“There is no such thing as a typical day. Only rhythms we fight to keep.”
When you’re caring for someone with Huntington’s Disease, no two days look the same—but every day is full.
Full of responsibilities. Full of adjustments. Full of emotional weight.
And—if you’re lucky—full of tiny wins that make the hard moments worth it.
People often ask, “How do you do it all?”
The honest answer is: I don’t. Not every day. But I do enough. And I’ve learned what makes our world manageable.
1. Routines Are Everything—But They Must Bend
We live by a loose daily rhythm. It keeps both of us grounded.
Mornings:
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Medications come first. A daily pill organizer is essential. We use a device called Hero that we can set a scheduled dispense time and it automatically dispenses her medicine. Using sounds, lights, and phone notifications. Also it. An handle as needed dispensing. It has been a game changer for us.
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I help her with basic grooming—sometimes just brushing teeth and hair is enough to start the day with dignity.
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Breakfast is easy: something nutritious but not messy, with a calm environment (no TV, minimal distractions).
Afternoons:
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Adult day care has been a godsend. Three days a week, she attends a local center thanks to a grant. It provides stimulation, social interaction, and gives me time to work and breathe.
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If she’s home, I plan light activities: folding towels, watching her favorite show on Hallmark or just sitting on the porch.Our son is a huge blessing in working with her and recognizing signs of disregulation.
Evenings:
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We try to wind down early. Dinner by 6:30, a calm routine, and low lighting help her settle.
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Meals, believe it or not, is her anchor point throughout the day. Its almost how she measures time.
By 7:30 she is preparing for bed clad in her pajamas and waiting for her evening medicine.
But we stay flexible. Some days, routines fall apart. There are nights when she gets up at 2:30 a.m. and starts trying to do house chores (dishes, laundry, etc - which we have ti go back over to finish) or watching TV again, or begins waking everyone up asking questions about the upcomming day or events. Those are rough nights in trying to get her resettled so we can go back to resting. There have been times I have found the refigerator door has been left open all night, or the door to house becyase she likes to sit on the patio.
And that’s okay.
2. Technology Is a Silent Teammate
There are tools that make a real difference:
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Pill Reminders: We use a talking medication reminder app synced with my phone and watch.
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Smart Home Devices: We use Skylight calendar for Calendar Sharing: I use Google Calendar to track her appointments and adult day care schedule, color-coded and synced across my devices. And keep track of meals and grocery items as well as tasks and chores.
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Video Monitoring: Just a small indoor camera in our main areas of the house helps me keep an eye on her if I’m outside for a few minutes or away at work.
I don’t rely on tech to do everything—but it reduces stress and helps me catch things before they become emergencies.
3. You Must Build a Support System (Even If You’re Independent)
I used to believe I could do it all myself. But Huntington’s humbled me.
Here’s what we now lean on:
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Adult Day Programs: Our local one offers 3 days/week for just $10 total (thanks to a grant that lastet through Sept 2025). Now we have to pay however, again, thanks to Life Insurance or Long-term Care Insurance this helps to cover the costs.
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Meal Delivery for Caregivers: Some counties offer meals through Aging Services programs. I also use meal services like Hungry Root.
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Respite Services: Occasionally I use trusted friends and family to provide breaks for myself. I find I use the majority of that time sleeping or resting unless there is a special project to be done.
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Spiritual Support: Church members help to provide her with activity and care and we are so thankful for their willingness to provide transportation for her while giving myself a brief respite and her with activity and social support.
You don’t have to have dozens of people in your circle—just a few who really show up.
4. Little Systems Keep Big Chaos Away
Here are a few “hacks” we’ve learned:
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Label drawers and rooms to help her remember where things go.
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Shower chair + handheld sprayer = dignity and safety.
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Velcro shoes and tagless clothing = fewer meltdowns, no buttons or zippers. Athletic bras.
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Weighted blanket at night helps reduce anxiety and restlessness.
You don’t have to renovate your home—you just have to rethink your space.
5. Track Changes Without Obsessing
I keep a simple weekly log in a notebook:
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Was she more anxious this week?
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Did she eat well?
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Did she have falls, outbursts, or confusion spikes?
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Did she laugh?
It helps me spot patterns before they become crises.
But I also let go of perfection. I don’t measure every moment. I measure progress in compassion.
6. Give Yourself Grace (and Margin)
Every day, I try to:
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Sit down for one real meal.
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Text a friend who checks in on me.
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Pray or reflect in silence for 5 minutes.
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Step outside—even if just to take out the trash.
These aren’t luxuries—they’re survival strategies.
Caregiver burnout is real. You can’t wait for someone to tell you to rest.
You have to build it into the day like a prescription.
Scripture That Grounds Me
“Come to Me, all you who are weary and burdened, and I will give you rest.” — Matthew 11:28
Sometimes, that “rest” isn’t a nap. It’s a sense of being seen.
Being held. Being carried by a strength greater than your own.
Final Thoughts
Managing the daily chaos of caregiving isn’t about perfection—it’s about rhythm, grace, and adaptability.
It’s about fighting to preserve normalcy in the midst of disorder.
And most of all, it’s about showing up again tomorrow, knowing that love lives in the routines.
Quick Resources:
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Caregiver Log - On Amazon
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Area Agencies on Aging – For meal delivery, day programs, and respite services
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HDSA Local Chapters – For grants, education, and support
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