When the Carer Needs Care: Planning for the Unexpected With Parkinson’s
Imagine a couple who have been married for 40 years.
One partner has Parkinson’s.
The other helps with the things that have gradually become more difficult.
Perhaps they organise medication, prepare meals, drive to appointments or help with getting dressed.
They know the daily routine.
They know which medication needs to be taken and when.
They know which days are more difficult, what helps when symptoms fluctuate and which little adjustments make life easier.
They’ve been doing it for years.
Then one morning, the carer wakes up feeling unwell.
Not just a little tired.
Properly ill.
Perhaps they have flu.
Perhaps they’ve injured their back.
Or perhaps they need to go into hospital unexpectedly.
Suddenly, the person who normally provides the support is the one who needs looking after.
And a question nobody has really discussed becomes rather urgent.
Who looks after the person with Parkinson’s when their usual carer cannot?
The Arrangement That Nobody Ever Formally Made
Many caring arrangements develop gradually.
There isn’t necessarily a meeting where the family decides who will take responsibility for everything.
One person simply starts helping.
At first, it might be driving to a medical appointment.
Then collecting prescriptions.
Then remembering medication times.
Perhaps preparing meals becomes more difficult for the person with Parkinson’s, so their partner takes over.
Eventually, one person may be managing much of the household routine.
And because they’ve been doing it for so long, nobody thinks particularly carefully about what would happen if they suddenly couldn’t.
The arrangement works.
Until it doesn’t.
Being a Carer Doesn’t Mean You Can’t Become Ill
There’s something we sometimes overlook when discussing people who care for relatives with long-term conditions.
Carers have their own health needs.
They get infections.
They develop medical conditions.
They have accidents.
They need operations.
They experience exhaustion.
And as they get older, they may begin dealing with health difficulties of their own.
None of this means they are failing in their caring responsibilities.
It means they’re human.
Yet some carers feel enormous pressure to remain available, regardless of how they’re feeling.
They may postpone their own appointments.
They may ignore symptoms.
They may continue lifting, driving, cooking or managing household tasks when they really need to rest.
Sometimes they worry that admitting they need help will create more problems for the person they support.
But a caring arrangement that depends entirely on one person never becoming ill is a fragile arrangement.
And recognising that isn’t pessimistic.
It’s practical.
What Happens If the Carer Needs to Go Into Hospital?
Consider a situation where a carer is unexpectedly admitted to hospital.
Perhaps they’ve had a fall or developed a medical problem that requires immediate treatment.
The person with Parkinson’s may be perfectly capable of managing many aspects of daily life.
But there may be particular tasks for which they normally rely on their partner.
Who will collect their prescriptions?
Who will prepare meals?
Who will help with personal care if it’s needed?
Who will provide transport?
Does somebody else know the medication schedule?
Does the person have access to important telephone numbers?
And perhaps most importantly, does anybody outside the household know that support may be needed?
These questions become much easier to answer when the family has discussed them in advance.
Start With a Simple Emergency Care Plan
The idea of creating an emergency care plan may sound complicated.
But it doesn’t have to be.
For many families, the most useful starting point is a short document explaining what support the person with Parkinson’s normally receives and who should be contacted if the usual carer becomes unavailable.
It doesn’t need to contain every detail of someone’s life.
It simply needs to provide enough information for another trusted person to understand what may be required.
Think of it as a practical handover document.
Something that could be used if a relative, friend or professional suddenly needed to help.
1. Identify Who Could Step In
The first question is straightforward.
Who would you call?
It might be an adult son or daughter.
A sibling.
A neighbour.
A close friend.
Or someone already involved in providing care.
But don’t assume that because someone is a family member, they’ll automatically be available.
They may live some distance away.
They may have work commitments.
They may have children or other caring responsibilities.
And they may not feel confident providing certain types of support.
It’s worth having a conversation before an emergency happens.
Ask whether they would be willing and able to help.
Explain what might be involved.
And consider having more than one contact.
One person might be able to help with shopping.
Another might provide transport.
Someone else may be available to stay overnight if appropriate.
A backup plan doesn’t necessarily mean finding one person to replace the main carer completely.
It may mean sharing responsibilities between several people.
2. Make Sure Someone Understands the Medication Routine
Medication management can be particularly important for people living with Parkinson’s.
Some Parkinson’s medicines need to be taken at specific times to maintain symptom control.
Delays or missed doses can cause significant difficulties for some people.
That makes an accurate, up-to-date medication list valuable.
Where appropriate, the emergency plan should include:
- The names of prescribed medicines.
- The prescribed doses.
- The exact times they should be taken.
- Any relevant instructions about taking medication with food.
- The prescribing healthcare professional or Parkinson’s team.
- The usual pharmacy.
- Any known allergies or important medication precautions.
The information should be checked against the current prescription or medication record.
It should also be updated whenever treatment changes.
Medication should only be administered by someone who is appropriately able and authorised to do so, following the prescribed instructions.
Importantly, the plan should never encourage someone to change medication doses or timings without professional advice.
If the person with Parkinson’s is admitted to hospital, staff should be informed promptly about their medication schedule.
Some Parkinson’s medicines are time-critical, and certain medications commonly used in hospital may be unsuitable for people with Parkinson’s.
Hospital staff should check the person’s medication requirements and seek specialist advice where necessary.
3. Write Down the Everyday Routine
Medication is only one part of the picture.
There may be many practical details that the regular carer knows instinctively.
Perhaps the person with Parkinson’s finds it easier to get dressed while sitting down.
Perhaps they use a particular walking aid.
Maybe they need extra time in the morning.
Perhaps certain foods are difficult to swallow.
Or they have a particular routine that helps them manage daily activities.
These details may seem obvious to the person who provides support every day.
But they won’t necessarily be obvious to somebody stepping in for the first time.
A short description of the normal routine can be enormously useful.
It might explain:
- Which activities the person manages independently.
- Where assistance is normally needed.
- What equipment or mobility aids are used.
- Any known swallowing difficulties or prescribed dietary modifications.
- How the person prefers to communicate or receive assistance.
- Important daily routines and appointments.
- Who to contact if difficulties arise.
Remember that people living with Parkinson’s have different abilities and preferences.
The plan should describe the individual, not make assumptions based on the diagnosis.
4. Keep Important Contact Details Together
During an emergency, people shouldn’t have to search through old letters, mobile phones and kitchen drawers to find essential information.
Consider keeping an accessible list of important contacts.
These might include:
- The GP surgery.
- The Parkinson’s specialist nurse or clinical team, where applicable.
- The usual pharmacy.
- Family members or friends who have agreed to help.
- Existing home-care providers, if relevant.
- The local council’s adult social care department.
- Any other services already involved in providing support.
The person with Parkinson’s should know where the information is kept whenever possible.
Trusted family members may also need to know how to access it, with appropriate consent.
For privacy and security, avoid including unnecessary financial information, passwords or sensitive details in a document that could be seen by others.
5. Think About What Happens During the First 24 Hours
Sometimes emergency planning becomes unnecessarily complicated because people try to anticipate every possible situation.
A more manageable approach is to start with the first day.
If the main carer suddenly became unavailable tomorrow morning, what would need to happen before tomorrow evening?
Would someone need to visit?
Would medication need collecting?
Would meals need preparing?
Would transport be required?
Would someone need to stay overnight?
Could the person with Parkinson’s remain safely at home with temporary support?
Or would a more substantial care arrangement need to be considered?
Answering these questions provides a useful starting point.
Once the immediate arrangements are clear, families can think about what would happen if support were needed for several days or longer.
What If There Is Nobody Available?
Not everyone has family living nearby.
Some people have no close relatives.
Others may have friends who are willing to help but cannot provide personal care or overnight support.
That’s why an emergency plan shouldn’t rely entirely on informal arrangements if those arrangements are unlikely to meet the person’s needs.
In England, local councils have adult social care responsibilities and may be able to assess needs and arrange appropriate support.
Where an unpaid carer becomes unexpectedly unavailable, the council’s adult social care team should be contacted promptly to explain the situation and request an urgent assessment of what support is needed.
Depending on individual circumstances, available services and eligibility, support might include temporary home care or other short-term arrangements.
However, availability and funding are not automatic, and arrangements will depend on the person’s assessed needs and local circumstances.
If there is an immediate danger or a medical emergency, call 999.
For an urgent medical problem that is not life-threatening, NHS 111 may be appropriate.
Families should not wait until an emergency to find out which local services they may be able to contact.
Carer’s Assessments Are Worth Understanding
In England, unpaid carers can request a carer’s assessment from their local council.
This is separate from the assessment of the person receiving care.
Its purpose is to consider the carer’s own needs, including how caring affects their wellbeing and ability to manage other aspects of life.
A carer’s assessment may identify support that could help make the caring arrangement more sustainable.
It can also provide an opportunity to discuss contingency planning.
Carers do not need to be providing full-time care to request an assessment.
And they do not need to wait until they are overwhelmed before asking about available support.
The assessment itself is free, although any subsequent services may be subject to eligibility and charging rules.
Emergency Carer Schemes
Some local authorities and carers’ organisations operate emergency planning or carer emergency schemes.
These may allow carers to register details of the person they support and identify what should happen if the carer experiences an emergency.
Depending on the local scheme, participants may receive an identification card or access to an emergency contact arrangement.
However, schemes differ between areas, and not every service provides replacement care directly.
Families in Essex can ask Essex County Council’s adult social care service or local carers’ support organisations about current emergency planning arrangements and eligibility.
It’s important to confirm exactly what a scheme provides rather than assuming that registering guarantees immediate replacement care.
What If the Carer Only Needs a Few Days?
Not every interruption involves a hospital admission.
Perhaps the carer needs a minor operation.
Perhaps they’ve been advised to rest following an injury.
Or perhaps they have an illness that makes it difficult to provide their usual support for several days.
Temporary care arrangements may be worth exploring.
These can sometimes include:
- Additional help from family or friends.
- Short-term visits from a home-care provider.
- Support with meals or essential household tasks.
- Temporary day services where suitable and available.
- Respite or replacement care following appropriate assessment.
The right arrangement depends on the needs and preferences of the person with Parkinson’s, the carer’s circumstances and the support available locally.
Where an operation or treatment is planned, there may be time to arrange temporary support beforehand.
That can be much easier than trying to organise everything while the carer is recovering.
Don’t Forget the Person With Parkinson’s
Emergency planning is sometimes discussed as though the person receiving care has no role in deciding what happens.
That shouldn’t be the assumption.
Many people with Parkinson’s manage most aspects of their lives independently.
Others need support with particular tasks.
Some require more substantial assistance.
But the diagnosis itself does not determine someone’s ability to make decisions.
Where the person has capacity to make the relevant decisions, their wishes and preferences should guide planning.
They may have strong views about who they would feel comfortable receiving help from.
They may prefer assistance at home rather than somewhere unfamiliar.
They may want to maintain particular routines.
And they may be capable of managing considerably more than family members assume.
A good emergency plan should support the person’s independence, not unnecessarily remove it.
Sometimes the Carer Doesn’t Want to Ask for Help
There is another difficulty worth discussing.
Some carers are reluctant to involve other people.
They may feel that caring for their partner is their responsibility.
They may worry about inconveniencing their children.
They may believe nobody else will understand the routine properly.
Or perhaps they’ve simply become accustomed to doing everything themselves.
After years of caring, asking somebody else to step in can feel uncomfortable.
But there is nothing unreasonable about needing support.
And sharing practical information doesn’t mean handing over responsibility permanently.
It simply means ensuring that the person receiving care isn’t left without essential assistance if circumstances change.
In fact, making those arrangements may help the carer feel more confident about attending to their own health.
The Carer’s Health Must Not Become an Afterthought
Imagine a carer who has been experiencing back pain for several weeks.
They continue helping their partner because they don’t want to disrupt the routine.
They postpone making a GP appointment.
They keep lifting things that cause discomfort.
Eventually, the problem becomes serious enough that they can no longer provide the assistance they normally offer.
Now two people need support.
This is exactly the kind of situation that earlier attention may sometimes help prevent.
Carers should be encouraged to look after their own health.
That includes seeking medical advice when needed, attending appointments and recognising when particular tasks have become physically unsafe.
For example, regularly lifting or transferring another person without appropriate training or equipment can create risks for both individuals.
An occupational therapist or other appropriate professional may be able to assess safer ways of managing these tasks.
Looking after the carer is part of maintaining a safe and sustainable caring arrangement.
What About Planned Hospital Treatment?
Sometimes the family knows in advance that the carer will be temporarily unavailable.
Perhaps they need a hip replacement.
Perhaps they’re having an operation that will restrict lifting or driving for several weeks.
Or perhaps they have treatment scheduled that will leave them needing support themselves.
These situations provide an opportunity to prepare.
Families can discuss expected recovery times with the relevant healthcare team.
They can identify which caring tasks may be affected.
They can contact adult social care or existing care providers to explore temporary arrangements.
And they can make sure the person with Parkinson’s understands what will happen during the recovery period.
Planning ahead can reduce uncertainty for everyone involved.
Could Technology Help?
Technology may be useful in some caring arrangements.
Medication reminders, shared calendars and digital contact lists can help families coordinate responsibilities.
Some people use personal alarms or telecare services to request assistance in an emergency.
But technology should complement an appropriate care plan rather than replace the human support someone needs.
A medication reminder cannot administer medicine.
A personal alarm cannot guarantee that someone will be immediately available to help.
And a shared calendar is only useful if the people involved know how to access and use it.
The most appropriate tools are those that fit the individual’s circumstances and abilities.
For some families, a clearly written document kept in an agreed location may be more useful than another application.
A Conversation Worth Having Before It’s Needed
Emergency planning can feel like an uncomfortable subject.
People may worry that discussing it sounds pessimistic.
Or that it suggests the carer is no longer coping.
But that isn’t the purpose.
Consider how routinely we prepare for other unexpected situations.
We keep spare house keys.
We insure our homes.
We save emergency telephone numbers.
We arrange for someone to look after a pet when we go away.
None of those preparations means we expect something bad to happen tomorrow.
They simply recognise that circumstances can change.
Supporting someone with Parkinson’s deserves the same practical consideration.
Five Questions Every Caring Household Should Consider
If you don’t already have an emergency care plan, these five questions are a useful place to begin.
- Who would we contact first if the usual carer became unavailable?
- Does somebody else know the medication routine and essential daily support needs?
- What assistance would be needed during the first 24 hours?
- Do we know how to contact local adult social care or other appropriate support services?
- Does the person with Parkinson’s know about and agree with the proposed arrangements, wherever they have capacity to decide?
If you can answer those questions, you already have the beginnings of a useful plan.
If you can’t, that doesn’t mean you’ve done anything wrong.
It simply identifies something worth discussing.
When Both People Need Support
There is one final point that deserves attention.
We often talk about a person with Parkinson’s and their carer as though one person receives support and the other provides it.
Real life isn’t always that straightforward.
A couple may both be managing health conditions.
One person may help with physical tasks while the other manages finances or household organisation.
They may support each other in different ways.
And over time, those responsibilities may change.
In some households, the person with Parkinson’s may also provide care or support to their partner.
That’s why it is important to look at the needs of the whole household rather than making assumptions about who is always the helper and who is always being helped.
Looking After Each Other Means Having a Plan
Nobody can prepare for every possibility.
Life has a habit of introducing situations we never anticipated.
But there is a difference between being surprised by an emergency and being completely unprepared for one.
For households affected by Parkinson’s, a simple emergency care plan can help reduce confusion when the usual routine is disrupted.
It can help relatives understand what support is needed.
It can make important information easier to find.
It can help the person with Parkinson’s retain as much independence and choice as possible.
And it can give the regular carer greater confidence that seeking help for their own health won’t automatically leave somebody else without support.
Because caring should never depend on one person being permanently available, permanently healthy and permanently capable of managing everything.
The person living with Parkinson’s deserves reliable support.
And the person providing that support deserves to know that somebody will be there when they need help too.
Sometimes the most caring thing a family can do is have a conversation before circumstances force them to.
Where to Find Support
If you live in England and need advice about caring responsibilities or emergency arrangements, the following organisations may be useful:
- Parkinson’s UK: Information and support for people living with Parkinson’s and their families. Visit www.parkinsons.org.uk.
- Carers UK: Information about carers’ rights, assessments and support. Visit www.carersuk.org.
- NHS: Information about social care and support for carers. Visit www.nhs.uk.
- Essex County Council: Information about adult social care and support services in Essex. Visit www.essex.gov.uk.
For urgent care needs, contact your local council’s adult social care service. In a medical emergency, call 999.
Join Us at Hullbridge Parkinson’s Cafe
At Hullbridge Parkinson’s Cafe, we recognise that Parkinson’s affects more than the person receiving the diagnosis.
Partners, family members and carers are an important part of our community too.
Our meetings provide a friendly, informal place to enjoy conversation, share experiences and spend time with people who understand some of the challenges involved.
We meet at Hullbridge Free Church, 47–48 Lower Road, Hullbridge, Essex SS5 6DF, on the first and third Tuesday of every month, from 11:00am to 1:00pm.
No booking is required, and new faces are always welcome.
Find out more at https://parkinsonscafe.co.uk/.
This article provides general information and does not replace professional medical, legal or social care advice. Emergency care arrangements, assessments and available services vary according to individual circumstances and local provision.
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