Caring for a Loved One with Motor Neurone Disease: Tips for Family Caregivers

Caring for someone with motor neurone disease (MND) can feel overwhelming, especially when a loved one is first diagnosed. This progressive condition affects the nervous system, leading to muscle weakness, and ultimately, the need for around-the-clock care. Families often wonder what lies ahead and how they can best support their loved one as their health declines.

We’ll walk you through the key things you need to know about motor neurone disease care, the support available, and how to make the journey as comfortable as possible.

What is Motor Neurone Disease?

Motor neurone disease (MND) is a condition in which the nerves in the brain and spinal cord, known as motor neurons, become increasingly damaged. These neurons control muscles responsible for movements like gripping, walking, speaking, swallowing, and even breathing. Over time, MND causes these neurons to die, leading to muscle weakness and wasting. People also lose their ability to move, speak, and breathe as the disease progresses.

Motor neurone disease comes in different forms, with the most common being amyotrophic lateral sclerosis (ALS). While MND affects around 2 in 100,000 people annually, its impact is profound on both the person diagnosed and their family members. Though the condition usually begins in people in their 60s or 70s, it can affect adults of all ages. In some cases, MND is linked to genetic mutations, and having a close relative with the disease may increase your risk.

What are the symptoms of Motor Neurone Disease?

MND symptoms can be subtle at first, gradually becoming more noticeable as the disease progresses. While the early stage might seem manageable, things will change over time.

Early symptoms include:

• Weakness in the ankle or leg: This symptom can lead to difficulties walking or climbing stairs, and the person may trip more often.
• Slurred speech: Over time, this can progress to problems with swallowing certain foods.
• Weak grip: Your loved one may struggle to hold on to objects or open jars.
• Muscle cramps and twitching: These can affect various parts of the body.
• Weight loss: Muscle wasting can cause significant weight loss, even if appetite remains unchanged.
• Difficulty managing emotions: Laughing or crying at inappropriate times is common.

As the disease advances to the middle stage, these symptoms will become more severe:

• Muscle shrinkage: Loss of muscle mass becomes more visible.
• Muscle spasms and joint pain: Your loved one may experience involuntary spasms and discomfort in their joints.
• Drooling and difficulty swallowing: As muscles weaken, swallowing becomes harder, leading to drooling.
• Personality changes: Cognitive symptoms, such as memory problems and difficulty with language, may also appear.
• Breathing problems: Breathing becomes increasingly laboured as the muscles controlling the lungs weaken.

In the final stages, complete paralysis is common, and your loved one may need help with all daily activities. Respiratory support might be necessary as breathing becomes very difficult.

How can I support someone with Motor Neurone Disease?

Supporting someone with MND can be challenging, but with the right mindset and resources, you can make a significant difference in their life. Here are some ways you can offer your help:

1. Show Empathy and Understanding

Perhaps most important of all, be patient and empathetic. Your loved one might take more time to get dressed or walk around. Maintain as much of their dignity as possible, without highlighting their struggles.

2. Assist with Daily Activities

As the disease progresses, everyday tasks will take increasing effort. You’ll probably find yourself helping them with washing, dressing, toileting and other daily living activities. If your loved one is struggling with muscle weakness, you may need to assist with transfers, using mobility aids such as hoists or wheelchairs. Encourage them to use these aids early, to save energy and to avoid being hurt.

3. Encourage Mental Engagement

Keeping the mind active is essential for someone living with MND. You could play board games, help them with puzzles, or watch their favourite TV shows together. These activities not only provide mental stimulation but also offer emotional support during difficult times.

4. Help with Meal Preparation

As muscle cramps and difficulty swallowing become more common, you may need to prepare meals differently. Blending food or choosing easy-to-swallow options can help ensure your loved one continues to enjoy mealtimes. Make eating a pleasurable experience by incorporating their favourite flavours and serving smaller, more frequent meals throughout the day.

5. Manage Fatigue

Muscle weakness and fatigue are common with MND. Help your loved one save energy by encouraging them to pace themselves. They can sit while doing tasks, take frequent breaks, and focus on essential activities. Plan daily routines around their energy levels to avoid burnout and ensure they can do what matters most.

6. Provide Emotional Support

Motor neurone disease hits hard at the person’s emotional life too. People with MND may struggle with anxiety, depression and hopelessness as they lose their ability to care for themselves or support their family.  To support your loved one emotionally, be there to listen and offer reassurance. You can also connect them with local support groups, like the Motor Neurone Disease Association. These groups provide a space to meet others who understand what they’re going through.

7. Seek Professional Care

While it’s important for family members to be involved in the caring role, professional carers can provide much-needed support. Home care services can help with personal care and taking medications, and can do shopping and cooking, as well as cleaning, and other domestic duties that are necessary as your relative’s condition progresses.

If full-time care is required, live-in carers can be on duty 24/7 to meet your loved one’s every need. Multidisciplinary teams of local healthcare professionals can also provide ongoing support to provide a care regime that is adapted to the needs of the person being cared for.

Adapting to life with Motor Neurone Disease

Adjusting to life with MND is tough, but resources are available to help your loved one live as independently as possible.

• Use Mobility Aids: As MND progresses, wheelchairs, walkers, and lifts can help maintain independence and make daily tasks easier.
• Consider Respiratory Support: Breathing difficulties are a common symptom of MND, especially in the later stages of the disease. Respiratory support such as non-invasive ventilation can help improve breathing and reduce discomfort. Working with a multidisciplinary team will ensure that your loved one receives the right equipment and support for their needs.
• Handle Cognitive and Emotional Changes: MND can cause changes in personality and behaviour. If this happens, seek support from specialists for coping strategies and emotional support.
• Adapt the Home Environment: If your loved one is living at home, the environment can be modified to promote comfort and safety as their condition progresses. Grab bars can be added to the bathroom, doorways widened to accommodate a wheelchair, or a stairlift installed. Home modifications can make a big difference to your loved one’s quality of life.

Conclusion

Caring for someone with MND won’t always be easy, but it will always be impactful. Your presence, understanding and willingness to adapt to their changing needs will help to make them feel good about themselves. You won’t be alone – support from the Motor Neurone Disease Association and local healthcare professionals can be invaluable in helping to organise matters and provide practical advice. Planning for the future and ensuring your loved one’s wishes are honoured when they can’t speak for themselves can help to make them and you feel prepared.

Should you feel you need some extra support, Tiggo Care offers a range of services to help your loved one stay as comfortable and independent as possible. Our home care visits offer routine daily support, while live-in care can provide 24-hour care for people with more complex needs.

If your carer needs a rest from time to time, we can also provide respite care or support in the palliative care of someone with MND in their final days or weeks. Give us a call today to learn more about how Tiggo Care can support you and your loved one by living with MND.