For many children, grandparents have a special place in their heart. I can’t help but smile and shake my head when I think about my own grandfather, best described as a red-headed larrikin – cheeky but with charm. You know the type, he would have let us get away with anything as a child.
The Long Goodbye
Dementia is often referred to as ‘the long goodbye’ because the person you knew changes over many months or years often physically, mentally, how they communicate and emotionally. Loved ones begin experiencing grief and loss well before the actual death – as can the sufferer themselves. This means all the emotions that are tangled up in the grief umbrella can be experienced – anger, deep sadness, confusion, blame, worry, resentment, shame, guilt, regret. It’s important to know this so you can show yourself understanding and compassion and allow others to help out too.
“Grief is experienced long before the actual death.”
So, how can you support your child during this time?
Every family and situation will be different. Sometimes the grandparent will be living with you, sometimes they might be living in their own home or an aged-care facility. So, the following points are just things that might be worth considering as you navigate this challenging time.
Explaining dementia to children
It’s important to be honest with children about what’s happening to their loved one. However, honesty doesn’t mean they need to know everything. The age and development of your child will determine how to explain things.
Come up with a way to explain dementia to your child. This is just one possible way:
“The brain is a bit like a remote control for the TV. Our TV remote has all these super tiny connections inside it saying what happens when different buttons are pressed, it remembers things like what channel we were watching and what time it is. When someone has dementia, it’s like the connections inside the brain, their remote control, have got twisted and sometimes when a button is pressed it doesn’t do what it was meant to do. Sadly, once these connections have stopped working properly, even the best doctors don’t know how to fix them. Eventually, all the connections stop working.”. It is quite likely there will be a heartbreaking follow-up question, “Will they die?” Take a breath and consider the following as a possible reply, “Yes, but we don’t know when.”
It is normal for young children to ask the same questions over and over. This is what helps them to process things. It is ok to keep giving them the same answer.
Allow children opportunities to ask you questions. Remembering they are young so they might not know a respectful way to ask a question. For example, they might screw up their nose and giggle as they ask you “why is poppy dribbling when he speaks?” A possible answer might be, “I know this seems a little funny because this is not what poppy used to do, but because poppy’s brain has stopped working properly, it means he can’t help dribbling.”
Another common question is “Will I get it too?” A possible reply is, “No, it’s not like cold or tummy bug, you cannot catch it by visiting or touching Nan.”
Acknowledge your child’s emotions. For example, “It is ok for you to feel angry and sad that grandad forgot your name." Following this up with a hug might be comforting.
Oh, and one of my favourite books to read with children about someone with dementia is an oldie but a goodie -
Wilfred Gordon McDonald Partridge, by Mem Fox and Julie Vivas
This book is a great way to start conversations about dementia with your child.
Visiting Grandparents once dementia takes hold
You know your family and children best so how often your child visits their grandparent once dementia has advanced will be entirely up to you. Depending on the age of your child, you might like to ask for their opinion and feelings. Medical Professionals and social workers supporting your loved one, will also be able to provide some guidance. Frequent visits might mean changes appear more gradually so might be easier to process.
Following are some tips for visiting with children. Always consider what is appropriate and safe for everyone and allow for 'debriefing' time after visits:
If an adult is able to see how the grandparent is that day before the child enters, the adult can then give the child a ‘heads-up’ of anything that might be different or confronting.
Outside visits can be easier for children and possibly a nice change of environment for their grandparent. Playing eye-spy might be fun or take turns naming things each person can see or hear.
Bringing a pet along can be comforting and a good conversation starter.
Your child might be able to read some pages of a book to their grandparent or turn pages of a magazine their grandparent might be interested in, chatting along the way.
Bring along music grandparent enjoyed in their youth or your child might play a musical instrument. If safe, having fun with a dance might provide some laughter. Even a sitting down dance can be enjoyed.
Colouring or drawing together with large paper and thick crayons or thick pencils. Pre-warn your child that their grandparent might not be able to draw things how they used to and might accidentally draw over your child’s drawing.
Bring along simple games your child’s grandparent might have played as a child such as dominos, bingo, or they could complete a jigsaw puzzle together.
Tossing a sensory ball or soft toy to each other might be fun.
If your child and their grandparent are comfortable to do so, consider grooming tasks such as your child brushing their grandparent’s hair, putting on nail polish, rubbing in hand-cream or giving a foot massage.
Support for you and your child
Caring for and watching a loved one with dementia can be challenging and heart-breaking. There can also be moments of joy, laughter and contentment. I know this from experience. Of course, it is different for everyone.
What is the same for everyone though, is that self-care is vital and allowing others to support you and your family is also important.
There is lots of really useful information on the Australian Dementia website:
I would feel privileged to support you or your child during this journey of the long goodbye.
Contact me, Jo (she/her)
0468 853 749
Counselling outdoors around Camden and Macarthur, NSW