Support for carers
If your relative or friend has been diagnosed with MND or Kennedy’s disease, supporting them may feel part of your relationship. However, health and social care services describe someone who provides unpaid care support as a 'carer'. This term can help you identify and access services, which offer direct support for you, as well as the person who has been diagnosed. Select from the following to find out more.
“I think that sometimes people take on a caring role, but don’t realise they are carers and don’t get the help that is available to them.” Carer, supporting a person with MND
For details about managing daily challenges, see our living with MND pages. These pages may also be useful for people with or affected by Kennedy's disease.
Support for you as a carer is just as important as support for the person who has been diagnosed. If you wish to continue in the caring role, maintaining your wellbeing can help you manage the challenges ahead.
“Accept help when it’s offered. I am getting better at this. I want to be able to do it all by myself, but I just can’t. I won’t be able to survive if I do.” Carer, supporting a person with MND
MND is unpredictable and symptoms can progress quickly. Accepting that change will happen can help everyone involved to plan ahead and get the right support at the right time.
If you are unable to continue providing support for any reason, then understanding how to access external support for the person with MND is crucial. As their symptoms progress, they will need increasing levels of help with daily routines and personal care.
No individual with MND will have exactly the same symptoms in the same order as someone else. The rate at which the disease progresses can also vary widely, but is often rapid. This means planning ahead is important, as it can feel as though MND is always one step ahead.
For example, if you wait until point of need to source equipment, it may no longer be suitable for use by the time it arrives. This can be frustrating and costly. However, getting needs assessed for the person with MND (and yourself) is important before making any purchases. This can help you work out appropriate services, support and aids to meet current and likely future needs. Some equipment may also be free or available on loan.
See our information resources for our full information provision, including publications for carers and people with MND. This includes our summary if you are new to caring, Caring and MND: quick guide (also available in audio format) and our comprehensive guide to help carers look after their own wellbeing, Caring and MND: support for you.
Find out more about Kennedy’s disease in information sheet 2B – Kennedy’s disease.
When facing the challenges of supporting someone who is ill, taking care of yourself can often take second place. It may seem impossible to think about eating and sleeping well, let alone staying fit, taking breaks or following a hobby or interest.
“Advice about looking after yourself, taking breaks and so on, is the most difficult to follow. It’s perfectly sound – we understand the good sense employed – just impossible to accomplish.” Carer, supporting a person with MND
However, care needs can increase rapidly with MND, and may increase over time with Kennedy’s disease. Your own physical and emotional health can be affected. If left unchecked, there may come a point where you are no longer able to continue caring, even if you wish to do so.
As difficult as it may be, there may come a time when you need help. In the meantime, taking a practical approach can be useful. For example, tackle the most important things first and leave non-essential tasks – adapting your approach to daily routines can help you avoid feeling overwhelmed.
You deserve support too.
You have the right to ask for a carer’s assessment whether or not you live with the person you support. This applies whether you provide full-time or part-time care, or combine care with paid work. An assessment can help work out the support you may need as a carer.
“I know I won’t be able to do it all on my own soon…I don’t know how to bridge the reality of his needs with my capability.” Carer, supporting a person with MND
In brief, you have the right to:
- have your views taken into consideration by the local social services/adult care services when they are assessing the needs of the person you support
- an assessment of your needs as a carer
- have your interests, work, family life and life ‘outside of caring’ taken into account
- take a break from caring
- benefits and financial support, where applicable
- request flexible working from your employer.
Contact our helpline MND Connect if you have any specific questions.
A carer’s assessment enables you to tell adult social care services how they can make caring easier for you. You should be offered an assessment as soon as you have been identified as a carer. If not, ask your local authority for an appointment or, in Northern Ireland, your local health and social care trust.
The assessment does not judge your capability as a carer, but allows you to discuss whether you can or wish to continue caring. If you are likely to remain in the caring role, the assessment then looks at the help you may need. Try to give lots of detail to ensure any resulting support plan will meet your needs.
“Contacting adult social care services to ask for a carer’s assessment seems a very useful thing to do.” Carer, supporting a person with MND
Detailed guidance is given in Section 4: Carer’s assessment of our comprehensive guide for carers: Caring and MND: support for you. This includes information about the questions you’re likely to be asked at an assessment.
See also information sheet 10B - What is social care? for details about how someone with MND or Kennedy's disease can get their needs assessed.
Our pocket sized booklet, What you should expect from your care, can help people with MND gain better outcomes for treatment and care, by supporting discussions at appointments. It may also be useful during a carer’s assessment, as it can help show the range of care someone with MND is likely to need, which will impact on you as their carer. The content of the booklet is based on the main points from the NICE guideline on motor neurone disease. NICE guidelines are recommendations from the National Institute of Health and Care Excellence, to help professionals support conditions, such as MND. The guideline on MND recognises that carers need help too, with a clear recommendation that professionals let you know about your right to a carer’s assessment.
Our guides and other resources can be ordered in print from our helpline, MND Connect. You can also contact our helpline if you have any specific questions.
Your circumstances, income and the number of hours you provide care may all affect how you qualify for support. Your carer’s assessment will help work out if you qualify (known as having ‘eligible needs’).
As a carer, you may be able to get help with:
- household tasks or gardening
- a mobile phone or computer, where it is not possible to access computer services elsewhere
- transport costs, such as taxi fares, driving lessons, or car repairs where transport is crucial
- help to improve your wellbeing, such as membership to a gym or hobby club.
“I needed someone in authority to tell me that after seven and a half years of caring and not sleeping properly, it was okay to take a break.” Carer, supporting a person with MND
The person you support can also have a needs assessment - see information sheet 10B - What is social care? This can lead to assistance that may also help you as a carer, such as:
- respite or replacement care so you can take a break
- a care worker to help provide personal care at home
- laundry services or meals delivered at home
- changes to the home to make it more suitable, or equipment such as a hoist or grab rail
- assistance with travel to appointments or a day centre.
If you or the person with MND or Kennedy’s disease qualify for support, you will each receive an individual support plan with the agreed services outlined, and the cost. A financial assessment will work out how much you need to pay towards the cost and how much will be paid by your local authority – or health and social care trust in Northern Ireland.
Services can be arranged for you or you can decide to accept direct payments, where you select and arrange services of your own choosing. If you receive direct payments, you are responsible for this funding. To find out more, see Information sheet 10B - What is social care?
See our useful organisations and internet sites page for examples of relevant services and providers.
“My Association visitor has been really, really helpful…and has been very good at keeping one eye on the future.” Carer, supporting a person with MND
We offer a wide range of support for unpaid or family carers of people with MND or Kennedy’s disease. This includes publications and other resources, access to all our services including the MND Connect helpline and grants for carers.
See our useful organisations and internet sites page for examples of other services and providers.
When supporting someone with a serious illness, you may worry about whether you can maintain employment at the same time. This can also raise concerns about finance – especially if the person with MND or Kennedy’s disease decides to leave work. It can also be difficult to explain what is happening to colleagues.
“Dealing with work colleagues who don’t have much idea what caring is all about can be tricky, as you often don’t have the energy to talk about things.” Carer, supporting a person with MND
As a carer, you may qualify for Carer’s Allowance if you provide 35 hours of care or more a week, for a person who receives Attendance Allowance, Disability Living Allowance or Personal Independence Payment. There may be other things that determine whether you qualify. Other benefits may also be available, depending on your situation.
We also provide Information sheet 10A: Benefits and entitlements, which introduces all of the main benefits that both you and the person you support may be able to claim.
10G: Support for families with children gives details of benefits and financial support that can help if there are children or young people in your family.
“Support is out there, but you have to know the system and fight for it.” Carer, supporting a person with MND
If you have never claimed benefits before, it may feel daunting at first. However, it is your right to claim. If you qualify, the financial support may bring you peace of mind.
If you are a carer, or living with MND or Kennedy’s disease, and you need guidance about benefits, contact our Benefits Advice Service. Our team of qualified advisers can provide support by phone and e-mail in England, Wales and Northern Ireland. Web chat is also available in England and Wales.
The service can help you identify available benefits and the best way of claiming them. You can also get help for complex benefits issues and appeals. A home visit to help with the completion of forms may be possible, depending on your circumstances and where you live.
We also offer grants for carers at the MND Association, which can help towards taking a break from the caring role.
Providing support to someone with a challenging disease can be an intense experience. It is usually emotional and tiring, and can feel very draining. However, many carers tell us it can be rewarding and an opportunity to spend time with the person you are caring for. It also provides a sense of purpose and routine that can be hard to let go.
You may remain involved throughout the course of the disease. If the person you support accepts external help from a care worker, it can reduce some of the demand on your time and enable other things to happen. With MND, the care may become complex or require medical supervision – the person you support may even need to spend time in a nursing home. Yet, in these instances you can still be included in their care, if you wish.
However, when the person dies, the caring role stops abruptly. Not only are you dealing with bereavement, but there may be a loss of purpose too. Your life may feel very different to the life you lived as a carer, or prior to becoming a carer. It can take time to adjust again.
It is at this point that the emotional and physical challenges of the caring role may catch up with you. A check up with your GP is recommended, even if you feel you're coping well. Your doctor can monitor any sense of being ‘run down’ and advise if grief overwhelms you for a long period of time, or makes it difficult to manage daily life.
You may find it helpful to read Section 10: Beyond the caring role in our guide Caring and MND: support for you. This offers support about handing over care, dealing with bereavement and adjusting to life beyond the caring role. We also provide Finding your way with bereavement, which is designed to help you, your family and friends find emotional support. It also includes information on anticipatory grief, a practical overview of what to do when someone dies, and how to support children and young people who may also be grieving.