Stroke A Carer’s Guide When Someone Close To You

Stroke A Carer’s Guide When Someone Close To You

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Stroke: A carer’s guide
When someone close to you has had a stroke, they may need ongoing help
and support after they return home from hospital. This factsheet aims
to provide you with guidance if you are caring for a stroke survivor
at home. It outlines some ways to help you in your new role, and
explains what help and support is available.
What is a carer?
A carer is someone who provides unpaid support to family or friends
who could not manage without this support. One in 10 people in the UK
is a carer. Often people do not choose to become carers, it just
happens, and many people feel that they are doing what anyone else
would do in the same situation.
Being a carer can be a kind, admirable and selfless act. At times
though, it can be challenging and carers have told us that they
sometimes feel overwhelmed, exhausted and isolated. Taking on caring
responsibilities can also affect your finances. If you are about to
start caring for someone after a stroke it is vital that you have the
right information and support to help you both.
Coping in the early days
Stroke is a sudden and serious condition and can come as a shock.
Suddenly seeing a loved one unwell can be very upsetting. You might
not understand what has happened or may find it difficult to know how
to support them. It is natural to feel overwhelmed, but as you come to
terms with what has happened, you might want to know how you can help.
Here are some ideas.
*
Start by talking to the medical team. Ask them to explain what has
happened and clarify anything you do not understand.
*
While your loved one is in hospital, it can help to keep a note of
day-by-day changes. The medical team will find this helpful, as
you may be the first to be aware of any changes or improvements.
For the person who is recovering, this may become a precious
record of their progress since their stroke.
*
Ask the medical team whether there are any small ways in which you
can assist with your loved one’s care. As time goes on, ask the
rehabilitation team to show you ways to provide support in between
therapy sessions such as helping your loved one re-learn skills,
or practising therapy exercises together.
*
Focus on one day at a time. Recovering from a stroke is a gradual
process. Encourage and motivate your loved one as much as
possible.
*
Keep hold of useful information and contacts. Your needs can
change over time, and you may find it is helpful in future.
*
Remember to look after yourself. Take breaks, get some exercise
and plenty of sleep, and plan regular healthy meals.
The impact of stroke
Stroke can have many different effects, including problems with
mobility, swallowing, continence, vision, communication, tiredness,
memory and concentration. It can also affect your emotions and can
cause depression, anxiety or personality changes. These changes can
have a big impact on everyone.
You may feel a deep sense of loss as the person you know and love may
not be the same. And sometimes, these changes can affect your feelings
towards them.
Keep reminding yourself, and others, that any changes are the result
of the stroke and that they have no control over them.
Working together with family or friends and supporting one another
will help you all to come to terms with what has happened.
Family members who live far away also have a role to play in keeping
up morale. You may find it helpful to nominate a contact person, who
can keep the rest of the family informed. This will take some pressure
off you and give you more time to rest and recuperate.
Recovery
Recovery from stroke is difficult to predict, so planning for the
future can be hard. The amount of recovery someone will make and the
amount of time it takes varies. Recovery may take several weeks or
months, and it can continue for years.
Some people make an almost full recovery. Most people recover enough
to be able to do many of the things they did before, perhaps with some
support. Some people, however, will improve only a little and may need
substantial community or residential care.
If your loved one is likely to need a lot of support after leaving
hospital, you may decide to become their main carer, responsible for
their day-to-day care. You may have already been their carer, but the
effects of the stroke may have changed the amount of care they need.
Caring for someone can take up a lot of energy and requires
perseverance so it should not be undertaken lightly. It may be helpful
to talk to someone before you make a decision about becoming a carer.
You can call our Stroke Helpline, or contact one of the carers’
charities (see Useful organisations).
Leaving hospital
Some people leaving hospital after a stroke only need a small amount
of care, but others have more complex needs. The medical team and
social services should work together with you, and the person you are
caring for, to create a care plan based on their needs.
Part of this process should include a community care assessment for
your loved one to determine what support they need, and a carer’s
assessment of your needs.
Carer’s assessment
If you are going to be a carer, you have a right to have an assessment
for your needs to be considered. This is called a carer’s assessment.
You are entitled to an assessment and to receive help even if the
person you care for refuses help.
A social worker, or another professional nominated by social services,
will carry out your assessment. They will look at your role as a carer
and the affect it has on you. The assessment will establish how much
caring you do (or will do) and how that affects other areas of your
life such as work, training or leisure activities. You can ask for the
assessment before you start caring, or at any other stage if you have
already started being a carer.
Before your assessment, think carefully about what kind of support you
might need. This can be difficult if the person you are caring for has
not returned home yet, but staff at the hospital may be able to give
you information about the tasks your loved one will need help with.
What help will we receive at home?
Healthcare
Once the person you are caring for is at home, their GP becomes
responsible for their medical care. The medical team should write to
the person’s GP, giving information about their treatment and future
care needs, including medication. You may wish to contact the GP to
ensure that they know the person you are caring for is coming home.
Community or district nurses can provide nursing support for people
living at home. The GP can make a referral to see one. They may offer
practical help with tasks such as moving, washing, feeding and
dressing, and show you how to do them. They will also have skills in
more specialist areas such as feeding for people with severe
swallowing difficulties, continence and caring for wounds and leg
ulcers.
Community or district nurses may also help with rehabilitation
exercises, arrange equipment such as a wheelchair, commode or hoist,
or give advice on arranging your home to make caring easier.
Intermediate care
In some areas, intermediate care services are available (sometimes
called early supported discharge). These are services to help a person
return home sooner and become as independent as possible. They can
include community rehabilitation services such as physiotherapy,
speech and language therapy and occupational therapy as well as
personal care, given to the person at home rather than in hospital.
Before they leave hospital, the person you are caring for may be
assessed for these services and a structured plan may be made with
agreed goals and timescales for the therapist and patient to work
towards.
Rehabilitation
If the person you are caring for does not receive intermediate care,
they may still be able to receive further rehabilitation once they are
at home. Community rehabilitation services can include speech and
language therapy, physiotherapy and occupational therapy. Ask a member
of the medical team at the hospital, or their GP, if they have already
come home, about receiving rehabilitation at home.
Local authorities will usually only provide services for people who
have the highest levels of need. They vary in what help they can offer
and the person you care for may need to contribute to the cost.
Community care
Community care services
These services may help with personal care (for example, getting in
and out of bed, bathing, dressing), day care, meals on wheels and
respite care. They often involve carers coming to your home to help
with specific tasks.
Local authorities will usually only provide services for people who
have the highest levels of need. They vary in what help they can offer
and the person you care for may need to contribute to the cost.
Aids and adaptations
Your local authority can arrange for someone (usually an occupational
therapist) to assess what aids or adaptations would make life easier
at home such as grab rails or ramps. If they need major adaptations to
their home are needed, the person can apply for a Disabled Facilities
Grant from their local authority (England), Care and Repair (Wales) or
the Northern Ireland Housing Executive. In Scotland the Home
Improvement and Repair Grant scheme applies.
Local support
You should be given information about local groups and services for
people who have had a stroke and for you as a carer such, as a day
centre that the person you care for can attend.
Respite care
Respite care (sometimes called short breaks) is designed to give
carers a break. It could be:
*
care at home from a trained care assistant or volunteer, for a few
hours a week.
*
care outside the home, for example, at a day centre or social club,
or
*
longer breaks – (from days to weeks) in a residential or nursing
home.
The respite services offered vary widely, so ask your local authority
about what is available in your area. Services may be provided by the
NHS, social services, voluntary or private organisations. If the
person needing care is eligible for NHS respite care, it is usually
free. Other respite care services may charge, or ask you to contribute
towards the costs.
The cost of care services
Charging for community care services is complicated. Local authorities
can charge for some or all of the services they provide. There may be
a flat rate for a service or it may be means tested, so they will ask
about the person’s income and savings and then charge according to a
sliding scale. Free personal care is available for people aged over 65
in Scotland.
If you need advice about paying for community care services, speak to
a specialist organisation like the Citizens Advice Bureau or a carer’s
centre. Their contact details are listed in the Useful organisations
section.
Direct payments
If you (or the person you care for) have been assessed as having
needs, it is your right to receive direct payments instead of services.
This means your local authority will give you money directly so you
can choose how to arrange your own services. This will give you more
choice and control over the support you receive. For example, you can
use the payments to help with taxi fares, a short holiday or help with
housework.
Direct payments are voluntary so you do not have to have them if you
would rather receive services directly from your local council.
Direct payments are available throughout the UK but there are slight
differences in the way the scheme works in different countries.
Contact Carers UK (see Useful organisations) for more information.
What if my situation changes?
A review of your care plan should take place once your loved one has
returned home. You should be told when and how frequently it will
happen. If this does not happen or the person you are caring for was
not admitted to hospital, contact your local authority and ask for a
community care assessment.
Caring from a distance
Many families live away from the person who has had a stroke, and they
may have significant family and work commitments. If it’s only
possible for you to provide occasional support, you should make it
clear to the health professionals involved that you will continue to
live apart from the person you are caring for, and that while you are
involved in planning their return home, you will not be able to
contribute to their day-by-day care.
If you are arranging ongoing care for a person after a stroke but live
elsewhere, there are a few things that you might want to consider to
help them at home. Install fire or smoke alarms or door entry systems.
You may want to consider a community alarm (a 24-hour phone link to
the local emergency response centre). Ensure that the person can
easily find everything that they might need (for
example, medications), and try using weekly planners, placing them
where they can easily be seen.
Think about what aids and adaptations the person might need and take
steps to reduce the risk of falls – social services should be able to
advise you on these issues. See our resource sheet R3 Aids and
equipment for independent living for more information.
Legal matters
You may find that the person you are looking after has difficulty
managing their affairs. He or she may be unable to sign cheques, or
may have difficulties in making or communicating their own decisions
(sometimes referred to as a lack of mental capacity).
If they have physical difficulties, using an adapted pen and a
clipboard or non-slip mat, or a credit/debit card template may help to
produce a consistent signature. Ask their bank if they have any
templates. In England and Wales, a facsimile stamp (rubber stamp) may
also be used. For more information contact the British Bankers
Association (see Useful organisations).
When the effects of stroke are more complicated and include problems
with memory, thinking and understanding, legal powers may be needed.
If someone is unable to make their own decisions, they can appoint
someone to have Lasting Power of Attorney (LPA) for them. This could
be a family member, friend or carer. This nominated person would then
be able to make decisions about their property and finances or their
health and welfare, if, in the future, they are unable to do so
themselves. You can appoint more than one person to have an LPA for
you.
There are two types of LPA. A property and affairs LPA can make
decisions about income, bills and the sale of a person’s house. A
personal welfare LPA, can make decisions on where the person will live
and the day-to-day care or medical treatment he or she may receive. In
Northern Ireland there is only one type of Power of Attorney, called
an Enduring Power of Attorney, which covers property and affairs, but
not healthcare.
A person must be mentally well to set up a Power of Attorney. If the
person you are caring for has already lost the ability to make
decisions, you can apply to take over their finances and become a
‘deputy’. This is a different process. If you live in England or
Wales, you apply to the Court of Protection. In Scotland, you apply to
the Scottish Office of the Public Guardian. In Northern Ireland, you
apply to the Office for Care and Protection. The contact details of
each are listed at the end of this factsheet.
Financial impact
If you’re caring for someone you may be faced with higher heating
bills and costly equipment or home alterations. Your loved one may
have had to give up work because of their stroke, or you may be
considering giving up work. Inevitably this will reduce your income
and social contact.
It may help to consider reducing your hours, or finding a job nearer
home. Some carers have the right to request flexible working hours,
and though employers are not legally bound to agree, there must be a
good business reason for saying no. See Carers UK’s booklet Carers and
employment: a guide to the right to request flexible working for more
information.
If you become a full-time carer, you may be entitled to claim Carer’s
Allowance. You can claim this if the person you are caring for is
receiving Attendance Allowance or the higher or middle care component
of Disability Living Allowance (Personal Independence Payment from
2013/14). It is a means-tested benefit and so will depend on any other
money you have coming in.
If you decide to give up work, check what help you are entitled to
under your pension scheme (if you have one). If you are not working or
claiming Carer’s Allowance, you may be able to claim Carer’s Credit to
help protect your state pension. Contact Carers UK for more details.
The benefits system is complex so seek specialist advice about what
you are entitled to and help with filling in claim forms. See our the
Useful organisations section and resource sheet R1, Benefits and
financial assistance for more information.
What if my loved one can’t come home?
Caring for the person affected by stroke at home may not be the best
or most feasible solution. You might consider other options, such as
sheltered housing (where a warden can look in regularly), or a care
home. This may be a very difficult decision to make and not one that
you will make lightly or quickly. Contact a carer’s organisation or
see the booklet When caring comes to an end by Carers UK and Help the
Hospice for more information.
Your local authority will be able to provide an assessment, and
information on care homes and funding available. Our factsheet F20
Accommodation after stroke may also be helpful.
Looking after yourself
A stroke can have a huge impact on the
whole family. It is common for someone who has had a stroke to feel
quite low on returning home and to need a lot of encouragement. They
may have less control over the small, everyday decisions many of us
make without thinking – when to get out of bed, take a shower or phone
a friend, and this can be difficult to cope with.
You and other family members may be faced with new roles and
responsibilities. You may find yourself suddenly having to take over
tasks such as cooking, housework or managing the family finances
because the person you care for can no longer do them. You may need to
think about learning to drive, rearranging your home to make it safer,
or even moving house.
You may need to help your loved one with a daily therapy routine or by
finding new activities and pastimes for them. This may take up your
time, but will be worth it in the long run.
Caring for someone who is dependent on you is a huge responsibility.
It is realistic, not selfish, to think carefully about taking care of
yourself. If you don’t look after yourself, you risk becoming stressed
or exhausted and this could also affect the person you are caring for.
When your loved one first comes home, keep a diary for a week. This
may help you establish what help or support you need. Social services
should review the situation from time to time to see whether your
needs have changed, but if your situation changes, ask for a review
straightaway.
Back strain is a common problem caused by lifting or moving someone. A
community or district nurse or physiotherapist can teach you how to
move someone safely so you don’t strain your back. They may also be
able to show you relaxation techniques to help with tiredness or
stress. Your local carers’ centre may offer classes to overcome these
issues. A gentle exercise routine that gets you out of the house can
increase your energy levels and help you feel more positive.
It’s important to recognise if you’re feeling tired or depressed.
Taking regular breaks is crucial. This might involve a few hours to
yourself every day or arranging more formal respite care. Try to
organise the day so that you have at least a little time to yourself.
Ask family members or friends for help with specific tasks, if you
need it. You may also want to find a local carers’ support group to
meet others in the same position as you.
A carers’ centre or organisation can offer advice, information and
practical support in your area. You can find their details by
contacting the Stroke Helpline, social services, your GP, or the
hospital where the person you are caring for was treated after their
stroke.
Many carers can feel socially isolated. Friends may avoid contact
because they are not sure how to behave towards someone who has had a
stroke. You may also worry about leaving the person you are caring for
alone whilst you socialise with people. Try to keep in touch with
others. While some friendships may fade away, you can build up new
ones with people who share your interests. Stroke clubs and carers’
groups can be a good starting point. Contact us for details.
Tips to help recovery
Many carers ask us how to they can help the person they are caring for
to recover. Becoming a carer and supporting your loved one is a great
start to making them feel independent again. Here are some suggestions
that may help.
• Ask for guidance from the professionals who have played a major role
in your loved one’s recovery. Their input will help you.
• Encourage the person to take on family responsibilities right from
the start. You may need to find new roles that are manageable to help
to boost their confidence and maintain their relationships with other
family members.
• Try not to be overprotective. You need to find the right balance
between helping the person you care for and developing their
independence. Encourage them to do as much as they can, right from the
start. This may be a very slow and can be frustrating at first, but in
the long run it is the best way to help someone.
• Be patient. Stroke damages the brain, which can make it difficult to
relearn even simple tasks.
• Set up a daily routine that works for both of you. This may take
time, but will be worth it. Think about the daily tasks that the
person can either do independently, can start to relearn or will need
help with. Plot the time that each task will take then draw up a list
of small steps towards relearning some of the missing skills. Build in
short, but frequent, periods in the day to practise movements,
exercises and skills.
• Be positive. Recovering from stroke is a slow process and so your
praise is needed for every sign of progress, however small. Reassure
the person that you are caring for that things can get better,
especially when progress seems slow.
Useful organisations
All organisations are UK wide unless otherwise stated.
Stroke Association
Helpline: 0303 30 33 100
Email: [email protected]
Website: www.stroke.org.uk
Contact us for information about stroke, emotional support and details
of local services and support groups.
Useful organisations for carers
Carer's Direct (NHS) (England and Wales)
Tel: 0808 802 0202.
Website: www.nhs.uk/carersdirect
Detailed information for carers.
Carers UK
Tel: 0808 808 7777
Website: www.carersuk.org
Carers Northern Ireland
Tel: 028 9043 9843.
Website: www.carersni.org
Carers Scotland
Tel: 0141 445 3070
Website: www.carersscotland.org
Carers Wales
Tel: 029 2081 1370
Website: www.carerswales.org
Offers information and support for carers, including information about
finances and benefits.
Carers Trust
Tel: 0844 800 4361
Website: www.carers.org
Crossroads Care and The Princess Royal Trust for Carers have merged to
form the Carers Trust. They can give you details of your nearest
carers’ centre. They also provide respite care (England and Wales),
information, advice, training, education and job opportunities.
Crossroads Caring for Carers (Northern Ireland)
Tel: 028 9181 4455
Website: www.crossroadscare.co.uk
Crossroads Caring Scotland
Tel: 0141 226 3793
Website: www.crossroads-scotland.co.uk
Provide respite care.
Other useful organisations
Age UK
(formerly Age Concern and Help the Aged)
Age UK Advice: 0800 169 65 65
Website: www.ageuk.org.uk
Age Cymru: 0800 169 65 65, Website: www.agecymru.org.uk
Age NI: 0808 808 7575
Website: www.ageni.org.uk
Age Scotland: 0845 125 9732 Website: www.agescotland.org.uk
Provide useful advice for older people including benefits and advice
for carers.
Benefit Enquiry Line (BEL)
(England, Scotland and Wales)
Tel: 0800 88 22 00
Northern Ireland:
Tel: 0800 220 674
Provide information and advice on benefits, personal benefit
calculations and phone completion of Attendance Allowance, Disability
Living Allowance and Carer's Allowance claim forms.
British Bankers’ Association
Website: www.bba.org.uk
The UK banking and financial services trade association. Publishes a
range of leaflets.
Contact a Family
Tel: 0808 808 3555
Website: www.cafamily.org.uk
Support for parents of all disabled children.
Citizens’ Advice Bureau (CAB)
Website: www.adviceguide.org.uk.
See their website to find details of your local bureau or look in your
local telephone directory.
Website: www.citizensadvice.org.uk
Offers advice and information on a range of issues including debt,
benefits, legal issues and housing.
Counsel and Care
Tel: 0845 300 7585
Website: www.counselandcare.org.uk
Advice and information for older people, their relatives and carers.
Disability Alliance
Tel:020 7247 8776
Website: www.disabilityalliance.org
Provides information about benefits, tax credits and social care
charges. Publishes the Disability Rights Handbook.
Headway – the Brain Injury Association
Tel: 0808 800 2244
Website: www.headway.org.uk
Serves people with acquired brain injury, their family and carers
through a UK network of Headway House centres and local groups.
National Centre for Independent Living
Advice line: 0845 026 4748
Website: www.ncil.org.uk
Information and advice on independent living and direct payments for
disabled people.
Legal matters
Office of the Public Guardian
(England and Wales)
Tel: 0845 330 2900
Website: www.publicguardian.gov.uk
Scotland
Tel: 01324 678300.
Website: www.public-guardian-scotland.gov.uk
Offers support for those who lack capacity or would like to plan for
their future. Has information on becoming a Power of Attorney.
Office for Care and Protection (Northern Ireland)
Tel: (028) 9072 4733
Website: www.courtsni.gov.uk
Offers support for those who lack capacity or would like to plan for
their future.
Court of protection
Tel: 0300 456 4600
Offers information on becoming a deputy.
Government website (England and Wales)
Website: www.direct.gov.uk
Offers information on Power of Attorney and becoming a deputy through
the court of protection.
Disclaimer: The Stroke Association provides the details of other
organisations for information only. Inclusion in this factsheet does
not constitute a recommendation or endorsement.
Produced by the Stroke Association’s Information Service. For sources
used,
visit stroke.org.uk
© Stroke Association
Factsheet 04, version 01 published November 2012 (next review due
September 2014).

Stroke Association is registered as a charity in England and Wales (No
211015) and in Scotland (SC037789). Also registered in Northern
Ireland (XT33805) Isle of Man (No 945) and Jersey (NPO 369).
21
Stroke Association November 2012
Stroke Helpline 0303 30 33 100 website www.stroke.org.uk