Talking With Young People About (ALS)
“Although we were a close family, we didn't talk much about what was happening or what might happen in the future. I wish we had talked more because a lot of my worries would have been dealt with. I remember worrying that dad would become ill looking after mum and that she would have to go into a hospital. Only after she died did I find out that dad was as determined as I was to keep that from happening. I would encourage people to communicate; it can save so much worrying”.
Telling children about (ALS)
A person diagnosed with (ALS) is suddenly faced with unwelcome and frightening changes that will affect...the whole family. Many parents remember how shocked and sad they felt at the time...They describe their reactions as so ‘mind-numbing’ or devastating’ that they didn't feel strong enough or informed enough...to tell their children until...sometimes weeks later.
When is the ‘right’ time to tell?
One of the hardest things to face is how and when to tell the children. Family counselors recommend telling children...as soon as you can. They have found that even very young children can detect their parents’ unhappiness and anxiety. Fear develops quickly if children are left to ‘guess’ about what is going on. They are likely to start worrying that it must be their fault...
What might be helpful to say?
Find out first what they already know -they may have overheard whispers (that) have given them a false picture. You could ask them something like: “What do you know about mum being so tired?” Or ”What would you like to know about daddy’s legs?” Then fill in any essential information they don’t already know. Help them put their feelings into words. You might say something like: “It felt scary when the doctor said I have (ALS). Sometimes it still does - but I'm having my good days...I'll get my head around it ...How are you feeling?” Give them a hug for sharing their feelings. Reassure them that you’ll get through this time together.
Keep communication strong
Keep encouraging your children to ask questions as (the ALS) progresses, so they can understand what’s happening in their own way. Continue to reassure them that it’s not their fault, that no-one is to blame for it. Praise and encourage your children as often as you can. If you have difficulty talking, you can still hold ‘flash cards’ that say: “You did really well”; “I’m proud of you”; “I love you”. Body language like the ‘thumbs up’ sign or blowing a kiss can be as reassuring for a child as actual words. Think up a few signs of your own to let your kids know how you feel about them. Have bright things around the house - photos of happy times... Keep life as ‘ordinary’ as you can but also try to make your children feel special sometimes. One dad...takes his children out of school one day a month to do something together. Involve the kids in making decisions about the future, such as planning a holiday... weekend activities...a birthday party. Encourage them to keep up their normal interests, sports and friendships. Your family and friends may be able to help ...if you are pressed for time. Show your sense of fun so that the children know it’s OK to be happy too...“Keep trying to have fun. We had friends with young kids...they...really lifted dad’s spirits. He used to take them for rides on the back of his motorized wheelchair...” Prepare children for change. Involve them in decisions about...new equipment, modifications to the house, etc. Invite older children to sit in on meetings with the health care team...talk with them (first) about any questions they would like to ask. Encourage kids to concentrate on what they can do rather than what they can’t - for their family and for themselves. Keep things as ‘normal’ as you can - don’t change any agreements you have already established about behavior, bed times, coming home from school or social events. Children may feel an increase in anxiety about other changes at home. It’s important that they don’t feel forgotten’ or unimportant. Tell them regularly that you love them and want them to be happy.
How schools can help
Teachers...should be told if someone in the family has (ALS). If they...know how the disease is affecting the family, they can be a real source of support for the child. Children’s schools become a very important part of their lives when a parent is ill. Make sure the school understands that your children probably don’t want to receive obvious extra attention. Most children want life at school to remain as ‘ordinary’ as possible. It would be very helpful to the school staff if you could let them know of any changes at home that might affect your children’s emotions and performance.
Living with (ALS)
(ALS) progresses more quickly for some than for others. If it progresses slowly there is more opportunity to adjust...and to maintain regular family activities, routines and roles. Changes, and their impact on family life, will be more difficult to manage if it progresses quickly. “Do everything together you possibly can. Don’t put anything off...Deal with today. Plan for tomorrow”. It’s a strange thing to say, but there are positives as well as negatives when a family has to share a serious illness. It is a sad experience...no-one ever chooses...But living with it can help your family to support and love each other in a deeper way than you might have expected. You have the opportunity to focus on just how important relationships are...Other parents recall how they grew to realize...how valuable it was just talking and doing things together. Sharing your own feelings with your child will help them to understand theirs:
- Don’t be afraid to cry in front of your child - to them it is a natural thing to do. If you are worried about distressing them, it can help simply to let them know that you do cry in private
- Children use a range of ways to let out their feelings, including play and drawing. Watching what they do may well be the best way to gauge their feelings
- Children might use anger to express their fears, anxiety or even jealousy at the amount of attention their loved one is getting
- Children, particularly older ones, use denial as protection. They may withdraw or refuse to talk about it, hoping that by doing so it will go away. Remember that this is a normal reaction
- Children need to be shown that they are loved. If a parent suddenly can’t play with them or take them to school, they may interpret this to mean that they no longer love them. However disabling the disease, there should still be ‘special’ times to be alone together
- Finding ‘special tasks’ for children to do to help is a great way to make them feel involved and important
- Maintaining as normal a routine as possible for the child goes a long way to keeping their sense of security. Show them that life must go on and, if necessary, get outside help with routine things so that you have more time to spend with your child
- Many children - and parents - find comfort in putting together a special book filled with photographs and momentos of happy times. This will be a wonderful source of good memories for the child in years to come
- Older children often find that simply talking to their parent about their plans for the future helps. Again, in later years, they will be glad to have had the chance
Under 4 year olds
Children under 4 are usually too young to discuss things in depth, but they can become frightened very quickly if they have to guess why their parents are sad. Keep your explanation simple: “...mummy’s feeling sick/tired. It’s not your fault. mummy and daddy love you very much and we’ll look after you”. Family counselors recommend the ideas below as the best ways to communicate with young children:
- Keep them happy, secure and worry free
- Encourage them to do positive things with (the loved one with ALS), such as having regular times for a cuddle and chat
- Reassure them every day that you love them very much
4 to 8 year olds
This age group focuses on the ‘now.’ They don’t think very far ahead, or question the cause and effect of things. One minute they might ask you quite searching questions about (the) illness and seem really upset. The next, they’re outside playing happily. They won’t want a lot of information, but they may feel anxious that the problem may be their fault, a punishment for something ‘naughty’ they've done. Reassure them that they haven’t caused (the) illness - that no-one is to blame. Children in this age group tend to be obsessed with germs. They are likely to think that (ALS) is ‘germy’ and dangerous. Make sure that they know that they can still kiss and hug you and sit on your lap and they won’t ‘catch’ anything... However, it’s better not to force a child to get physically close ...if they show any reluctance or fear. Some children have a natural resistance that will only be overcome if it’s not made into a big deal.
8 to 12 year olds
It’s not as difficult talking with pre-teens. They’re beginning to want to be included, respected and listened to within the family. They usually won’t want to know much about (the) condition early on, but will probably ask more questions as it changes. When they do, ask them: “What exactly would you like to know?” Answer honestly and ask if they would like more information. Let them decide what and how much they want.
Teenagers...may act ‘cool’ rather than show their real feelings. Older teens may adopt a very adult air and try to reassure you that they’re OK; they’re under control and not to worry about them. Underneath they may be juggling their fears and emotions with their own worries about their ‘identity’, acceptance by their peer group, how to be taken seriously by adults, and getting their homework done. By 15 or so they are also beginning to move away from family-centered activities and face issues towards being a young adult in their own circle. As they get older, children have more mature perceptions and a different level of understanding. They may shoulder a heavy responsibility as a caregiver, or they may be at college and feel torn between home and student life.
Encouraging young people to maintain their links with the outside world is vital. Reassure them that their friends and activities are essential in maintaining a balanced life. Young people may not talk about how much they are hurting, as they don’t want to add to...worries and stress. Emotionally though, they can be on a roller coaster ride...flattened by grief one day, behaving like a little kid the next, then suddenly sullen or hostile. They may feel guilty about having mixed feelings about a parent’s illness...very sad about it most of the time, but also resentful that it’s made them ‘different’ from their friends. They may resent the ‘invasion’ of their home by health care professionals and the fact that the disease takes up so much of their parents’ time and energy.
Teenagers can feel upset if their (loved one) develops ‘emotional lability’ – laughing and crying unexpectedly or inappropriately - or has symptoms such as trouble sitting up straight, dribbling or unclear speech. They might stop bringing their friends home, or stay away from the house a lot.
“I used to worry about what other people would think when they saw or met dad in the later stages. He’d wear a headband to stop his head from falling forward, and although it was functional, it wasn’t stylish! I remember feeling embarrassed about him being in the wheelchair and having drink-stands/talking computers etc, even though everyone told me not to be.”
It’s natural to want to protect teenagers from too much reality. But this age group can talk about the future...with a lot of ..intelligence. One-to-one discussion is more effective for young people. If you can, take your teenager to a ‘cool’ place like a popular cafe at a quiet time, or a walk in the local park. It shows them that you regard them as more of an adult than a child. As (ALS) progresses, it’s important for teens to spend quality time with their (loved one). They need the chance to build and strengthen their bond of love. It will also help them look at themselves later as a good person...This is critical for helping them develop a sense of self respect.
- It can be important for a teen’s self esteem to contribute something to their parent’s care, but not to be overwhelmed by it. Try to help them get a good balance between sharing some of the care, going out with friends and continuing their normal activities
- If communication or movement becomes difficult, watching videos or listening to music together can be a bonding experience
- Suggest something practical they could do on a regular basis, such as reading out loud the highlights of the news or the sports page.
“Don’t think that because your parent has (ALS) that they are not interested in your life anymore. I used to sit with dad every day and tell him what I had learnt at school.”
Keeping a diary can be helpful for teens to record things that happen, feelings, poems, drawings etc. It can also be used to write down things they want to discuss…
“I found it really helpful to...write down all the things I wanted to tell dad the next day. I did this at night when I went to bed as this is when I used to get really upset...So I wrote down what I wanted to say so I could process it and relay it when I wasn't so emotional.”
Talking about loss
(ALS) causes a series of losses. It involves increasing levels of disability and changes in what a person is able to do. Most parents find it hard to tell their children that at some time their (loved one with ALS) will die, because that can sound as if there’s no hope. But there will come a time when you need to prepare the children for the idea of loss and death. How soon to tell them, and how to do it, usually depends on how resilient each child is... What you say will be determined by the child’s age and the stage of the disease. However, it’s worth remembering that children have a very different sense of time - anything described as ‘in the future’ could mean tomorrow, so try not to worry them unnecessarily. What your child knows about death and dying will depend on their experiences, age and quite possibly their religion. Whatever they understand, it’s important that they realize that even though someone they love will die, the happy memories will be with them forever. Equally important is to dispel any fears your child might have about the actual process of dying. Their only experience may be violent death in films or on the news, and they should be reassured that this is not what happens.
It may be difficult...but young people say it helps if their parents can be realistic and positive. If you can show your children how to manage a really challenging situation like (ALS), you set a good example of how to manage tough times in their future. There may be days when you feel hopeless, overwhelmed, fed up and resentful. EVERYONE feels that way sometimes, even when they don’t have to cope with a life threatening illness. Try to keep talking to your children during good and not so good times. They will learn that it’s OK for them to have ‘down’ days too. You are helping them to learn how to manage life’s ups and downs. It helps to keep yourself as healthy, positive and rested as possible, to focus on what you can do now, and to make the most of each day. Wherever possible try to see the funny side of things. A sense of humor can often help to relieve stress. Find new things that you can all do together.
“Dad’s attitude helped me and sharing my feelings with friends/family, writing it down, sharing a project that we both felt strongly about - writing a book about his life & illness - feeling like I was part of the journey.”
Hope and courage are very important to a family living with (ALS).(ALS) is a very hard thing for a family to have to live with. Yet it can also be a chance for every member of the family to grow as an individual and become closer to each other.
There are publications available that help parents talk to children about death and dying. These can be found in your local library, bookshop, hospice, or online.
2 to 7 year olds
- Beginnings and Endings with LIFETIMES in Between – A Beautiful Way to Explain Life and Death to Children by Bryan Melville & Robert Ingpen. A beautifully illustrated book about the natural lifetimes of all things and how life can be cut short. Recommended ages: 2 to 6
- The Fall of Freddie the Leaf by Leo Buscaglia. A charming picture book about how the seasons change and affect living things. Recommended ages: All
- When someone special has motor neurone disease - aimed at 6-12 year-olds, this is an illustrated booklet about the disease and its impact on the family. It is written for children to read on their own or with an adult
- Grief in Children – A Handbook for Adults by Atle Dyregrov. How to respond appropriately to a grieving child’s needs
- Someone to Talk to – A Handbook on Childhood Bereavement by Pat Donnelly (produced by Barnardos)
- Sad Isn't Bad: A Good-Grief Guidebook for Kids Dealing With Loss by Michaelene Mundy. A sensible and easy to read book
- When Dinosaurs Die: A Guide to Understanding Death by Laurie Krasny Brown & Marc Brown. A picture book where friendly dinosaurs explore their problems - the same sort that human beings have
- With You and Without You by Anne. M. Martin. Mum, Dad and their four children react differently when Dad’s told he will die within the year because of his heart condition
- You, Me and the Rainbow by Petrea King. A book to help parents express their love and connectedness with their children
- Something I've never felt before: how teenagers cope with grief by Doris Zagdanski - an intelligent book for young people
- Helping Teens Work through Grief by Mary Kelly Perschy - this book helps adults connect with grieving teens
- When your parent has motor neurone disease - aimed at teenagers and young people, this is written by young people themselves. It describes their feelings and experiences when a parent has MND