Carers: looking after yourself
There can be many different stresses and strains when caring for someone with Parkinson's. If you're
busy caring for someone, it may be difficult to care for your own
physical and mental health. But recognising your own needs will
help you balance caring with the rest of your life.
It's important to access all of the available help and support for people with Parkinson's and
their carers.
If you have a good quality of life, this will benefit you and
the person you care for.
Image above: Carers' day, Branston Hall, Lincoln
Share experiences with other carers
Talking to other people in a similar situation can help. You can
connect with and chat to other carers on our forum and on our Facebook
page.
Many carers are members of our local
groups and attend meetings and activities, either with the
person they care for or on their own.
Our information and support workers
provide emotional support and practical help for people with
Parkinson's, their carers and
families.
We organise events throughout the year specifically for carers
of people with Parkinson's. Find out if there's anything coming up
in your region or country.
Carers UK has a forum for carers where you can
chat to other carers and find support and share information.
You can also read about other carers' experiences in our
real life stories section.
Your health needs
Letting your own health suffer or allowing stress levels to rise
will not allow you to care well.
- Make sure you attend regular check-ups and screenings.
- As soon as you notice an issue, book an appointment so that any
problems are managed as quickly and effectively as possible.
- Look after your back, especially if you have to lift the person
you care for. Ask your GP, district nurse or an occupational
therapist to advise on lifting, turning or moving aids to assist
you.
- They can also offer advice on mobility
aids to help the person you care for move around the house more
easily without your help.
- A physiotherapist may be able to help you and the person you
care for to maintain general levels of fitness and mobility. You
may be referred to a physiotherapist by your GP, specialist or
Parkinson's nurse.
- Recognise the signs of stress and find techniques to help with
relaxation. Meditation, yoga or massage are just some ways to
relax, but find what suits you best. Activities that absorb your
concentration, such as gardening or reading, can be
therapeutic.
- Learn to recognise the signs of depression. This may affect
carers as well as people with Parkinson's.
You may find these publications useful:
Talking to your GP
Your GP will be the
first stop when accessing health and social
services.
- Prepare for your appointments - keep a diary of how you (and
the person you care for) have been, your feelings and any issues
that have arisen.
- Make a list of things that you want to talk about. Keep the
list short and put things in order of importance.
- If you have particular problems, think about how to describe
them before you see the doctor. Try to be as factual as possible,
and don't feel you have to talk in medical jargon. Just use the
words that you feel comfortable with.
- If the person you care for is happy for you to be there,
accompany them in their appointments with healthcare professionals.
Also, invite them along if you are happy for them to attend your
own appointments.
- Be honest about your needs, your feelings, and what you think
would help.
- If you're not feeling confident, take a friend or advocate with
you. Having someone else in the meeting can help you to remember
what is said. Taking brief notes might help too.
You can read more about getting the most out of appointments in
our Talking to your doctor information
sheet.
Carers' registers
Talk to the surgery's receptionist to get your caring
responsibilities recognised by your GP.
Some GP surgeries have a database of carers. If you are on this,
you will be given special consideration because of your role and
the pressures it may place on you.
It will make all staff aware of your role, giving you more
appropriate appointment times, pointers to other services and
support.
You will also be able to get free flu jabs, information about
events for carers. It will ensure that any outpatient appointments
and admission letters state that you are a carer.
If your surgery doesn't have a carers' register, ask them to set
one up, explaining how it will help staff to be aware of your and
other carers' needs.
Primary Health Care Team
Your GP and primary
care team provide valuable support, advice and information:
- Arranging home visits to you or the person you care for
- Arranging appointments for you and the person you care for at
the same time
- Supplying repeat prescriptions to be delivered to your local
pharmacy
- Putting you in touch with other sources of support and advice,
such as the social work department and local voluntary
agencies
- Providing supporting letters and information for benefits such
as Attendance Allowance or for your
local housing department or blue badge scheme
Respite breaks and time off from caring
A break from daily routines and responsibilities is important,
especially if you care full-time because you are retired or don't
work and are with the person you care for 24 hours a day.
Breaks from caring are often called 'respite care'. This care
can vary from a few hours' break to a longer holiday. You may want
to go away alone, or there may be the chance to go with the person
you care for on a holiday where care is provided.
Time off
from caring responsibilities can be vital. Respite care can help
both you and the person with Parkinson's. It allows you both to
have a break, and perhaps to socialise with other people.
Respite can be given in a variety of ways, including:
- a social services care worker, or someone from a charity such
as Crossroads Care, coming to your
home to care for the person with Parkinson's. This can be
occasional or frequent
- the person you care for spending some time at a day centre,
providing you with time to do your own thing
- the person you care for having short, perhaps regular, stays in
a care home
- trips or holidays together with the person you care for
Carers' assessments
Your local authority has responsibility for arranging services
that help you take a break from caring. This is done through a
carer's assessment.
As a carer, it is your right to have an assessment. After your
assessment, if your local authority agrees you have needs, they
will arrange services to help you.
As well as breaks, this may include any help that would maintain
your own health and balance caring with other aspects of your life,
such as work and family.
To find out more, contact your local authority to ask for an
assessment for the person you care for, and you as the carer.
When help is offered as a result of an assessment, your ability
to pay for that help may also be assessed.
Your local authority will also have information on voluntary
organisations and specialist providers of respite services.
You can find out more about respite care and how to apply for
financial help or services from:
Exercise and diet
A healthy diet and regular exercise are as important for you as
a carer as they are for the person you care for.
Exercise does not need to
be too strenuous. Even a regular walk can help.
It may help to talk to a physiotherapist. They can advise you on
care of your own body, most importantly your back, as well as
prevention of harm to the person for whom you are providing
care.
You can read more in our Therapies and
Parkinson's management section.
Some of our
local groups hold group physiotherapy sessions and exercise
classes for people with Parkinson's and their carers.
Also in this section
Information and support workers
Information and support workers
offer one-to-one information and emotional support to people with
Parkinson's, their families and carers
- email
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