Cici and Izzy’s story – “I hope sharing our experience helps other young carers”
Cici (28) and Izzy (23) share their experiences of having a parent living with young onset dementia and becoming a carer at a young age.
The death of someone close, even when expected has a huge effect on the whole family. Often, parents and adults avoid talking to young people about the death of a loved one as a way of protecting them. Children and teenagers experiencing loss may not know how to express their feelings. They may need additional understanding and support to do so. Recognising your own grief and the support you need is also important, so you can help your child deal with their own loss too.
Tips for supporting young people experiencing grief
- Set aside time to listen and allow them to express their feelings
- Give them time to open up. Children cope in different ways and may not be ready to share but knowing they can when they’re ready will help
- Find time to share memories about the person. Encourage children to think about their relationship with them. Reflect on the good times, as well as some of the difficult times. There’s a place for fun memories and humour too
- Encourage children to express all emotions. They may feel an array of feelings like sadness, anger or happiness. Reassure them that it’s ok to feel the way they do
- Naming emotions can be helpful for younger children and those with additional needs. You can try this using the phrase “I am feeling…” (sad, hurt, guilty, anxious, surprised). Linking a behaviour to an emotion can be helpful. For example: “I am feeling really sad and that is why I am crying” or “I am feeling so angry that my legs are shaking”
- Create a ‘memory box’ together. This can include items that remind them of their loved one like clothes, gifts, music, letters. They can look at this box when they want to be close to them and bring back positive memories
- Planting a dedicated tree or plant in the garden can be a good place for a young person to retreat to and reflect
- Try to be open and honest without overwhelming them with too much information
- Let them guide you and respond to their questions at a level they can understand and cope with
- Observe for changes in their behaviour which could indicate that they are struggling
- It can be helpful to tell significant people in their lives, such as schoolteachers
Anticipatory grief
Caring for someone with dementia can lead to anxiety, stress and feelings of loss. These feelings can often occur even before the person with dementia has died. As the person’s abilities start to change there can be a feeling of loss, sadness and even anger. This is called anticipatory grief. Children may experience this, especially if their relationship with the person changes significantly. They may take on more of a caring role and feel they should behave differently around the person with dementia. They can feel they are losing a family member who was previously involved in caring for them. They may feel that they can’t talk about it and express their emotions through behaviour. Anticipatory grief is normal, but it is not spoken about as much as grief associated with death.
Tips for supporting young people experiencing anticipatory grief
- Make some time to talk about dementia and the changes that occur in the brain. Watching our video “Let’s Talk about Dementia” may help them to better understand dementia
- When talking about the person with dementia, focus on what they can still do, not what they struggle with
- Reassure them that the person still loves them even if they can’t always show it or remember their name
- Spend quality time with their loved one. Taking part in enjoyable and meaningful activities can help them connect
Book an appointment with an Admiral Nurse
Our virtual clinics give you the chance to discuss any questions or concerns with a dementia specialist Admiral Nurse by phone or video call, at a time that suits you.
