Resources for the Journey – Dementia
The realisation that a loved one has Dementia is heartbreaking.
As we travelled along the road of mum’s Dementia, it was hard for us to find our way.
It was hard to live through this grief. A grief for things-that-are, and things-that-will-be.
How do you grieve when someone is still alive?
How do you rejoice in a life that is diminishing? Simple joys seep away as recognition is lost, words evaporate, consciousness disappears?
How do you care for someone who is lost in a frightening place, where all have become strangers and everywhere is confusion?
How do you go on with your day to day life when no-one knows the weight of sorrow that you bear? No-one has died, there has been no funeral. And this is no disease that a hero can overcome.
How is it you can beg of God, to take her life?
…that you sit by a bedside, and tell her she’s free, that we will care for her son.
These were the sorrows that pierced as we journeyed to the end, to the final farewell.
Let me share in your grief if you travel this road.
Let me say, I will bear your sorrow too. I have walked this path, and will walk it with you.
May I hold out a candle – some resources - a glimmer of light for this dark path?
Dementia Australia www.dementia.org.au
Dementia Australia is the national peak body for people of all ages living with all forms of dementia, their families & carers. We provide advocacy, support services, education & information (From their website).
Their website is filled with information and support for those living with dementia, those caring for them, and health professionals. If you need advice about anything, whether you are right at the beginning and suspect someone has early signs of dementia, or further down the path – call them. They are compassionate, and have all the latest information. They have a helpline (1800 100 500) and can also provide email support. They work hard to raise funds for research too. Our family found it beneficial to participate in some of their fundraising activities to feel like we were doing something to fight back against this disease.
The Australian Ageing Generation Handbook, Josie Gagliano
I cannot recommend this book highly enough and I wish I had discovered it sooner. Josie Gagliano writes of her journey in caring for her mum (at home). It is balm to the soul to be given the privilege of being able to share in the story of someone who faced the struggles and griefs that Dementia causes. To know you are not alone in your experiences is so precious, as this journey is so very isolating for all who are involved. Josie also explores the issue familiar to many (particularly women), as they become part of the ‘Sandwich Generation’ juggling work, care of their own children and the care of their ageing parents.
Josie then takes you by the hand to walk you through the issues you may face, including decision making around choosing care for your loved one, caring for yourself, understanding Dementia (and signs and symptoms). There are personal interviews from a wide range of carers, who share their journeys.
The book ends with an excellent summary of all the relevant resources which can be accessed, both nationally, and by state.
Still Alice, Lisa Genova
Powerfully written from the perspective of the Dementia sufferer, Lisa Genova explores what the journey could be like. Alice is a Professor at Harvard who wants to find out why she is becoming increasingly disoriented and forgetful. A compelling journey begins when she receives a diagnosis of Dementia. Genova is a master story-teller as well as having expert knowledge in this field. If you want to understand what your loved one might be experiencing, this book is powerfully written. The movie is also well crafted, however, I found that the book allowed more time and depth in exploring the progression of experience as the Dementia took hold. In a strange way, I think reading the book allowed me more space to understand and to grieve my mother’s suffering.
Books for Children:
With two young children I wanted to find a way to explain to them what was happening so they could understand (rather than be frightened) as we visited my mum, particularly as she became unable to communicate.
I came across two excellent picture books (I am a big fan of picture books!) which both served different stages and purposes. Both are published by a delightful Australian publisher: Wombat Books, and can be purchased from their website: https://www.wombatbooks.com.au/
Do You Remember? Kelly O’Gara and Anna McNeil
"Do you remember how much we loved each other?
The times we would spend all day in the fields?
You’d tell me stories and we would laugh for hours.
Those fields always remind me of you.”
This book is particularly useful for children who have had a lot to do with their grandparents and who are now coming to terms with the changes. It is the story of two mice (Grandma and Grandchild), re-telling precious memories from their lives together.
I love the way the younger mouse tells the story for the older. Each incident validates the memories created in times spent together, as well as the perspectives and emotions of the participants.
As the story unfolds, the memories incorporate the early signs of Dementia, when things started to go wrong “you started hiding things in strange places” and the feelings of the old mouse “I could tell you were upset” as well as others involved “[mum] didn’t let me visit you alone after that”.
The story is so simple, and yet so powerful in portraying the progression of Dementia, and the struggles each person faces as events unfold. It is a gifted author-duo who can turn a deep knowledge of dementia and its associated issues into a simple, beautifully written and illustrated picture book.
I also love how this book provides ways for children to respond to their loss and grief, predominantly through showing that we can tell our stories to remember our loved ones, and that we can remember their stories too – through journals or pictures. It provides healthy ways to remember and cling to our memories. The last lines are poignant:
"The sound of your laughter and the warmth of your hugs will stay with me forever. I will always love you."
At the end of the book there are pages that explain what dementia is; how to interact with someone who has dementia, and things you could do to spend time together. It ends with some helpful tips for parents as they talk with their children.
When I see Grandma, Debra Tidball and Leigh Hedstrom
This book is excellent for children whose grandparents are in the later stages of Dementia, and need to have a way to respond to someone who appears to be always sleeping. Using the construct of a Photo Album, it cleverly intersperses scenes from the child’s daily life (walking to visit grandma, singing in the choir, brushing her hair) with visits to Grandma, and how the children can bring joy to her – singing to her might remind her of days of dancing. As the book progresses, the memories re-tell Grandma’s life (as a bride, a new mother, with growing children). The text gently guides children through the emotions they might face as they visit grandma, and ultimately, as they say goodbye. The final picture of Grandma is deliberately vague, to allow the reader to interpret it and explain death when the time comes. It also provides hope and symbolism – surrounded by bird of paradise flowers, a young grandma is walking towards someone. The final page has the family gathered around Grandma’s photo album, providing a prompt to discuss how we remember someone we love.
I hope these resources serve as a candle in the dark. I wish you God’s comfort as you travel this journey. Remember, you are never alone.
Justine is married with 2 gorgeous kids (7 and 4) who are the joy of her life. She is a primary school teacher and currently has the privilege of teaching Languages which she is absolutely passionate about.