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.
as usual a great blog and love reading the replies/comments of others to, cant wait for when,, and you will find charles” recording, it will be great and you do both speak from the heart as we all should more often. to the moon and back xxxxx
I think the recording, which I know is there as I listened to some of it a few weeks ago, has simply gone into hiding, maybe like your ‘who’s online’ tabs on Facebook??!! love you too xoxox
Kate, You write with such a passion and in such way that I can almost read inside your mind. I’m sure this sounds trivial but I don’t enjoy but look forward to walking with you in this what can only be so painful for you. I admire your spunk and willingness to share your day to day reality. I think you quite often when I forget just simple things like where I left my glasses or what day it is. You are in my prayers daily!! Rita
Thanks again for your insight Kate – your message is always redolent with the complexity of living with YOD – its impact is clearly on you but also on those around you. Having spoken to you and Pete and to other family, partners and spouses of people living with dementia – ranging from younger people to people who are older – an aspect that strikes me is how the disease has a ‘pebble in a pond’ affect. As a community we will need to recognise the impacts of living with someone who lives with dementia. We will need to recognise that – as important as the need to find out the clinical causes of, and responses to, all types of dementia is – we will necessarily need to explore how to respond to the emotional and mental health impacts on those who experience the collateral damage. With what is seen as the gathering wave of dementia, will come, as surely, the gathering wave of impact on others and our need to develop responses to these impacts. If we don’t do this, it will be at our cost and peril.
A good observation as always Philip… there is quite a bit of research about the health impacts of the family carers in particular, but more so the husbands or wives, not so much about the kids or the parents of YOD.
One of the problems here also is the fact that High Care patients are just that “High Care’ for obvious reasons, they need help with everything. It would be hard to watch a young mother i.e. you as much as it was for you to watch your DFIL. But the reality for your boys would be foremost in their minds as they are living it way too young
I think equally hard for a young or middle aged husband or wife… I see the effects of the beloved partners of so many with dementia at any age, and it is horrific, exspecfially the guilt of the residential aged care placement. For the kids, I think they are able to switch off more, but underneath must be devastated also, and will impact them later on in life in some way.
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I sometimes wonder if we as a society have in ingrained abhorrence of anything slightly different to normal. This attitude is most likely ingrained into our psyche from an early age by parents and peers quite unwittingly, by snide comments probably not meant to be heard and probably regretted afterwards, but once said, they find fertile ground in young minds. I think we have a long way to go in changing this psyche in the whole of society, to accepting the way people are, and I mean a deep down acceptance, not just a superficial one. I also think that this applies in reverse to those afflicted by something, taking an attitude of “what the heck”, and getting on.
It may be easy for me to say these things today, but tomorrow is another day and the “what ifs” are very strong in my mind right now.
HI Jeff, you have hit the nail on the head, but doing it is harder doing this than than thinking it. We use the term ‘it is what it is‘ all the time in our house, and work hard on accepting things and simply getting on wiht our lives. Don’t dwell too much on the ‘what ifs’, they can hurt way too much. Kate
I am interested in hearing how your children are doing as well. I admire you for your courage to share your story.
I interviewed my youngest son a while ago, and am trying to find the recording to write it up… and then will have to seek his permission to share some of the really pertinent bits!! It was incredibly painful, abut illuminating and very freeing, as we both spoke very candidly from the heart, sometimes a rare thing to do with adult children.
It says a lot about your relationship that you were able to have that conversation. We conversely did a series of videotaped interviews with my mother, for which I am very thankful. If you son is willing to share his comments, I would be interested in hearing how he is processing things. I wish you the very best.
one day hopefully… I’ve got to find it first!!!