The following tips are based on information contained in The Complete Carer’s Guide1
and suggestions made by
other carers. They may help you overcome the tiredness and stress that many
carers feel, and enable you to cope mentally and physically with the all
challenges that caring brings.
1. Getting information
-
Gather all the information you need to give you
support and help you as a carer. Your local Parkinson’s association and
any carers organisations that operate in your country should be able to
advise you on what is available and give you leaflets, booklets and other
resources. The EPDA also publishes many useful resources on their websites.
- The health/social care
professionals you are in contact with can also provide you with support
and information.
2. Social services
- Make sure you have access
to any health or social care services that are available to you –
including anything that is provided specifically for carers. This might
include equipment to help you and the person you are caring for to manage
personal tasks, such as bathing.
- Ask for a social services
assessment for the person you are caring for and a carers’ assessment for
you. What there is and how you access it will depend on arrangements in
the country in which you live. Your doctor or local Parkinson’s
organisation should be able to provide you with more information.
3. Keeping records
- Keep a diary or record of
the symptoms and difficulties that the person you care for has, and the
details of your role. This can help you keep track of how caring for
someone affects you and assist you when communicating with health and
social care professionals.
- Some people find it helps
to keep a worry pad with them, particularly by the bed, to jot down their
worries during times of anxiety or through sleepless nights. This helps
them to focus on troubling issues as part of their daily routine and can
prevent them from being kept awake at night.
4. Financial help
- Check what financial
benefits you are entitled to. Your
local Parkinson’s organisation should be able to provide further advice or
signpost you to sources of information about any financial benefits that
may be available to you and the person you are caring for.
5. Dealing with emotions
- Accept your feelings and
talk about what you are doing.
Don’t be surprised if you have complex, conflicting and fluctuating
emotions about caring, even if you love the person you are caring for very
much. Talking about your feelings and what you are doing is important.
Some people prefer to talk to the person they are caring for or to family
and friends. Others find it helps to talk to people who are not so closely
involved in their lives, such as a counsellor, helplines or support groups.
Your doctor or other healthcare professionals should be able to provide
further information.
- Remember: value yourself
and what you do – self-esteem is important in maintaining a positive
attitude and coping well.
6. Networking and support
- Try to have contact with
other carers. Many carers find contact with other people who are in a
similar situation is the key to survival, providing invaluable mutual
support, information, ideas and friendship. There are a number of ways to
make new friends, including joining support groups at your local
Parkinson’s or carers’ organisation, telephone-befriending networks and
Internet forums. Your local Parkinson’s or carers’ organisations should be
able to advise on what is available in your area.
- Delegate some tasks if you
have family or friends who are willing to help.
- Seek advice from a
health/social care professional about other alternatives that are
available and do accept offers of help or respite care. Without some
respite you may become run-down. Even a short break or outing can boost
energy levels and your wellbeing.
7. Encouraging independence
- Encourage the person you
care for to be as independent and as positive as they can, and plan things
together where possible. This will promote their emotional and physical wellbeing
and improve self-esteem and ease your responsibilities.
- Ask friends to visit if
the person you care for is unable to get out much can keep them in touch.
- Sharing the past together,
using photo albums, music and books for example, can help to keep spirits
up.
- Wherever possible, promote
independence on the part of the person you are caring for, even if this
means activities take longer.
8. Asking for help
- Accept that there may be
times when you feel negative or overwhelmed – this is a natural reaction.
Make it clear what you are willing to do and don’t be afraid to ask for
help when you need it.
- Be realistic about what
you can achieve, and don’t push yourself too hard. Sometimes breaking down
large difficulties into smaller, more manageable pieces can help. Don’t
assume because you are a carer that you have to do everything
single-handedly.
- Learn to say no. Being assertive is a positive, not an
aggressive approach. There is no
point in saying yes when you know that this is going to add to your stress
and overload you.
- Although it may seem
impossible, alternatives can often be found for the aspects that you are
not able or do not want to do. Any health or social care professionals you
are in touch with may be able to help you find solutions.
9. Looking after yourself
- Make sure you maintain
your own health and keep time for yourself. You should try to eat well,
exercise regularly, and learn relaxation techniques.
- Incorporating ‘winding
down’ time into your evening routine can help you sleep better.
- Remember that exercise
stimulates endorphins
which help to reduce stress and anxiety.
- If possible, encourage the
person you care for to remain active too. Exercising together can be
enjoyable and beneficial to you both.
10.Taking time off and holidays
- Don’t make caring and
Parkinson’s the sole focus of your life
- Having time away from each
other to pursue individual interests is also important, so take regular
breaks from caring. This involves making use of any respite care
facilities that are available to you in your local area, or perhaps taking
a holiday without the person you care for, so that you have time to
recharge your batteries. Don’t feel guilty about doing so, as a break will
make you much more able to cope with the challenges of being a carer when
you return.
- Make sure that both of you
have things that you like to do together that are not about Parkinson’s or
health.
- If you plan to take a
holiday with the person you care for, plan well ahead to avoid problems (See
the section on Travel
for advice). If you find your
responsibilities overwhelming or you feel depressed and exhausted, talk to
your doctor as a matter of urgency.
11.Maintaining a lighter perspective
- A sense of routine and
normality will help both you and the person you are caring for maintain
interests which lie outside living with the condition.
- Keeping your sense of
humour is also very important. Many carers say that seeing the funny side
of things has benefited them and the person they care for enormously.
Laughter is very therapeutic and can help everyone to keep things in
perspective.
