It was a tough day when I had to tell my school age children I had dementia, something we all thought was a ‘old persons’ disease. They were probably as confused as I was, but because I had been through a lot of other health issues, for them it was more of a roller coaster, just another thing to go wrong in our family. As I have progressed, albeit slowly, they have had to learn to cope in the best way they can. It is difficult for them to have a mother who forgets things or can’t work things out anymore. For years, they even think we know everything!! When they are young, children rely on us for everything, help with homework, transport to and from things, shopping, being taken to the doctor and sporting events, and so on. Now that this is not possible, whilst it is awful, I have no choice but to find other ways to support them. As a mother, I feel guilt and sadness that I am not there for them in the way I used to be. I am only glad they were almost finished their schooling, and not babies or in primary school, as some children of parents with YOD are, as that would be so much worse.
Mostly they try act as if nothing is wrong, and manage any obvious changes as they appear. Our way of coping is to use humour; for example they used to introduce me to their friends as the ‘dementer’ in the family (from the Harry Potter books). In fact if you have seen those movies, the dementors perfectly represent in a visual way how it feels inside, as if the dementia is sucking the life and goodness out of my soul. I have used that analogy almost since being diagnosed, and in fact the Harry Potter site says of the dementers… A Dementor is a Dark creature, considered one of the foulest to inhabit the world. Dementors feed off human happiness, and thus cause depression and despair to anyone near them. They can also consume a person’s soul, leaving their victims in a permanent vegetative, and thus are often referred to as “soul-sucking fiends” and are known to leave a person as an “empty-shell”. For me, this says it all, it represents perfectly how it feels. Writing and blogging is helping to restore that emptying shell, as my written words are not only a record of my life, but a window into my soul, and a way of refilling the empty shell.
I’ve written about Harry Potter and dementia before, but find it valuable in helping others to have some small understanding of what it is like. As well, it was a way for me to connect with my children, and helped us to use humour as much as possible. Some will not see the humour in being introduced as the Dementor of the family, but at the time it was one way of coping. Having a mother with dementia, and then an elderly grandparent in residential high care was difficult for my children. When he lived at home, they willingly visited him, and even when he went into low care, they were ok about visiting. However, once he went into high care, they were too confronted to visit, as the thought of their mother being in an AGED care facility was too much for them to cope with. This is one of the more subtle challenges for children of having a parent with younger onset dementia.
Ps. There is a lot more to write about the effects of dementia on children, so todays blog is merely an entrée.