation was a shared feeling among caregivers—that while people mean well when they say “you have to take care of yourself first,” it often feels out of touch. It sounds nice; but in the middle of everything, it’s not always helpful. It does not offer suggestions for how to do this. As one spouse said, “Let me just have a shower without having to turn on the TV or let the cat out.” Or: “Let me read a book without being interrupted five times in the first paragraph.” It’s chaos. So our members asked, what strategies have you learned?
Here’s what we heard:
Adjust the environment: A futon instead of a high mattress. Recliner chairs that double as beds. Low lighting all night in the bedroom or bathroom to reduce disorientation.Floor mats with motion alarms to let you know your loved one is on the move. Eye masks with Bluetooth that play vibrational frequencies for sleeping.
Call in backup: Some counties offer free respite hours, in-home therapy, or elder care visits. The VA offers a caregiver stipend for eligible veterans and their spouses.
Schedule joy like a medical appointment: Coffee with friends, painting in the dining room, watching baseball, strawberry picking, or any small break. “Whatever brings peace, DO IT,” a spouse advised. “It’s vital medicine.”
Get creative with connection: Personal trainers, support groups, voice therapy, even gym buddies have helped some patients regain a bit of independence, which also gives their partners a breather.
And most of all, let go of guilt. “There is no place for guilt. None,” one woman wrote. “I say to myself, ‘This is no big deal. Just do what he wants. It’s no big deal.’ That’s how I find peace.”
One Last Bit of Advice
Parkinson’s caregivers carry a heavy load. What keeps them going, more than anything, is love—not just for the person they care for, but also for the life they once shared, and the parts of themselves and their relationship that still matter. Parkinson’s changes everything: routines shift, roles reverse, and the partner you leaned on may now lean on you.
In the middle of all that, it’s easy to lose track of who you are. That’s why some caregivers keep a simple list—on a phone or tucked into a notebook—of the things they love and miss. Not to dwell in the past, but to hold on to themselves. A walk, a song, a quiet moment. One day, that list might be the gentle reminder that even in the thick of it, you’re still in there.
And don’t forget to join a support community like Smart Patients to remind you that you’re not alone, even when it feels like it. These communities are here to empathize when you want to scream into the pillow, encourage you to write down your story, and provide other support.
We’re proud to partner with the American Parkinson Disease Association and the Family Caregiver Alliance to expand their trusted resources for Parkinson’s caregivers by offering the ongoing support and connection of the Smart Patients online community.