Night Care for Parkinson's: Turning, Toilet Trips, Doses

The short answer

Not being able to turn over is what breaks the nightStiffness holds the body still, so nobody sleeps properly and the same hip and heel take the pressure all night.
The walk to the toilet is the dangerous partNeeding to pee at night is common in Parkinson's, and it comes when the tablets are weakest and the legs least reliable.
A dose in the dark needs somebody awakeParkinson's medication should not run late or stop suddenly, and a carer who is asleep cannot give a 3am tablet on time.
Count the wakings before you bookUp to two short wakings a night is a sleeping night. Three or more, or one that runs past twenty minutes, is a waking night.

A sleeping night from a carer on PrimeCarers is £130 to £145, a waking night £150 to £160, with our fee included. Agencies charge from £150, and up to £240 for a waking night.

Turning in bed

Why not being able to turn over breaks the whole night

In the day, stiffness is something you watch somebody fight through. At night a person lying in bed with rigid muscles cannot get comfortable and cannot move the weight off one side.

Parkinson's UK puts it plainly: stiff muscles might make it difficult to turn over in bed, and satin sheets or satin pyjamas can help, though not both together, because the person can slide out of bed. If the medication wears off in the night, stiffness, tremor or pain may interrupt sleep. NICE has a name for the worst of it, nocturnal akinesia, and recommends a specialist consider levodopa or an oral dopamine agonist, with rotigotine if those do not work. Raise it with the Parkinson's nurse before deciding the answer is a person in the house. The Parkinson's care guide covers what changes at each stage.

	Managing it alone	With a carer in the house
Wanting to turn at 2am	They wake, try to roll, and cannot. Some lie still until morning rather than wake their husband or wife again.	A hand under the shoulder, the pillow moved, and they are settled in a couple of minutes.
Skin	One hip, one shoulder and one heel carry the pressure for seven or eight hours at a stretch.	Position changed in the night, and the skin looked at in the morning, so a red patch is caught early.
Getting out of bed	The hardest movement of the night, attempted alone and half asleep.	A planned transfer, with the bed at the right height and somebody standing where they can help.
The person beside them	Woken several times and lying awake in between, night after night.	Asleep, in their own bed or the spare room, for the first time in a long while.

Wanting to turn at 2am

Managing it alone: They wake, try to roll, and cannot. Some lie still until morning rather than wake their husband or wife again.
With a carer in the house: A hand under the shoulder, the pillow moved, and they are settled in a couple of minutes.

Skin

Managing it alone: One hip, one shoulder and one heel carry the pressure for seven or eight hours at a stretch.
With a carer in the house: Position changed in the night, and the skin looked at in the morning, so a red patch is caught early.

Getting out of bed

Managing it alone: The hardest movement of the night, attempted alone and half asleep.
With a carer in the house: A planned transfer, with the bed at the right height and somebody standing where they can help.

The person beside them

Managing it alone: Woken several times and lying awake in between, night after night.
With a carer in the house: Asleep, in their own bed or the spare room, for the first time in a long while.

Care description rather than treatment. The Parkinson's nurse, the GP and the district nurse set the medication and the skin care plan.

The skin part matters more than families expect. The NHS lists problems moving among the things that put somebody at risk of pressure ulcers, and says changing position regularly is one of the best ways to prevent them. The early signs are a patch of skin that does not change colour when pressed, or skin that feels warm, spongy or hard. If your relative cannot shift their own weight, ask the GP for a district nurse review and about a pressure-relieving mattress. Where turning has to happen several times a night, live-in care for Parkinson's is usually where families end up.

The toilet at night

The walk to the bathroom at three in the morning

Getting up to pee in the night is one of the symptoms the NHS lists for Parkinson's. What makes it dangerous is when it happens, because the last dose is hours behind and the body is at its slowest.

The NHS symptom list includes having to get up frequently in the night to pee, and Parkinson's UK adds that if the urge comes during an off period it can be harder to get there in time. Somebody wakes needing to go urgently, stands up stiff and unsteady, crosses a dark landing, freezes in the doorway, and then hurries. What happens when someone freezes covers that in detail, and off periods and what a carer does while they last explains why the small hours are the worst part of the day.

What helps

A urinal, a bottle or a commode within reach of the bed, so the walk does not have to happen
A low light that comes on by itself, so nobody crosses a dark landing
The route cleared once, in daylight, with the rugs and the trailing flex taken out of it
Asking the GP or the Parkinson's nurse to refer them to a continence adviser
Somebody there to walk with them, the only thing here that also gets them back to bed

What tends to go wrong

Cutting fluids right down in the evening, which can leave a person dehydrated and more confused
Assuming a grab rail solves it, when the difficulty is starting to move rather than holding on
Leaving the walking frame in the hall, where it cannot be reached from the bed
Treating a sudden rise in night-time trips as Parkinson's, when a urine infection does that too

Parkinson's UK warns against cutting fluids too far overall. For the room-by-room version, night care for someone who falls or is up all night goes through the bed, the landing and the bathroom.

Doses in the dark

The dose that falls in the small hours

Parkinson's medication replaces something the brain has stopped making, and the timetable is the treatment. It does not pause at bedtime for everybody: some people have a dose due at midnight, a slow-release tablet last thing, or a patch that goes on at a set time.

NICE is direct about this. Antiparkinsonian medicines should not be withdrawn abruptly or allowed to fail suddenly, because of the risk of acute akinesia or neuroleptic malignant syndrome, and people admitted to hospital or a care home should have their medicines given at the appropriate times. Parkinson's UK campaigns on the same point under the name Get It On Time, because so many people do not get their tablets on time in hospital. Nothing about that changes at home, or at three in the morning. Medication on time, every time sets out the daytime timetable.

The carer is up and doing somethingThe part that goes wrongAsleep

10pm
The last dose and settling
Tablets, nightclothes, a drink within reach, the bed at the right height. The carer notes the time the dose went in.
1.30am
Stiff and unable to turn
Two or three minutes. A hand under the shoulder, the pillow moved, and back to sleep.
3am
Needing the toilet
The dose is five hours behind, so this is the trip where people fall. A carer walks with them rather than waiting to hear something.
5am
Awake, stiff and waiting
The gap between the last dose and the first is the longest of the day, and some lie awake through it.
6.30am
The first dose
Given before the effort of getting up begins, so it has thirty to sixty minutes to work while your relative is still comfortable.

Carers on PrimeCarers are self-employed, so what any one of them will do with medication is agreed with them directly before the first night. What carers can and cannot do with medication explains prompting, assisting and administering. Whoever you book, put the dose times in writing.

Dreams and hallucinations

Acting out dreams, and seeing things at night

Two different things happen in Parkinson's bedrooms and get mistaken for each other. One is a sleep disorder that turns dreams into movement, and the other is seeing or believing things that are not there.

Parkinson's UK says rapid eye movement sleep behaviour disorder affects around half of people with Parkinson's, and describes it as acting out your dreams while asleep: kicking, shouting, punching, or falling out of bed. NICE tells clinicians to take care to identify and manage it in anyone with Parkinson's and disturbed sleep, and to consider clonazepam or melatonin once a medicines review has looked at drug causes. On hallucinations and delusions, NICE says clinicians should ask about them at review appointments, carry out a general medical evaluation to find anything that triggered them, and not change Parkinson's medication without specialist advice.

Make the bedroom safe first

Clear the floor beside the bed, move the bedside table and lamp out of reach, and think about where somebody would land. This is what is recommended for acting out dreams.

Before anything else

The husband or wife in the same bed

Being kicked or hit in the night is a common reason couples separate beds, and people feel disloyal admitting it. Tell the Parkinson's nurse. It is a symptom with treatments.

Say it out loud

A frightened waking

Not arguing with what somebody is seeing, and not agreeing with it either. A calm voice, a light on, a familiar face, and the room made ordinary again.

What a carer does

New confusion is not only Parkinson's

An infection, dehydration, constipation or a recent medication change can bring on confusion in a day or two. NICE asks for a general medical evaluation, so ring the GP.

Worth a call

For a carer this is not treatment. It is being awake, keeping everybody safe, and writing down what happened so the Parkinson's nurse has something to work with. Where confusion at night is the main problem rather than movement, night care for dementia goes further.

The person listening out

The husband or wife who has not slept properly in a year

In many of the families who reach this page, somebody has been doing the nights already. They sleep with one ear open, get up three or four times, and then do the whole of the next day on that.

Has this been true for the last month or two?

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The nights

You wake before they call, because you are listeningBroken sleep with no deep stretch in it is why people feel wrecked after a night they were only up twice.
You are helping with turning, the toilet or tablets more than twice a nightThat is the line carers draw between a sleeping night and a waking one, and it applies to you too.
You have moved to the spare room, or stopped yourself because you feel you should notSleeping apart is not giving up. Two people who sleep are better for each other than two who do not.

The days

You are dozing in the afternoon and driving when you are too tiredThis is where a family carer stops being tired and starts being at risk.

The practical side

Nobody has asked how you are copingA carer's assessment from the council is free, and anyone over 18 who looks after somebody regularly can ask for one.
You have not looked at Attendance AllowanceSupervision at night is part of what it is for, and its higher rate is for help or supervision through both day and night.
You have not told the Parkinson's nurse what the nights are likeThey can only adjust the night-time medication if somebody describes it to them.

Take the council route even if you expect to pay for care yourselves. A carer's assessment looks at how you are coping rather than at your relative's needs, it is free and open to anyone over 18, and NICE tells clinicians to advise families of their right to one. Attendance Allowance is not means tested, and the night-time part is often what families have not realised applies to them. If what you need is to sleep two or three nights a week, overnight care so the family carer can sleep is written for that.

Which kind of night

Sleeping night, waking night, or a live-in carer

Carers generally treat up to two short wakings a night as a sleeping night, and three or more, or any single waking that runs past twenty minutes, as a waking night. Here is how each Parkinson's night pattern falls on that line.

What happens in the night