Motor Neurone Disease (MND)

Personal care and care support for MND

Changing levels of mobility and independence meant many people we talked to needed help with personal care, including washing, dressing, and using the toilet. The very personal nature of these tasks made this a sensitive area. People of course wanted to preserve their dignity as far as possible, whilst at the same time accepting practical help. Sometimes it was only when a specific problem or event occurred that people realised a point had been reached when changes needed to be made.

A first step for many people was to make changes to their bathroom and install equipment, especially hand rails, toilet risers, bath/shower seats and hoists. (See also 'Aids, equipment and adaptations'). Some decided to move their bathroom downstairs to make it more accessible, and some chose to have a wet room installed so they could shower easily. Grants may be available to support these adaptations, but sometimes people felt this took too long to arrange and paid for it themselves. (See also 'Finances and benefits'). 

People's views differed on how far to adapt their bathrooms. Some wanted a complete conversion to make everything as convenient as possible. Others wanted to keep the bathroom looking relatively normal, both for their own sakes and other family members. Bathroom equipment was sometimes seen as an intrusion and a reminder of disability. One woman said it 'freaked me for days' when the occupational therapist suggested changing the bathroom. Another said, 

'The bathroom was hard because I had two teenage children in the house who bring friends round, and I didn't want a bathroom that was so clinically disabled. So the toilet was raised on a plinth rather than having the toilet top and arms -more cosmetic, really. Just trying to make it a family bathroom and not just my bathroom.' 

The husband of another woman regretted having the bathroom completely revamped because the bath was uncomfortable and his wife only got a couple of months' use out of it. Occasionally people found the equipment provided was not very well suited to their needs. 

Several people talked about having to "swallow your pride" in accepting personal care. One man commented, “It's very undignified, but you swallow your dignity and you get on with it. If you're going to be dignified, you're not going to get very far.” Being helped with going to the toilet was especially hard to accept, so many people recommended a Clos-o-Mat toilet which has a washing and drying function.

As these men suggest, people face additional problems going to the toilet when they are away from home. MND does not normally affect people's ability to control their bladder or bowel function, but loss of mobility can make it hard to get to the toilet quickly enough. One woman explained how during a hospital stay staff failed to respond to her request to use the toilet.

One couple explained that when they were travelling they made sure they had plenty of toilet stops before it became urgent. Like many others, they stressed the importance of improvising their own solutions. Another woman had decided to have a permanent catheter, which she felt had given her more freedom as well as dignity. 

Individuals living with MND and their families faced difficult choices about who would provide personal care. Some people were adamant that they did not want paid carers coming in, because they would find this intrusive. Several family members said they wanted to do as much as possible for as long as possible, but recognised they might have to accept help at some stage. 

Some decided to limit paid help to tasks such as cleaning or shopping, freeing up time for family members to provide intimate care. A few women thought it was hard for male partners to take on tasks such as hair-washing and dressing, although it could also be an opportunity for greater closeness.

One man said the bathroom was where he and his wife were at their closest' “I'm in the bath and she's sat on the loo seat and we do our heart-to-hearts in there when we discuss things.” 

However, accepting personal care from anyone, however close, was often hard. Some people were uncomfortable with the idea of their relatives (especially their partners) becoming their carers. (See also 'Relationships and sex'). One man said the last thing he wanted was for his children to feel responsible for looking after him when they already had busy lives and their own children to look after. Some people actively preferred having professional carers and felt it helped them preserve normality in their personal relationships. 

For people who did not have a partner or other adult family member living with them, professional paid carers could be essential.

Many people talked about the difficulties of getting a satisfactory care package organised, whether they were arranging it themselves using the Direct Payment system, or through social services or the NHS. A particular problem was lack of continuity. Having lots of different people coming in meant it was hard to build up a trusting relationship, and it was frustrating having to explain each time what was needed. 

The MND Association website provides the following information sheets, 10B: Direct payments and personalisation and 10C: Disabled facilities grants.

Sometimes arrangements fell through at short notice. Those who chose to use the Direct Payment system to employ their own carers could sometimes get a reliable team in place, but it took a lot of organisation and paperwork. The suitability and training of staff employed was also an issue. People recognised that the work is often poorly paid, but felt agencies needed to do more to ensure care staff would cope with the demands of the job. Also many social care staff are not trained in lifting or allowed to help lift, so family members still had to do some of the heavy work. 

The MND Association website provides a range of helpful information resources, including their main guide ‘Living with motor neurone disease’ and resources for carers, such as their guide ‘Caring and MND: support for you’. They also offer a variety of information sheets on specific subjects, including symptom management and daily living needs.

Last reviewed August 2017.
Last updated August 2017.


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