A child’s world can be turned upside down when a parent or grandparent is diagnosed.
Alzheimer’s disease and other dementias can have a devastating impact on the lives of the young children and grandchildren of those involved. What happens when you are a teenager or schoolchild and your dad or mum is diagnosed with early onset Alzheimer’s? A parent with cancer or other serious health issues can still by and large fulfil their role in family life whereas someone whose whole ‘self’ is fast disappearing is in a different situation altogether. Suddenly the whole picture of the future changes from the safe and predictable to the totally unknown and the impact for the young can be as distressing as bereavement or family break-up.
What will my friends think?
It can be very difficult for children and teenagers to accept that parents, traditionally the backbone of the family unit and the providers of economic, emotional and physical security and stability, may be wrestling with problems that are increasingly impossible to conceal or downplay. At an age when conformity is everything and the idea of having a ‘weird’ or ‘different’ home life to everyone else at school is terrifying, coping with a parent whose behaviour is increasingly eccentric or potentially embarrassing can be devastating. The first thought may well be, ‘what will my friends think?’ followed by, ‘how can I keep this a secret?’
When do you tell them?
While the couple themselves are battling with the shock of the diagnosis and trying to get a grip on future plans, it is important to also be sensitive to the impact on younger members of the family. Encourage frank discussion of what is going on so that you can all support each other. Reassure the children that they are not in any way to blame and must not feel guilty. They may also need reassurance that it is not contagious and that their friends can’t ‘catch’ Alzheimer’s if they come round to play. How soon you let the outside world know what is going on is up to you but keeping secrets puts a huge burden on everyone. In this day and age when very few families are totally untouched by Alzheimer’s or other dementias, there is far less stigma and far more understanding in society as a whole.
Talking to teachers
Keep teachers in the loop so that they are aware of what is going on at home and make any allowances necessary. Children under pressure may appear to behave perfectly at home and then act out at school or become depressed. Teachers can keep an eye open for any uncharacteristic behaviour and also make themselves available to talk.
Make use of any counselling and support groups that are available to you and your children. A neutral third party can provide an objective perspective on things and it is often easier to open up to a stranger than someone close to you who you may fear will be judgemental.
Growing up fast
Children may find themselves in a situation where they have to take on extra responsibilities and are forced to mature early if a parent or grandparent with Alzheimer’s disease is being cared for in the home. It is important that all members of the family communicate and support each other emotionally. Children can understand and cope with far more than adults credit them with, as long as they know what is going on and feel that they are being treated fairly. Keep expectations realistic and share chores so that no one feels put upon. Children may feel left out or marginalised so be sensitive to their needs and try to schedule dedicated family time that is special to them.
Grandparents, traditionally providers of unconditional love, treats and spoiling, may be robbed of that role by Alzheimer’s disease, becoming the cared-for rather than the carer. Children, just like adults, may find it hard to differentiate between the disease and the person. Mood swings, angry outbursts and paranoid delusions can be difficult for children to understand and handle. It is as hurtful to a child as it is to an adult when a loved one forgets their name or does not recognise them. This is why expert advice is often helpful, as are regular discussions about what to expect.
Things to do together
There are things that children can do with a parent or grandparent that can give pleasure to both parties. Colouring in, simple crafts, playing favourite music and singing along, dancing, going through old photograph albums, watching old films or TV shows together – these are all activities that can add value to a visit. They may no longer be able to access our world so we need to access theirs. Encouraging a person to talk about whatever they want to reminisce about can open up a whole world of old stories.
The new normal?
As the trend to start families later in life becomes mainstream more and more children will find themselves growing up with a parent with Alzheimer’s disease. Schools and society as a whole will have to make the necessary adjustments as this becomes a fact of life, just as similar adjustments were made in the 1960s, 70s and 80s when single parent families became more common and the stigma of divorce and illegitimacy disappeared. The important thing is to keep on talking and encourage the children to speak frankly with you about the situation and their concerns so that no one feels marginalised or neglected.