Motor Neurone care: How do I care for a loved one with Motor Neurone Disease?

If your loved one or relative requires motor neurone care, it’s important to start collecting information and resources to help understand the condition. Unfortunately, there’s no cure for the disease. However, some medications can help to limit the effects of the condition. The better informed you are, the better use you’ll be able to make of the resources available to you.

Help to prepare a motor neurone care plan

No two people experience the same symptoms with MND, so care plans must be individually tailored, taking into account the needs and wishes of your loved one. Over time, your relative will meet with a range of medical professionals, so a care plan ensures that everyone understands what is required of them.

Bear in mind that the ongoing degenerative effects of the disease mean a regular review of the care plan is necessary. As your loved one experiences further symptoms, their needs will gradually increase, and this should always be reflected in their care plan.

Coping with fatigue

One of the earliest symptoms of MND is extreme fatigue. Your loved one is likely to become exhausted very quickly. It’s essential to recognise the signs and encourage them to rest as much as possible. When planning outings and activities, be sure to factor in plenty of relaxation time and don’t try to encourage your loved one to do more than they feel capable of doing.

Colin and Dulcie’s story

Dulcie is 102-years-old and lives with her son Colin, his wife Mary, and her Carer Sarah. She has dementia and has had full-time live-in care for over two years.

We talk to the family about the challenges of finding the right care solution for a fiercely independent woman – and how the positive benefits of live-in care with Sarah has transformed all of their lives.

Encouraging movement

Unused muscles can become weak, so it’s essential to encourage your loved one to keep moving as much as possible. Even a short stroll will prove to be beneficial, so try to get out in the fresh air whenever possible. Some MND patients find that massage helps to keep muscles in top condition, while others choose acupressure and even Reiki. Explore the various options available and keep an eye out for gentle, seated exercise classes too, such as Tai Chi for seniors, which helps to create a sense of wellbeing.

Keep your loved one warm

Many people diagnosed with MND will have an increased tendency to feel cold. Even on a warm, sunny day, your loved one may still feel cold so keep this in mind, particularly on outings. Clothing made from cotton or wool help to retain body heat close to the skin but you may also need extra coats and blankets too.

Issues with eating and drinking

Over time, Motor Neurone Disease affects the throat, making it difficult to swallow and speak. Experienced elderly care workers understand the nutritional needs of older people. Ask your loved one’s medical team for advice about eating and drinking because certain head positions can pose the risk of choking.

Your loved one may need their food to be blended so that they don’t have to try to chew it. Take the time to include flavours that you know they love. A caregiver experienced in dementia care has a good understanding as to the need to keep mealtimes slow, as well as the benefits of providing several, smaller meals throughout the day, rather than three larger meals.

Difficulty sleeping

Issues with sleeping affect the majority of MND patients at some point. Difficulty swallowing and breathing, combined with muscle cramps, can make it hard to relax into sleep. Lack of sleep inevitably leads to exhaustion the following day, as well as headaches and feelings of restlessness.

You may experience late nights looking after a loved one or relative, and the sleepless nights may eventually have an impact on your own health. It might be worth considering private care options so that you get the chance to ensure you are in good health.

If sleep is becoming a real issue, a profiling bed, which raises the head higher than the feet, can make it easier for your loved one to breathe and CPAP machines will assist with breathing while your relative is sleeping.