Caring for someone with motor neurone disease (MND) can be a complex and emotional experience – but there are ways that you can look after yourself, and your loved ones, when dealing with such a challenging situation.
At the time of diagnosis, both the person with MND and their family and friends may be feeling many conflicting emotions. Suddenly the world they knew and the future they had envisaged is different.
Time is needed to take in what is happening and to work through the many emotions you and your loved one may be feeling.
Over time, as your loved one’s needs increase as a result of the progression of MND, so does the work load you carry. Being a carer, a voice, an advocate as well as a partner/daughter/son is an important role.
Becoming a carer can result in:
Many people don’t see themselves as being a carer – instead, they see themselves as wives, husbands, partners, friends, sons and daughters. Simply becoming known as a carer can be a big transition in itself.
Providing care is often a very steep learning curve as you learn about MND, clinics, equipment, service providers, My Aged Care, the NDIS and everything else that comes with progression of the disease.
As a carer, you may experience a range of emotions throughout the course of the disease. Remember: each person is unique and reacts emotionally in their own way. It is important to acknowledge that the overwhelming nature of caring for someone with MND can put the carer under great strain.
It is also important to understand:
Much research has been done to look at what it feels like providing care as the primary carer. It has been well established that caring has an adverse effect on a carer’s physical, social, emotional and financial wellbeing. Being a carer is a marathon of sorts, not a sprint, so it is important that you are well supported so that you can take care of your own health.
Some carers have strong skills, or past experience, in dealing with stress and related impacts from providing care. Others are at the start of their journey and still learning what works best for them.
There are many things you can do, however, to help maintain your mental health and wellbeing, ranging from finding ways to build in relaxation activities into your schedule and talking with health professionals, to getting help with basic things around the house and asking others to help
A good first step is becoming more informed. Some great sources of information and advice can help with your wellbeing, including:
Services and support in your local community can be enormously beneficial for reducing stress and the physical burden of the caring role. Try and:
Many good quality smartphone apps, ones that are based on evidence of what helps reduce stress, are available for free or at low cost, including:
Physical movement and activities are a great way to relieve stress and manage difficult emotions. Make sure that you:
Sometimes, providing care can feel like it’s becoming too much. And often it is not easy to recognise depression from sadness.
If you are experiencing thoughts and feelings that are distressing and intense, there are great sources of confidential help for understanding what’s going on, and feeling more in control:
Research also finds that staying connected with others can play a big and positive role in reducing stress. If you can, try to keep participating in social, community or work activities that you enjoy such as local sporting clubs, libraries, book and movie groups.
If you are working, talk to your employer about flexible work and other options to help you maintain your employment whilst also supporting your loved one. Also talk with service providers and others involved in caring for your loved one to develop a schedule that will support your working day.
Finding ways to keep learning and developing new skills can help, too. Online courses or virtual exhibitions and tours that you and your loved one can enjoy together might be a useful way to learn new things at a time that suits you. There are many great online options, including:
Sometimes, you may feel that your loved one may be expecting too much from you. It is important to discuss how you feel and find ways to alleviate the pressure on you. If you’re talking with your partner about difficult things, try to:
If you and your partner feel comfortable enough to approach a professional, you may also feel that it helps to talk things through with your partner as part of a relationship counselling session.
MND associations provide direct services and support to people living with MND, their family, friends and service providers in all states and territories across Australia.
Calling the MND Info Line on 1800 777 175 (9am to 4.30pm Monday to Friday) will link you in to the services they provide.
Once you are enrolled with their service you will be assigned a MND advisor who can support you and your loved one by providing information, guidance and support. The knowledge and understanding of MND association staff is invaluable and valued by people across Australia.
Carers associations are also available in every state in Australia and can help carers with:
Carers Australia or call 1800 422 737 for your states' carers organisation
Carers Gateway (previously known as Commonwealth Respite and Carelink Centre) Call by phoning 1800 422 737 between 8am and 5pm. Each region in Australia has a Carer Gateway service provider. The Carer Gateway has staff that can talk through what support and services are available in the area you are calling from.
Services provided by Carer Gateway include:
Many different MND specific information events are held throughout the year in various locations around Australia. The events are organised by individual MND associations for people with MND, their family and friends. There is usually no charge to attend but it is important to register with the host association prior to the event.
Some events are presented face to face with an audience and others are virtual events. Some of the sessions are recorded and can be viewed after the event.
The website CarerHelp provides resources and information for people caring for a loved one at end of life.
Bereavement refers to time following the death of a person with whom we have had a relationship. Grief is how we react to the loss. Grief can be expressed very differently from person to person. For each person, grief and the bereavement experience is personal and unique. Most bereaved people, with the support of family, friends and their community, cope with this loss, however for around six percent of the bereaved their grief is chronic and disabling.
Following the death of your loved one, there may be a sense of abandonment, as friends and family begin to get on with their own lives. Many people involved in caring for the person with MND will no longer come to the house. The change makes it even more important to ask for help if you need it.
For those with extreme and disabling grief, it will impact their ability to cope day to day. In cases of disabling grief, it is important to seek help. Signs that you may need to seek help include:
Be kind to yourself when going through bereavement. You have been through a lot, and while it might feel difficult to ask for help, it is courageous. Talk confidentially with your GP, the palliative care service involved in caring for your loved one, or with a relative or friend that you trust. There is support available to you which can help you move forward, feel better and more able to cope over time.
Your MND advisor is available to talk with you and they can provide information about where you can seek assistance if you wish to seek some more formal support such as bereavement counselling.