Resilience

Being resilient is about being able to withstand setbacks, frustrations and personal tragedies. During a crisis, the resilient person will do their best to cope with events calmly, with grace, patience, acceptance and hope. The less resilient person might respond with anger, fear, frustration and impatience and see themselves as the victim. We have identified seven key areas that help make a person resilient and put them together in a model below. These include: taking care of your basic needs, emotional stability, confidence, social support, speaking your truth, seeking insight and having faith.

In the animation below, the pyramid on the right is stable, being perfectly balanced and carefully stacked up. It wobbles when knocked, but is in no danger of toppling over.

In contrast, the parts of the pyramid on the left are misshapen, carelessly piled up and is much more likely to fall over when hit by something. The ball is there to represent the difficult situations that life can sometimes throw at us.

As a health care professional, being resilient is important, as caring for a person with MND can be physically, mentally, emotionally and even spiritually demanding. This can place pressure on you and your wellbeing can suffer. Remember, you can only provide the best care for others when you are also taking care of yourself.

Basic needs

Taking care of your basic needs means making sure you look after yourself, your health and you are eating and sleeping well. This means knowing what your body needs and what will keep you rested, well and strong. Exercising and taking regular breaks will help you regulate your energy levels and your mood.

Below, Dame Barbara Monroe gives her insight into basic needs.

Emotional stability

Caring for someone with a terminal illness can stir uncomfortable and difficult emotions. Deep breaths and quiet reflection will help you work through your feelings. Being able to regulate your emotional response to show emotional stability and predictability is key to managing challenging situations. Breathing techniques, meditation and mindfulness are a good way to keep calm. They have become very popular and there is an increasing demand for them within nursing. When you are caring for someone over a period of time, it may be distressing when they die. Ideally you should have supervision sessions with your line manager to discuss this and any other issues.

Below, Dame Barbara Monroe explains more about emotional stability.

Confidence

Having confidence, self-esteem, as well as a belief in your ability to deal with negative setbacks is at the core of being resilient. Caring for someone with MND requires cooperation between a team of people and working hard to do your part is essential to providing the best care possible. It is important to ensure you believe in yourself and the care you deliver.

Below, Dame Barbara Monroe explores why its important to have confidence in what you do.

Social support

Strong relationships and support networks are essential for dealing with any difficult situations. People are there to help you and want to do so, so make sure you let them – this may be a colleague or a friend. Perhaps your workload is getting too much but you feel like you should be able to do it all yourself – however you can’t do everything and nobody should expect you to.

Below, Dame Barbara Monroe explains why it’s important to have a strong support network.

Truth

Caring for a person with a terminal illness often brings your own mortality into focus and you might want to talk about this. It is okay to feel this way and talking to a person, such as your line manager, close family member or a friend, can help you. Sometimes people can struggle to tell people what they are thinking and instead ignore their pain, only to have it resurface months or years later. Being honest about your fears, vulnerability and needs is essential to working through difficult situations. When you are providing nursing care, there are patients who will want to talk, may wish not to talk, or may want to talk about anything else but their condition. It is important to gauge what will make them feel most comfortable.

Below, Dame Barbara Monroe gives her insight into caring for a person with a terminal illness.

Insight

When faced with a challenging situation for whatever reason, being aware of what has led to it can help you change your behaviour to take a different path next time. You may feel you didn’t handle a certain situation well, or perhaps a patient or their family member became angry for some reason. There are many different sides and perspectives to a situation, and all sides and experiences can be valid. Living with MND is distressing and challenging for individuals and their family and this can impact on their behaviour.

Below, Dame Barbara Monroe explains more about how to handle challenging situations.

Faith

Difficult situations can often bring a crisis of faith. Seeing a family struggle to deal with MND might cause these feelings. However, it is important to trust that things will get better in time and people do heal and find deeper personal meaning in what has happened. Faith isn’t just about believing in God or being spiritual, it is about believing in life and trusting yourself. Having faith also means practicing empathy, forgiveness, compassion and appreciation.

Below, Dame Barbara Monroe explains more about the importance of faith.

Patient

Receiving a MND diagnosis can be devastating and some people will become depressed, using denial as coping mechanism. Staying positive and resilient can be helpful as it can encourage people to stay active and live for the moment. Every person is individual and will face different challenges. Some may find support groups helpful. Support groups can offer help to those with the condition and those close to them.

Family/carers

“When someone has MND, the health of their partner or main carer can sometimes be overlooked. I feel any professional carer should also consider the effect of MND on this person.”

Steve, professional carer

Every carer should have their needs assessed and given timely and appropriate access to respite care, information, counselling and bereavement services. It is important to support the emotional and physical needs of the carer in a timely way so that they can continue their caring role. Carers should also have timely and appropriate access to benefits and entitlements to help manage the financial impact of their caring role.

Touch points

“Hey you, I’m in here, this is me, Inside this broken body, can’t you see? I have a perfectly functioning brain, And my mental faculties, remain; It’s just that my extremities have failed My moving parts, they are derailed” – Pollyanna.

MND is a rare disease and many health care professionals will never care for someone with MND during their career, or will see very few cases. Once the disease has been diagnosed then a variety of health professionals are involved, some of these may be part of a MND Care Centre, if available, or a neurological centre. By working together these professionals’ main focus is to ensure the best possible quality of life through symptom control and ensuring timely access to services and support.

Below are some examples of the different environments where health care professionals and family members and friends come into contact with MND.

Accident and emergency

As the condition progresses there could be instances where the person with MND has to go to Accident and Emergency. This may be as a planned or unplanned admission, for example as as a result of a fall or breathing problems. If you work in A&E you may never have seen someone with MND before and this in itself can be challenging. More information can be found here.

“They didn’t know… they gave him oxygen – they didn’t know… I was shocked. My brain said to myself – they don’t know what they’re doing” – wife of man living with MND

The MND Association has a resource developed for the use of acute, urgent and emergency staff.

GP surgery

Most patient’s first touchpoint is with their GP and as we have already seen even getting to a diagnosis may be long and protracted.

“Shouldn’t every GP know about it? Or have something they can tap into – I’ve got someone with Motor Neurone Disease, what do I do now? Where can I point them? How can I help them?” – Maria, person living with MND

Personal contact

MND can not only affect the patient, but can have a huge impact on those close to them from day one. Their daily life can see significant changes.

“You’re terribly, terribly busy… it’s just such hard work. There’s so much to do all the time, always on the go. And what you’re not doing physically you have to sort out mentally” – wife of MND sufferer

School

As a school nurse you may come into contact with children who have a parent who has developed MND. It can feel natural to try and protect children from any distress, but it’s also important to explain the situation so they don’t worry or even blame themselves. The school should be informed if someone in the family has MND, as if they have this knowledge and recognise the impact this will have on the family, then the school can be an effective source of support for the child.

Hospital ward

Some secondary conditions, like respiratory problems, related to MND mean that patients may need to be admitted to hospital for a period of time. It is highly likely they will be placed on a ward where the staff may not understand the condition.

“They do need to understand what people with MND can and can’t do. That there’s weakness… they person living with MND may be very courageous and try to do things too much. They need to understand better” – wife of man living with MND

The MND Association has materials to help support children and young people.

At home

Most MND patients want to be cared for and eventually wish to die at home. This requires integrated care from health and social services and, in some cases if available, specialist care systems such as hospices.

“We had to learn very quickly what to do… it’s not just all the nursing stuff or the support stuff, but there’s also the business about how you’re going to get the equipment into your home – if you can” – wife of man living with MND