Supporting Someone With MND: A Guide for Support Workers

Supporting someone with MND: a guide for support workers

If you are about to start supporting somebody with motor neurone disease, there are a handful of things that will make you considerably better at it than most people, and they are not obvious.

Sensation is intact. MND damages the nerves that make muscles move, not the ones that carry feeling. The person feels the crease in the sheet, the cold draught, the itch they cannot reach, the position that was comfortable twenty minutes ago and is not now. Everything you learned about pressure care and positioning applies, and so does the fact that discomfort you cannot see is being experienced in full.

Losing speech is not losing intelligence. Speech change in MND is a motor problem. Language and comprehension are normally intact, and the person follows every word said in the room — including the words said as though they were not in it. This is the complaint people with MND make most often about the people paid to care for them.

The condition moves. What worked last month may not work this month. The support plan is a snapshot, not a description, and your observations are how it gets updated.

And speed is part of the job. In most disability support, noticing something and raising it next week is fine. In MND, a week is a meaningful fraction of what the person has left, and some things — chest infections, weight loss, a mask that is not working — need to be escalated the same day.

This guide covers the practical detail. It does not replace your employer’s policies, the person’s support plan, their mealtime management plan, or any clinical instruction, all of which take priority and should be followed exactly.

The basics of the condition, briefly

MND is the progressive death of the nerve cells that carry signals from the brain to the muscles. Muscles that receive no signal waste and weaken. It affects movement, swallowing, speech and breathing, and respiratory weakness is the usual cause of death. Average survival is two to three years from diagnosis, with a wide spread — some people live much longer.

Around 2,752 Australians are living with it. Two are diagnosed each day and two die each day.

What is usually spared: sensation, continence of the bladder and bowel muscles themselves, and eye movement — which is why eye-gaze communication works.

What is sometimes affected and not often mentioned: thinking and behaviour. Over half of people with MND have some change, around 35 per cent mild, and up to 15 per cent develop frontotemporal dementia. Apathy, rigidity, irritability, impulsivity and loss of social filter are the usual forms. If the person you support seems unmotivated or unreasonable, consider that this may be the disease rather than the person. See cognitive and behaviour change in MND.

Emotional lability — uncontrolled laughing or crying that does not match how the person feels — is common and distressing, and it is not emotional collapse. Do not make a thing of it. Carry on, offer a tissue, give it a minute.

Communication

The part you will get wrong first and that matters most.

Give them time. Whether they are using a weak voice, a device, or eye gaze, it is slower than you are used to. Wait. Do not fill the silence, do not finish the sentence, do not guess at the end of the word. The urge to help by anticipating is the single most frustrating thing the person experiences, and it is nearly always well-intentioned.

Be honest when you have not understood. “I got the first bit — can you give me the last word again?” is far better than nodding. People can tell when you are pretending, and it teaches them not to bother.

Do not raise your voice. Hearing is unaffected. Volume signals that you think something is wrong with their mind.

Speak to them, not about them. Not to the family member in the room. Never over their head, as though they had left the room. Say their name, face them, address them.

Yes/no questions when energy is low, open questions when there is time. Reading the situation on this is a skill worth developing.

Learn their system. Agreed yes/no signals, the board, the device, where the banked messages are. Ask on your first shift, not when you need it.

If they use eye gaze, do not stand in front of the screen, and do not move the mount. Screen position is prescribed and somebody spent a long time getting it right.

Keep the low-tech backup within reach — the alphabet board, the whiteboard. Devices break and batteries die.

And learn partner-assisted scanning, which costs nothing: read out groups of letters or options and watch for the signal. It is the fallback that works when everything else fails.

For the full picture see communication and voice banking with MND.

Personal care and transfers

Explain before you touch, every time, even if you have done it a hundred times and even if they cannot answer. Being handled by somebody when you do not know what they are about to do is frightening.

Use the hoist if the plan says hoist. Every injury to a support worker in this condition comes from an improvised transfer, and every improvised transfer started as a reasonable shortcut. The plan exists for two people’s safety.

Two workers when the plan says two workers. No exceptions for a quick one.

Mind the head and neck. Neck weakness is common in MND, and an unsupported head during a transfer is both painful and frightening. Check head support positioning in the chair and in the hoist sling.

Be careful with limbs. Weak muscles do not protect joints. Shoulders in particular are vulnerable — never pull on an arm to move somebody, and support the limb rather than letting it hang.

Positioning and pressure care are clinical work. Sensation is intact, mobility is not, and the combination is high pressure-injury risk. Reposition on the schedule. Check heels, sacrum, elbows, ears and anywhere equipment contacts skin. Report any redness that does not fade.

Temperature. People who cannot move cannot adjust. Ask, and keep asking.

Take the time the task takes. Rushing personal care in MND produces discomfort, fear and injury. If the roster does not allow enough time, that is a rostering problem to raise, not a reason to go faster.

Eating, drinking and mealtimes

If there is a mealtime management plan, follow it exactly. No variations, no “just a sip of water,” no family member’s preferred method over the speech pathologist’s. Dysphagia support is a high intensity support and the risk is aspiration.

Positioning. Upright, well supported, chin slightly down rather than tipped back. Stay upright for 20 to 30 minutes afterwards.

Pace. Small mouthfuls, one at a time, confirm each has been swallowed before the next. Never rush and never load a second spoonful while the first is still in the mouth.

Thin fluids are usually harder than solids. Somebody who coughs on water and manages a sandwich is not being inconsistent. Follow the prescribed consistency.

Watch for a wet or gurgly voice after swallowing, coughing during or after meals, food catching, or meals taking much longer than usual. Report any of it.

Silent aspiration is real. No cough does not mean it is safe. A low-grade temperature, recurrent chest infections or new deterioration can be the only sign.

Fatigue matters. If a meal becomes exhausting, stop and report it rather than pushing through. Swallowing is generally safest earlier in the day, so the timing of a big meal matters.

Weight. If you are asked to weigh them, do it on the same scales at the same time of day, and record it. This is one of the most clinically useful things a support worker does — a documented weight trend changes decisions, including the timing of a feeding tube.

PEG feeding, where relevant, is a high intensity support with its own plan: feeds, flushes before and after, medication given in the prescribed form, site care, and watching for redness, leakage or pain. Do not improvise and do not crush anything without checking. See eating, swallowing and PEG feeding.

Breathing: the part to take most seriously

This is where a support worker makes the biggest difference.

Know whether they use non-invasive ventilation, when, what the settings are meant to be, and what the alarms mean. Learn the mask — how it fits, how to seat it, how to deal with a leak, how to clean it. Mask problems are the commonest reason people stop using the treatment that most extends their life.

Learn the suction equipment if it is in use, and keep it charged, assembled and within reach rather than in a cupboard.

Know the cough assist device if there is one, and know that it matters most during a chest infection.

Report immediately — the same day:

• New or worsening breathlessness, especially lying flat
• Waking with headaches, or new morning nausea
• Needing more pillows than before
• Fewer words per breath, a quieter voice, breathlessness while speaking or eating
• A weak or ineffective cough
• A wet, rattly sound in the chest or throat
• New fever, or any sign of a chest infection
• Confusion, agitation or unusual drowsiness
• Any increase in time spent on ventilation, or new difficulty tolerating it

Two specific things to know. First, a weak cough plus a new fever is an urgent combination in MND, not a wait-and-see one — chest infections escalate fast in somebody who cannot clear secretions. Second, oxygen is not the answer to breathlessness in MND unless it has been specifically prescribed. The problem is carbon dioxide not being cleared, and oxygen alone can make it worse. If paramedics or hospital staff are involved, the person may have a card or letter about this; make sure it goes with them. See breathing and MND.

And know the plan for a crisis. If there is an advance care directive, know what it says and where the copy is. Knowing in advance whether this person wants to go to hospital is part of your job.

Independence, dignity and the things that get taken away

Prompt rather than do. If they can do part of it, let them, even when it is slower. Doing something for somebody who could have done it themselves removes it permanently.

Ask before changing anything. How they like their coffee, where the remote sits, which side they sleep on, what order personal care happens in. These are the only decisions left in a life that is losing them steadily, and they matter out of all proportion.

Offer choices physically when speech is hard. Hold up two shirts rather than asking which shirt.

Knock. Close the door. Cover them up. Dignity in personal care is not a nicety.

Keep the call system in reach and test it. For somebody who cannot speak and cannot press a button, the call system has to be matched to whatever movement remains. If it is not working, that is urgent.

Do not make decisions on their behalf because it is quicker. As communication gets harder the temptation grows. Resist it.

And talk to them like an adult. About the football, the weather, your week, the news. People with advanced MND consistently say that what they miss most is ordinary conversation in which nobody is assessing them.

What to escalate, and how fast

Same day:

• Any breathing change, or the breathing signs listed above
• A weak cough with a new fever, or any suspected chest infection
• New or worsening swallowing difficulty, or coughing on food or fluids
• A fall, or a near miss on a transfer
• New redness over a pressure point
• A communication device not working
• A ventilation mask that cannot be made to fit or is not being tolerated
• New confusion, agitation or drowsiness
• Any pain not covered by the plan
• Weight loss you have noticed

Within the week, in writing:

• Function that has changed since the plan was written — a transfer that used to work and no longer does
• Equipment that no longer fits the person
• Anything the person has told you they want that is not in the plan
• Rostered time that is not enough for the tasks
• Your own training gap on a task you are being asked to do

Report rather than absorb. If you are being asked to do a high intensity task you have not been trained and signed off for — ventilation support, PEG feeding, suction, complex bowel care — say so in writing to your supervisor and do not do it. That is not being difficult. The skills descriptors exist because these tasks carry real risk, and a provider that leans on untrained workers is failing everybody including you.

Looking after yourself

MND support is hard in specific ways and it is worth knowing why rather than treating it as a personal failing.

You will support somebody who is dying, probably within a year or two of meeting them. You will watch a person lose speech, movement and independence on a timescale that does not allow anybody to adjust. You will work alongside a family who are exhausted and grieving and sometimes angry, and the anger will occasionally land on you. And your best work — the infection you caught early, the position you got right, the hour of conversation on a bad afternoon — will be invisible to everyone, including your employer.

What helps:

Debrief. A supervisor, the team meeting, a colleague after a hard shift. Taking it home and sitting with it alone is what ends people in this work.

Know the mechanism. Workers who understand that apathy is neurological, that emotional lability is not collapse, and that irritability may be frontal lobe change rather than a judgment on them, last far longer than those who take it personally.

Hold your own boundaries. Warmth is not unlimited availability.

Ask for the training in writing. MND support needs specific skills, and if your employer has not provided them, asking on the record is reasonable and creates a trail.

Use the support that exists. Your employer’s employee assistance programme, if there is one. The state MND association on 1800 777 175 also provides information to workers, not only families.

Expect to grieve. You will get attached. When the person dies you are not entitled to the family’s grief and you will have your own, and it is real. Most services handle this badly. Ask for a debrief, go to the funeral if you are invited and want to, and tell somebody.

And notice what you achieved. A shower that happened without fear. A transfer that did not hurt. An infection caught on a Thursday instead of a Monday. A conversation somebody enjoyed. A family who got a night’s sleep. Nobody outside the house will see any of it, and it is the entire job.