Sleeping, dignity and timely support

Sleeping difficulties

The Problem

People with MND may experience problems with sleep, which can result in fatigue during the day, loss of concentration and reduced quality of life.

Sleeping difficulties may be caused by a variety of reasons:

• discomfort because of immobility
• pain due to stiffness of joints or muscles
• excessive saliva or dry mouth
• breathing problems
• emotional distress and anxiety.

Support you can give

Different sleep strategies work for different people. You could advise the following:

• if possible, try not to remain in the same position in bed for too long
• satin or silk sheets may help moving about in bed
• it may be possible to get a profiling bed which can be adjusted to a variety of positions
• side rails and extra pillows can give added support
• a segmented overlay mattress and specialised pillows distribute body pressure more evenly
• breathing may be helped by being slightly more upright by using extra pillows
• before going to bed, avoid over-exertion, caffeinated drinks, smoking and heavy meals
• establish a bedtime routine
• make sure the bedroom is quiet, cool, dark and comfortable and light bedclothes allow easier movement in bed
• people with swallowing difficulties may benefit from sleeping with their head elevated to prevent secretions from pooling in the upper airway.

Be aware people with MND may have breathing problems that disturb their sleep. Any changes in sleeping patterns should be reported to the person’s healthcare team, who can refer them for respiratory assessment.

Dignity

What do you see nurse, what do you see? What are you thinking when you look at me? A crabbit old woman, not very wise, Uncertain of habit with far away eyes, Who dribbles her food and makes no reply When you say in a loud voice, “I do wish you’d try.”

Phyllis McCormack

People with MND have the right to be treated as individuals, with dignity and respect:

• being offered a personal care plan to specify what care and support they need
• being offered the opportunity to develop an Advance Care Plan to ensure their wishes are met, and appropriate end-of-life care is provided in their chosen setting
• getting support to help them make the right choices to meet their needs when using personalised care options
• prompt access to appropriate communication support and aids
• opportunities to be involved in research if they so wish.

Dignified care

Dignified care needs to be person-centred, and not just focused on tasks and processes. An important element of care is to be aware of, and sensitive to, the features of a person’s life including their values, feelings and beliefs. Being in need of support both physically and emotionally can make anyone feel vulnerable. Some groups of people who are especially vulnerable and at risk of the infringements of their dignity are those that:

• are acutely ill and physically compromised
• cannot tend to their own needs
• are, or feel, unable to speak out for themselves
• lack the capacity to make decisions
• are cognitively impaired.

Privacy

It is important that privacy is respected in all care settings so that people can maintain their dignity. Privacy is very important during personal care but also with regard to people’s personal space.

Timely support

One week waiting for an assessment or a piece of equipment is like a year in most people’s lives, because they are an everyday essential to help us live as normal a life as possible and die with dignity

– Liam Dwyer, who is living with MND

People with MND have the right to maximise their quality of life.

This means timely and appropriate access to:

• equipment
• home adaptations
• wheelchairs and suitable housing
• support and benefits.

A person with MND can access a number of services and care support within their local authority. This does vary in quality and what is available depending on their location. However, the person has a right to a needs assessment if they appear to require care or support to maintain daily life. Their wishes must be taken into consideration when exploring options to achieve day-to-day goals. Carers should also be offered an assessment by the local authority.

Initially an assessment of their needs will be undertaken and is usually conducted by an appropriately qualified person eg. a social worker. This assessment will highlight any services they can receive and produce an agreed care and support plan. This may include care in the home, or referral to other local support services such as: relevant health professionals, relevant social care professionals, care services and agencies, community palliative care, day therapy units (often linked to hospices) counselling, respite services, financial and benefits advice, useful local or national charities.

Finance

Being diagnosed with a debilitating disease is scary enough without having to worry about the financial impact. As MND progresses, people will need to make adjustments to their life and their home, with often costly effects.

Be sure to talk to the person and their loved ones about their options. Explain that there is help available and that they could visit the MND Association for more details. Benefits and entitlement information is also available.