I stayed in a hotel for two nights recently. A perfectly nice hotel. Clean room, good shower, nothing wrong with it that anybody could have written on a complaint form.
I did not sleep either night.
The duvet was too thick, so I got too hot, so I put one leg out, and then that leg was too cold. The pillows were the fat sort that push your head forward, so I folded one in half and then had a lump instead. The sheets had that slightly slippery finish that hotel sheets have. There was a strip of light under the door from the corridor and a small green dot on the smoke alarm that I could see with my eyes shut. Somebody wheeled a suitcase past at about half eleven. The radiator was on a system I could not turn off and the window opened four inches and no further.
None of it was a problem. All of it together meant I lay there.
On the second morning I was flat, snappy and slightly tearful about nothing, and I remember thinking quite clearly: I am not myself today.
Then I went home, got into my own bed, slept nine hours, and never thought about it again.
That is the whole article, really. I went home.
The list we make, and the list we do not
When somebody moves into a care home we are very good at making lists. Medication, allergies, mobility, continence, next of kin, dietary requirements, whether they take sugar in their tea, whether they prefer to be called Margaret or Maggie.
I have filled in a lot of those forms. They are detailed, they are well meant, and in eight years I do not remember one of them asking what somebody sleeps under.
Not once. Not the tog of the duvet. Not sheets and blankets versus a duvet. Not how many pillows, or whether they are flat or full. Not which side of the bed is theirs. Not whether the door stays open or shut, the light on or off, the curtains drawn or not. Not whether the window has to be open even in February. Not what the last thing they do before getting into bed is.
We ask about sugar in tea, which affects one moment of somebody's day. We do not ask about the bed, which affects eight hours of it, every single night, for the rest of their life.
From a double to a single
Nearly everybody who moves into a care home moves out of a double bed and into a single one. It is such an ordinary detail that nobody remarks on it, and it removes an enormous amount.
It removes room to turn over without thinking about it. It removes the cold side of the bed, which is where you go when you get hot in the night. It removes the habit of sleeping on the left, because that is your side, and it may have been your side since 1968. And for many people it removes the other person who was in it, or the space where that person used to be, which is its own kind of company even years later.
Then we add things. A mattress they have never met. Often a pressure relieving air mattress, which is a genuinely good thing for somebody's skin and a genuinely strange thing to sleep on, because it hums quietly and moves underneath you all night long. Bed rails, sometimes. A bed at a different height from the one they have got out of every morning for thirty years, so that even standing up in the night is a new skill to be learned in the dark.
Almost none of that is bad care. Most of it is good care, properly risk assessed. But it is all new, all at once, on the first night, in an unfamiliar room, usually on the worst week of somebody's life.
Texture is not a preference
For a lot of people, none of this would matter much. They would find the new bed a bit odd for a week and then stop noticing.
For anybody whose nervous system processes sensory information differently, and that includes a great many people with ADHD and autism, it does not stop mattering. It does not fade into the background, because the whole difficulty is that their brain does not file it into the background. The label in the back of the nightdress is still there at two in the morning. The seam of the fitted sheet is still under the shoulder. The duvet is still too heavy, or not heavy enough, and the difference between those two things is not small.
I have written before about how this gets misread in the daytime, in your "non-compliant" resident might be in sensory pain. Night is where it does the most damage, because night is where nobody is watching and everything is quiet enough to hear.
And here is the part specific to the people I write about. This generation was never assessed for any of it. Nobody sat them down at seven years old and worked out that they were sensory avoidant. So there is no diagnosis in the notes and no explanation anywhere. What there is instead is sixty years of quiet workarounds that they invented themselves and never told anybody about, because as far as they were concerned it was just how you get to sleep.
She cut the labels out of everything she owned. He has slept with one foot out of the covers since he was a boy. She has to have the sheet folded back over the top of the blanket so the blanket never touches her chin. He sleeps with the radio on very low, not for the programme, for the sound of somebody talking.
Every one of those is a solution to a real problem. None of them will be on the admission form.
The bit people forget: it smells wrong
Home smells of home. Your own bedding smells of your own washing powder, which you have probably used for decades and stopped being able to smell at all, which is exactly the point.
A care home smells of a care home. One industrial detergent through everything, the cleaning products, other people's dinners, the particular smell of a corridor. It is clean. That is not the issue. It is simply not theirs, and smell reaches the parts of memory that words do not, which is why it can make somebody feel unsafe without them being able to say why.
A care home laundry cannot run a different product for every resident. It is one detergent, at temperature, for infection control, and that is not going to change. So the fix is not the laundry.
The fix is the things that never need to go through it. Let the family bring the pillow. Let them bring the blanket off the back of the chair, the cardigan, the throw. Those can go home with a daughter and come back washed the way they have always been washed, and they will carry the smell of home into a room that does not have one.
And ask the question nobody asks on admission: is there anything in a laundry product that has ever bothered her, on her skin or because she could not stand the smell? If the answer is yes, that is worth knowing before it becomes a rash somebody is treating or a resident who will not get into bed.
What all this looks like at two in the morning
It does not look like a person with a bedding problem. It looks like this.
Calling out. Getting up over and over. Getting dressed at three in the morning. Trying to leave. Stripping the bed. Refusing to go to bed at all and falling asleep in the lounge chair, which is the one place they can actually get comfortable. Getting up in the dark in a room they do not know yet, and falling.
And then it goes in the notes, in the words we all use: agitated, restless, unsettled overnight, resistive to night-time care, wandering with intent, sundowning.
By the end of the second week somebody has written "poor sleep pattern" in a review, and somewhere in the third or fourth week the phrase "we might need to look at something to help her settle" gets said out loud.
So now a woman who could not sleep because the duvet was wrong is being considered for night sedation. She will be more confused in the daytime, less steady on her feet, and more likely to fall. The falls will be recorded as a consequence of her dementia.
I am not accusing anybody of carelessness. Every person in that chain was doing their job properly with the information they had. The information they had did not include the bedding, because nobody asked.
The ten questions
These take about four minutes, and they can be asked of the resident, of a daughter, or of whoever knew them best. They are worth more than most of what is on the admission form.
- What do you sleep under? Sheets and blankets, or a duvet? How many blankets, and how thick?
- Do you like the covers heavy on you or light?
- How many pillows, and are they flat or full? Do you have a favourite one?
- Which side of the bed is yours?
- Do you sleep with the door open or shut? A light on anywhere?
- Curtains open or closed? Window open, even in the cold?
- Do you like the room warm or cool at night?
- Is there any noise you need, or any you cannot bear? Radio, television, complete quiet?
- What do you do in the last half hour before you get into bed, in what order?
- Is there anything about clothes or bedding you have always had to avoid? Labels, wool, anything that itches?
That last one is the one that gets you the fifty years of undocumented coping strategy, and it is the one nobody thinks to ask.
Then write it down so it survives a shift change
"Likes two pillows" will not last a fortnight. It will be lost the first time the regular carer is off and an agency carer makes the bed. Write it as an instruction, with the reason attached, because a reason is what makes staff keep doing something when they are busy.
Mrs Ellis cannot tolerate a duvet. She has slept under a sheet and two blankets her whole life and finds the weight and heat of a duvet distressing. Bed to be made with sheet, two blankets, top sheet folded back so the blanket does not touch her face. Own pillow, brought from home, not to be replaced with a care home pillow. Bedroom door left open four inches with the corridor light off. If she is unsettled overnight, check the bedding first before anything else.
That version survives the night shift, the new starter and the agency carer. "Likes her own pillow" does not.
What I would actually like you to do
If you are a manager: put the bedding questions on your admission paperwork. It costs nothing, it takes four minutes, and it will prevent more night-time distress than any amount of falls training.
If you work nights: next time somebody is unsettled at two in the morning, before you write "agitated", put your hand on the bed. Is it hot? Is the sheet rucked up? Is there a light in their eyes from the corridor? Try changing one thing. Then write down what you changed and what happened, because that is the only way anybody will ever find out.
If you are a family member: there is rarely a box on the form for this, so offer it anyway, in writing, before the move if you can. What she sleeps under. Which side. What she does last thing. It will feel like fussing. It is one of the most useful pieces of paper you will ever hand over.
If you want somewhere to write all of it down properly, that is exactly what the Personhood Profile is for, and there is a section on sleep and night-time routine in it. The sensory guide goes through the rest of the environment in the same way, room by room.
You did not sleep in that hotel either. You were short tempered the next day and you knew exactly why, and if anybody had suggested medication for it you would have laughed at them.
The only real difference between you and her is that after two nights, you went home.