A Day in the Life: Mary & Tom
No two IHSS caregivers have the same day. The needs, relationships, diagnoses, and daily rhythms are as different as the people involved. What follows is one real day — my day, with my son Tom, who has Coffin-Siris Syndrome and requires full-time care.
Tom is an adult. He cannot bathe alone, feed himself, manage medications, communicate danger, or be left unsafely. I am his caregiver, his parent, and his advocate. This is what that looks like.
More caregiver profiles — different situations, different families — are coming soon.
The Night Never Fully Ends
There is no alarm. There is no clear start to the day. I wake multiple times between 3 and 8 AM — there's no telling when. Tom crawls in bed with me, and when we get up depends on him as much as on me. Without the television on through the night, he wakes 10 to 15 times. Sleep is a negotiation, not a given.
We Get Up. The Day Begins.
In Tom's room, I shut off the fan and open the window to air it out for the day. I select clothing for both of us — Tom can't do this himself. We move to the family room. I turn on the radio or television to occupy Tom while I get into the kitchen, because if I don't, he follows me in and the meal prep takes three times as long.
Tom can't have gluten or dairy. He can't chew. Breakfast is one of two options I rotate: oatmeal cooked with a banana, mixed with coconut oil and frozen blueberries — five mornings a week — or mixed with peanut butter and Nestle Quick for variety. It sounds simple. It isn't.
Morning Medications
I count out all of Tom's AM medications. I call in prescriptions if needed. I measure his liquid anti-convulsant meds. I crush his vitamin. I open every capsule and sprinkle the medication directly onto his food — he can't swallow pills.
Then I sit with Tom and feed him. He indicates he's ready for more by opening his mouth. He may or may not stay in his chair. He has an anti-flip chair with a seatbelt — and he can flip it anyway, so the seatbelt is largely decorative.
Changing, Dressing & Daily Check
After breakfast, I change Tom from his overnight 12-hour diaper to his daytime products. These are Medicaid-provided and not particularly effective. I put on a diaper with a pad inside, then a pull-up over that.
During every change, I check Tom's body for bumps and bruises. He has a high pain tolerance and no way to tell me if something hurts, so I have to look for it myself — every single day.
I put on his shorts or pants, shirt, and bandana — the bandana helps with drool. I almost never put on socks. Tom hates them and fights hard to avoid them, and that battle isn't worth it. I brush his hair.
Dishes, Laundry & The Soy Milk Operation
I go to the kitchen and wash dishes. I check the laundry. I check the soy milk supply.
Tom drinks soy milk, and he drinks a lot of it. He will not drink water, juice, or anything else. Soy milk only. I have a soy milk machine — making it is like running laundry, you get everything together, start it, and when it finishes you run the next batch. Six batches every other day, 20 minutes each. On off days, I measure and soak the beans overnight so they're ready. There is no skipping this.
About a year ago, Costco stopped carrying soy milk for four months. Tom's entire fluid intake was suddenly in jeopardy. We found a comparable option. But that's the fragility of this life — one supply chain hiccup and you're in crisis mode.
Teeth, Beard & the Tactile Sensitivity Battle
When dishes and laundry are running, I brush Tom's teeth. Tom is highly tactile-sensitive. Brushing is a genuine ordeal — he scratches, pulls away, and fights me on it. I do the best I can.
Tom has a mustache and beard because shaving is not something he tolerates. Every month or so, I use a cordless hair trimmer to mow everything down — not a razor, because razors mean scratches. It generally takes two to three days to finish and it's often off-center and sometimes never fully done. Haircuts are the same — a snip or two, he runs, and I'm the only one who cuts his hair.
Bath day is once a week. Tom cannot bathe alone, so we shower together. Sudden unexpected movements, being pummelled while I have soap in my eyes — this is why it's weekly and not daily. Tom refuses to stand under the water stream because of his sensitivities, so I rinse him with a cup. About one in five showers, Tom pees on the bathroom floor. By the time we're dressed, I am not clean anymore.
Lunch & The Batch Cooking System
Tom requires very specific food consistency — nothing he has to chew, nothing with gluten or dairy. Several times a week I cook large batches: curries, red beans and rice, and others. I puree and freeze them in individual zip-lock bags.
I also buy giant packages of ground beef and rotisserie chicken from Costco, cook the beef, and bag it in half-cup servings — the correct protein amount for Tom's size and age. The chicken gets pureed and bagged the same way. Fresh vegetables get pureed in half-cup servings too. With all that ready, I can pull together a full meal with protein and vegetables in minutes.
But Tom doesn't live on batch cooking alone. We do tuna salad, egg salad, scrambled eggs with sausage. At restaurants, I'll tear burger meat apart with my fingers at the table, or finely chop a few items that meet his needs. Disneyland, bless them, will puree anything. There's more variety than the system suggests — it just takes constant creative thinking.
I should mention: I'm having wrist surgery in a week. Not being able to chop without pain has already been cutting into the variety I can give Tom. The meals he'd like require hands that work.
And as for cooking one meal for the whole family — how many dishes exist that are dairy-free, gluten-free, soft enough to require no chewing, and that everyone else would enjoy? Not many. I cook Tom's meal. Then I figure out dinner for everyone else.
Out the Door — Errands & Adventures
After lunch we go out. Tom becomes angry and frustrated if we stay home all day, so staying home is rarely an option. The market, the zoo, Costco, car repairs, museums, the pharmacy, the beach — wherever the day takes us.
Tom has no sense of danger and limited ability to follow directions. Every trip out involves constant guidance and vigilance. He has a wheelchair we use for some activities, but I can't push a wheelchair and navigate a grocery store at the same time, and I want to give him healthy walking time — he sleeps better when he walks a lot.
The wheelchair is flip-proof. He can flip it. I took him for a haircut and he flipped the chair halfway through the appointment. He was unhurt. But it means I have that much less freedom — I am tied to him, constantly, for his safety.
Dinner & Afternoon Medications
We head back home and I start dinner. Same system as lunch — pull from the freezer, combine, heat, serve. Or if we've been out somewhere with options, I've already been quietly scanning the menu for what Tom can eat and how I can modify it at the table.
Dinner comes with another full round of medications. Count them out. Measure the liquid meds. Open the capsules, sprinkle on his food. Sit with him. Feed him.
This is not a complaint. This is Tuesday.
TV, Stories & Winding Down
After dinner, Tom and I watch television together. Sometimes I read him a story. These are the hours I love — quiet time, just the two of us, no agenda. Tom is content. I can breathe.
Bedtime Medications
At 8:15, it's time for bedtime medications. I count them out, cut them into small palatable pieces, and serve them with applesauce, jello, or — Tom's huge favorite — pie filling. The pie filling makes the whole thing go down much easier for both of us.
Getting Ready for Bed
After meds, I change Tom into his overnight diaper and pajama pants — no pants in summer. I pull back his blankets. I put on his favorite sleep TV show. Without it on, he wakes 10 to 15 times through the night.
And then I wait for him to be ready.
Goodnight, Tom
Eventually, Tom will come and take my hand. He guides me to his room, where I tuck him in and kiss him goodnight. Sometimes he goes to sleep. Sometimes he comes back out to be tucked in again. And again.
When he's finally down, I make sure the motion detection camera and the seizure camera are both set up and working. Then I try to relax — to unwind, to be a person for a little while — before we start all over again tomorrow.
The Cameras Stay On
The seizure camera runs all night. The motion detection camera runs all night. Tom is not alone in the dark — and neither, really, am I. The caregiving doesn't stop when the lights go out. It just gets quieter.
And somewhere between 3 and 8 AM, we do it all again.
