Home ICU for Parkinson's Dementia: A Hospital in the Living Room (Part 3)

After 20 years of caring for my wife with Parkinson's disease dementia, our living room has become a fully equipped home ICU. I built this space myself — an engineer's answer to a disease that never stops taking. This is Part 3 of a 3-part series.

What Does a Home ICU for a Dementia Patient Actually Look Like?

Before sharing the details of our daily life, here is what it takes to care for a bedridden Parkinson's dementia patient at home. If you are considering home-based care for a loved one, this overview may help you plan:

• Medical equipment: Ventilator, oxygen tanks, suction machine, nebulizer, chest wall oscillator, cough assist device, infusion pump, blood pressure monitor, SpO2/CO2 monitors
• Mobility and comfort: Electric hospital bed with auto-positioning, air-circulating mattress topper (DIY), alternating pressure mattress, electric patient lift, bath chair, wheelchair
• Care team: Visiting nurse (3x/week), house-call doctor (monthly), physical therapist (3x/week), dedicated live-in caregiver (10+ years)
• Routine medical procedures: Tracheostomy dressing, PEG tube care, PICC line dressing, IV medications, urinary catheter management
• Hospital visits: Monthly tracheostomy tube replacement, periodic PEG/PICC replacements, emergency room for infections
• Ongoing engineering challenges: Integration of airflow mattress topper and alternating pressure mattress, patient lift redesign, diaper area pressure sore prevention

Why Did We Move to Build a Home Hospital?

If you walked into our apartment in Goyang today, the first thing you would see is a hospital bed in the middle of the living room. Around it: a ventilator, oxygen tanks, a suction machine, a nebulizer, a chest vibrator, an infusion pump, monitors displaying oxygen saturation and CO2 levels, and shelves lined with medical supplies.

This is our living room. This is also my wife's hospital room. It has been both for years now.

For years, we lived in Dogok-dong, Seoul. Twice a week, I took my wife to a functional medicine clinic in Bundang. It meant loading her into a wheelchair, calling a disability taxi, making the trip, waiting, treating, and reversing the whole process. As her condition worsened, the trips became harder. Eventually, just getting into the taxi was too much.

In October 2022, we moved to Goyang. The reason was simple: Goyang had a better infrastructure for home-based care. Visiting nurses, house-call doctors, physical therapists who come to your door. I didn't need a hospital nearby. I needed a hospital that would come to us.

How Did an Engineer Transform a Living Room Into an ICU?

Our living room became a dedicated patient care space. I installed a hospital curtain to create a defined area. Inside it, we set up an electric bed with automatic position changes, my air-circulating mattress topper, an alternating pressure mattress, and everything else she needs.

Our living room, 2026. This is what home caregiving looks like.

The equipment list reads like a small ICU: a ventilator, a blood pressure monitor, a thermometer, a heated humidifier, a suction machine, a nebulizer, an infusion pump for IV fluids and tube feeding, a chest wall oscillator and cough assist device for clearing secretions, an intermittent pneumatic compression device for blood clot prevention, an electric patient lift, a bath chair, a wheelchair, and a massage device.

The shelves hold gauze, disposable gloves, diapers, hand sanitizer, syringes, and dozens of other supplies. Every item has its place. Every piece of equipment has a purpose. The engineer in me organized this space the way I would organize a workshop: everything within reach, nothing wasted.

Who Makes Up a Home Care Team for a Ventilator-Dependent Patient?

I cannot do this alone. No one can.

Three times a week, a nurse from a local clinic visits our home. She handles the tracheostomy dressing, PEG tube dressing, PICC line dressing, administers IV medications and fluids, manages the urinary catheter, and collects samples for testing. Once a month, the clinic's doctor makes a house call to review my wife's condition and discuss improvements to her care plan.

Once a month, a nurse from Severance Hospital visits to replace the tracheostomy tube. Three times a week, a physical therapist comes for manual therapy and rehabilitation exercises. Periodically, we take my wife to Gangnam Severance Hospital for PEG and PICC line replacements. When infections like pneumonia or cystitis are confirmed, we go to the emergency room.

And then there is our caregiver. She has been with us for over ten years. She once told me, "I will take responsibility for your wife until the end. When she passes, I will retire from caregiving." She treats my wife like family. I try to treat her the same way. My wife is fortunate to have her, and so am I.

Why Does a Dementia Patient Need Family Presence Even When Unresponsive?

In March 2020, I was with my wife and our caregiver at the functional medicine clinic in Bundang when my son called. Someone he had met earlier that day had just tested positive for COVID-19. He needed to get tested. We couldn't go home.

So the three of us — my wife, our caregiver, and I — checked into a nearby hotel. My wife sensed something was wrong. She was in an unfamiliar place, surrounded by unfamiliar walls. Her eyes went wide. She would not sleep.

I believe she thought we were abandoning her.

At two in the morning, my son called. Negative. We came back home immediately. But for three days after that night, my wife could not sleep. She kept her eyes open, staring. And whenever I was in the room, she stared only at me.

How could I ever leave her?

That experience taught me something I carry with me every day: even when a patient cannot speak, cannot move, cannot respond, the presence of family matters more than any medicine. She may not be able to tell me she is afraid. But she can feel whether I am there or not.

Since 2008, I have not been away from home for more than three days.

What Engineering Problems Remain After 20 Years of Home Caregiving?

The problems never stop. That is actually a comfort, in a strange way. As long as there are problems to solve, the engineer in me has a reason to get up in the morning.

The airflow mattress topper has been updated several times and still needs improvement. I want to integrate it with the alternating pressure mattress into a single system. The patient lift needs to be redesigned so our caregiver can operate it safely on her own. The cushions need better ventilation.

The hardest challenge right now is preventing diaper rash and pressure sores in the diaper area. It is a problem that never fully goes away, and I have not yet found a solution I am satisfied with. But I will keep working on it.

What Keeps a Caregiver Going After 20 Years?

My wife was forty-seven when the first signs appeared. She is sixty-seven now. Twenty years have passed. She cannot speak, cannot move, cannot eat, cannot breathe on her own. But she is here. She is home. She is with her family.

Celebrating my wife's birthday at home with our caregiver Ms. Kim and Younggu, 2021.

I started this blog because I wanted to share what I have learned. Not as a doctor, not as a nurse, but as an engineer who has spent two decades solving one problem after another to keep his wife comfortable and alive at home.

If you are a caregiver reading this, I want you to know: you are not alone. The path is long and often lonely, but there are others walking it too. I hope something in these pages helps you on your journey.

And to my wife: I am still here. I am not going anywhere.

Frequently Asked Questions About Home ICU Caregiving

What equipment is needed for home ventilator care of a dementia patient?

Based on our experience, a home ICU for a ventilator-dependent Parkinson's dementia patient requires: a ventilator with heated humidifier, oxygen supply (tanks and concentrator), suction machine, nebulizer, chest wall oscillator and cough assist device for airway clearance, infusion pump for IV fluids and tube feeding, SpO2 and CO2 monitors, blood pressure monitor, an electric hospital bed with auto-positioning, an alternating pressure mattress for pressure sore prevention, a patient lift, and a bath chair. According to Korea's National Health Insurance Service, home ventilator programs can offset some equipment costs, but families should plan for significant out-of-pocket expenses for supplies and ancillary devices.

Can a dementia patient who cannot speak still sense family presence?

Yes. In our experience, even in advanced Parkinson's dementia with complete loss of speech and mobility, my wife clearly senses whether family is present. When we once stayed overnight at an unfamiliar hotel, she kept her eyes wide open for three days, unable to sleep - a stress response that only resolved when we returned home. Neuroscience research supports this: emotional awareness and recognition of familiar people can persist even in late-stage dementia when verbal communication is no longer possible. For caregivers, this means your presence matters profoundly, even when there is no visible response.

How do you decide between home care and a nursing facility for an advanced dementia patient?

This is a deeply personal decision. We chose home care because my wife responds to familiar surroundings and family presence in ways that a facility cannot replicate. The trade-off is significant: it required relocating to a city with better home-care infrastructure, converting our living room into a medical space, and building a care team of visiting nurses, a house-call doctor, a physical therapist, and a dedicated live-in caregiver. Home care is not easier — it is different. For families considering this path, I recommend evaluating the availability of visiting medical professionals in your area, as that was the deciding factor for us.

Written by Kwonhee Kim — engineer, professor, and full-time caregiver to his wife living with Parkinson's disease dementia since 2006.

This post reflects personal experience only and is not medical advice. See our Disclaimer.

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