How will my life change?

When someone is diagnosed with MND, the whole family is affected and people can react in very different ways. Everyone may need time to adjust.

As time goes on, the person with MND won’t be able to do everything they did before. They will need more and more help as the disease progresses. Who does what at home will change and this could affect you, too. There may not be as much time for family activities if the person needs more support.

When someone has MND, they may decide to leave work. This means there may not be as much money available.

We were strapped for cash and mum had to go out and get part-time work even though she was also caring for dad and looking after us. My older brothers had to help out, to keep the house running.

Things around you at home are likely to change too.

Equipment will be introduced, to help the person get about or manage day-to-day tasks. Rooms may be converted to make everyday life easier. Mealtimes may also feel very different if the person has problems eating and drinking.

I felt different to all of my classmates. They were busy gossiping and crying about boys and I had MND to deal with.

A range of health and social care professionals may get involved. As the person needs more care, lots of professionals may visit the house.

If your family own a car, that may also need to be adapted or changed to a vehicle with wheelchair access.

Not only does life change, but keeps changing to meet the needs of the person with MND.

You should not have to do things that feel uncomfortable. Even if you think there is no-one else who could do these things, you do have a choice. This can be looked at during a young carer’s needs assessment. This is not something to get worried about, as this is designed to help you. Social care professionals work out what support you and your family may need and can arrange services to help.

You may want to contribute to care tasks. It may give you a sense of purpose and closeness to the person with MND. Many young people like being part of the ‘care team’.

I’d do lots just to make him feel better, like sticking his feet into a bucket of water and scrubbing them clean.

If the person is only just beginning to need help, you may be wondering what you can do. It’s natural to feel helpless sometimes, but there are many ways to support.

I didn’t really know what to do at first, but I’d watch mum. I studied how she did things, so I knew how to do them too.

There may be things the person with MND would like you to do. Likewise, there may be things they don’t want you to do. They may want to protect you or find it hard to let you help.

He was proud and hated being helped, especially by us... he’d only ask if mum wasn’t there and he really needed something. We were a last resort.

You may have to tell the person with MND and other adult carers that you want to do something. Try to talk to them. This way you can all work better as a team and make joint decisions about who does what, and when.

There may be practical things you can do, like helping to prepare meals or shopping. You could take on regular jobs around the house or tidy up, so the person with MND is less likely to trip over things.

I took my little sister up to bed a lot. Mum hates the thought she didn’t do something for us, but we tried to help in small ways like this.

You may have more or unexpected responsibilities because of MND. This can be difficult, but you may be surprised at how well you cope.

The person with MND can be assessed by adult social care services to consider their needs. You can also have a young carer’s needs assessment to arrange support for you. You don’t have to be the main carer for this to happen, just involved in providing support.

This is your right and as a young person, those assessing your needs have to ensure you get appropriate help.

For example, you may need professional carers to come in and help at home.

You may also be given time to see friends or join a club, or keep up with school or work.

Your assessment also provides an opportunity to find out about emergency contacts, local services and financial help or benefits that may be available. This information can be very important, especially if something unexpected happens.

To get an assessment arranged, contact social care services through your local authority. In Northern Ireland contact your local health and social care trust instead. If you’re not sure how to do this, ask your family doctor or GP for help. You can also ask any health or social care professional involved in support for the person with MND.

Why do I feel the way I do?

It’s normal to feel lots of emotions in everyday life – no-one can be happy all the time.

Emotions can sometimes be very intense. As a young person, you are growing physically and emotionally, and these changes can be confusing. This can feel even more challenging when MND creates change around you, too.

This may cause you to feel angry, sad, selfish or even guilty. These are natural responses to a difficult situation and there is no right or wrong way to feel.

Things may feel tense at home. Dealing with MND is challenging and emotions can change quickly. People may not be as patient as before.

Why do I get angry?

It’s normal to feel angry with MND. You may feel angry because:

But you can learn to manage anger. The strength of this emotion can even become a positive force to help you change something for the better.

Why do I feel helpless?

MND is a rare disease and even some health and social care professionals haven’t seen it before. It’s not surprising if it leaves you feeling helpless, as:

Why do I get embarrassed?

Young people sometimes feel embarrassed by adults, by the way they talk or the things they do. This can get worse when someone’s ill, as it makes you feel your family is ‘different’. Most teenagers just want to fit in.

I hated being in a small village at the time. I’d walk down the road and people would stop me to ask questions about what was happening. I just wanted to be invisible. As a young person, you don’t always want to be noticed, you get self-conscious.

Some MND symptoms may make you feel embarrassed. For example, if someone is having difficulty speaking and their words sound odd, they may sound as if they are drunk. You may also find it embarrassing if they have problems with their saliva. Or, you may worry about what other people think if the person with MND uses a wheelchair.

Dad came to watch me in a school drama production as a surprise. Part of me was pleased, but peer pressure in your teens is such a weight. My instant thought was, “Great, now everyone will be asking ‘Who’s the bloke in the wheelchair?’

It is normal to want to fit in with your friends and worry that MND in your family makes you different. You may worry about them meeting the person with MND.

I used to get really anxious about friends coming over. I’d worry what they’d think of all the equipment and changes to the house. Reaching your teens is a really difficult time for worrying about what your friends think.

Try to remember these feelings of embarrassment are natural and part of your own development. There is no need to feel ashamed or guilty about these feelings. You are not letting anyone down.

Why do I feel envious?

You may feel envious or jealous of friends who don’t have to deal with MND.

I used to get very upset when my friends could go out for bike rides with their dad and I couldn’t. I don’t know why bike rides meant so much then, but it seemed so important at the time. It’s easy to be envious of friends doing normal family things.

You may find it difficult do things with your friends because you’re needed at home.

Sometimes we’d have these arguments and I’d slam the door and go out. I was sick of being told that I had to be a ‘grown up’. I just wanted to be like all my friends. Sometimes I just felt like it was all too much.

Plans may need to change at short notice and this can be frustrating if you were looking forward to doing something special.

Sometimes we’d have to cancel stuff because dad had an appointment or was really tired. My mum had this massive calendar on the wall with all the appointments in it.

An illness like MND can also be expensive. The person with MND may not be able to keep working and the main carer may also have to leave work to manage the care. It can be difficult if friends have the latest gadgets and fashion, when your family are struggling to get by.

Money can cause arguments for many families, but MND creates such pressure. Our finances were stretched and I know mum felt guilty because she couldn’t always give us what we wanted or needed as kids.

You may even feel jealous simply because another family is okay.

I was so envious of people who didn’t have to go through this. I didn’t want it to affect me or happen to my dad. Why not some other faceless family? Why us? I know this was selfish, but I couldn’t help it.

Why do I feel guilty?

Sometimes you may feel guilty, maybe because you’ve been angry or embarrassed by the person with MND and then felt bad afterwards. Or because you get to enjoy an activity that the person with MND can no longer do.

I felt guilty if I left mum to go out with my friends, but she liked hearing what we’d been doing and all the gossip.

Why do I feel sad?

Finding out that someone close to you is very ill is unhappy news. Feeling sad is expected. As time goes on, you may also miss things you used to do together, if the person can no longer join in or gets too tired.

It’s okay to feel this way. Everyone around you will probably feel sad too, so try not to hold it in all the time. When you show your emotions, it can give others permission to admit how they feel. Sharing can help everyone to feel more supported.

You need someone to tell you it will be okay in the end. Not that there will be a cure or anything, but that you will find a way to get through the sadness and live your own life. Because you will.

Is it okay to feel happy too?

Yes. This is natural. We can feel a sense of happiness in lots of different ways, whether over something that happens or because we are enjoying ourselves. You shouldn’t feel guilty about being happy simply because someone else is ill. Good things can happen even in difficult times.

Being positive may help the person with MND to feel brighter, too.

Tracking my feelings

If a difficult emotion only affects you now and then, it may be something you can manage. If it feels constant or extreme, you may need support.

If you feel up and down, it may help to track what’s happening over a week or two. Tracking can help you think about your emotions, rather than just feeling them.

We provide a table in the printed version of this guide to help you do this, which you can also download at: www.mndassociation.org/ypinfo

Not all of your emotions will relate to MND, but they are all important for you. We’ve included positive emotions, as it’s important to note when you feel happy. Try to be honest when using the table, so you can see if there is balance between emotions that are challenging and those that feel positive.

How do I cope with these feelings?

When someone close to you has MND, it affects the whole family. Everyone will cope in their own way and some days will feel easier than others.

The following suggestions may help you find ways to deal with difficult emotions.

Getting involved and being prepared

The truth is, you can’t stop MND. No-one can, but there are things that can make each day feel a little better.

Helping with chores, care tasks or just spending time with the person with MND can be positive. You may feel more like ‘one of the team’.

By going through difficult challenges, you find out how to manage things. You wish you didn’t have to learn things like that, but you do get more confident about supporting someone.

Sometimes adults try to protect young people by not telling them everything or shielding them from certain things. Ask for information and honest answers if you feel confused. If you know what is likely to happen, MND symptoms and care needs are less likely to come as a shock.

Ask others involved in care what to do in urgent or emergency situations. Even if you just find out where emergency telephone numbers are kept, you may worry less about possible problems.

What if I react badly to something?

If you’re reacting badly to things that normally wouldn’t bother you, it can help to find a quiet place and think about what has caused you to feel this way. If you know the type of emotion you feel, it can be easier to control. This can help you manage these feelings when they start, so they don’t take over.

I would act up, just because I could get away with it. It’s easy to do. Try to treat your family with the same respect as before MND and allow the person affected to still be the parent or grandparent – or at least as much as they can be in the circumstances.

You can find guidance about emotional health for young people, including emotions such as anger and anxiety, at: youngminds.org.uk

While time out can help you feel calmer, sometimes you may need to talk about what’s happening with someone you trust.

Having someone to relate to outside of home is important, as they can tell you when you’re out-of-line and you somehow take it better. You sometimes need that and you can’t always take it from someone at home where all the pressure is.

There may also be an activity where you can work through your anger, such as a creative task or a physical sport.

Kickboxing was the one thing that helped me feel better. It was a release. My coach was aware of what had happened and helped me channel my anger and focus my energy in a structured way.

Crying and laughing

I didn’t cry in front of him because I thought I should be strong, but sometimes I’d go to my room and cry and cry.

Crying can help you release feelings of sadness and anxiety. There is nothing wrong with this. Laughter is a helpful way to release tension too. Even during sad times, there are still things that make us laugh. Don’t feel guilty about this. It’s not wrong to find something funny and the person with MND may feel more positive if you try to live life as normally as you possibly can.

If MND has taught me anything, it is firstly that it is fine to laugh at the things you laughed at before. And secondly, any achievement, no matter how big or small, you know they’d be proud of you.

Talking with someone you trust

Letting things out is so important. Just tell someone if it gets bad and why you’re feeling that way. Don’t struggle with everything in silence.

Talking with other young carers

It can help to share experiences with others in similar situations to yourself.

Many areas have groups for young carers. They should involve trusted people to help, and often organise activities or trips. Most of these groups describe young carers as anyone under 18 who helps support someone who is ill or disabled. Look online for your local group or ask one of the following for guidance:

• your school or college
• your GP
• your local authority or council in England or Wales
• your local health and social care trust in Northern Ireland.

The MND Association also has branches and groups across England, Wales and Northern Ireland. Many of them hold family days or arrange fundraising activities. You may be able to meet other young people on these days, who share similar experiences to yourself.

Talking with a counsellor or professional offering support

If emotions get really difficult, you may need some help. Talking about your feelings with trained professionals can help you find ways to cope and feel more in control.

I was acting up, being selfish, but the whole world felt unfair. There’s still a hole in the living room door where I punched it in anger.

Counsellors are people who are trained to listen and help you work through your worries. They can’t take away the problems and challenges you face, but they can help you think about ways to cope.

Some are counsellors by profession, but many other professionals also have this training and can support you, such as school nurses, some teachers, social workers and hospice staff.

Not only can counselling help in the present, but it can help prepare you for the future. By facing your worries now, you are better placed to prevent challenging emotions from building in the long term.

My younger brother is the most grounded now and he had a full year of counselling after dad died. The rest of us chose not to have this and we’re okay, but it gave him ways to think through problems and emotions.

If you would like counselling or similar support, an appointment is usually arranged in agreement with your parents or guardian. The following people can help find a suitable counsellor for your age group (there may be a waiting list and sometimes there may be a charge for the service):

You can find out more about organisations offering support at the end of this guide.

If you don’t feel counselling is right for you, there may be other ways to work through feelings:

Maybe do some kind of activity with others who understand how you feel. Doing something positive helps to take you away from sadness or loss, and you feel you’re accomplishing something too. A singing group or doing something for charity, whatever the activity, it just needs to have a purpose. Then you rebuild a sense of who you are as a person and what you’re capable of doing.

Time out to be you

We all have to adapt to change, as it happens around us all the time. Yet MND can change things very quickly. This makes it harder to cope with emotions.

Where possible, it can help to keep doing everyday things you used to do before the person was diagnosed with MND. If you are helping out a lot, this may not be easy, but try to find time for things that feel familiar. This could be as simple as watching a favourite television programme or being with your friends. Anything that distracts you from the more challenging emotions can give you time to feel a little calmer.

It’s important to do normal stuff like hang out with your friends, otherwise it’s not a normal life.

Keeping fit and healthy can also help you feel more positive. Eating a balanced diet is important, but exercise or sports activities can also help by:

• improving or maintaining fitness
• providing a sense of accomplishment
• giving you much needed time for yourself
• providing contact with friends.

Can anything positive come from MND?

Although MND is a very difficult disease to cope with, good things can happen.

It’s not all doom and gloom. There are positives, you just have to look for them and appreciate them for what they are. Special moments, new skills, learning how to deal with difficult situations – these are all things you can carry with you in life.

You may be able to spend more time with the person who has MND than you did before. For example, if your mum or dad has MND and they decide to stop or cut down the hours they work, you may have more time at home with them.

I used to do my mum’s hair and nails. We spent a lot of time together, just the two of us. I’d paint her toe nails in multi-colours and we laughed a lot. Before she was ill she never had time to do silly things.

Many young people say that they become closer to the person with MND than before and appreciate the time they have together.

The thing that helped the most was spending as much time as I could with my dad to build some very special memories with him.

Do I tell my friends?

You may be worried about telling your friends what is happening at home. Some people find it easy to talk to friends about life at home. Others find it more difficult to open up. Do what feels right for you.

I would tell my close friends, but not the whole school. My close friends understand.

Sometimes, talking things through with a friend who is supportive can be helpful, but remember that MND is a rare disease. This means you may have to help them understand.

My friends had never heard of MND so I had to explain it all to them, which made me upset.

You may find this guide helps you to find the right words. Say what you feel ready to say. You can always explain more at a later stage if needed.

Sometimes I say I’m fine when I’m not, but I don’t want to talk about MND all the time.

You may just want to be with your friends and talk about other things, without having to think about MND. You don’t have to talk about MND if you don’t want to. Try not to feel guilty when taking a break, as the person with MND would not expect you to constantly think about the disease.

You have to do normal things with your friends to make you feel normal.

Friendships can change when you have to deal with difficulties at home, especially if you help to care for the person with MND and you’re needed at certain times.

My friends are all really nice most of the time, but I think they get fed up when I can’t do something because I’m needed at home.

If you live with the person with MND you may get anxious or embarrassed about bringing friends home. It can seem a lot for a friend to take in, for example:

• the person with MND may be in a wheelchair or find it difficult to speak
• there may be lots of equipment to help the person with MND at home
• care tasks may have to come first, before anything else can happen.

Other young people found it difficult. Some knew how to react, some didn’t. I was going through an emotional time and not everyone was mature enough to handle it well.

 

---