Just moments after we arrived home from Schoolies, Mum and Dad called Kia and I into the lounge room for a ‘talk’, then proceeded to tell us that Dad had dementia.
Apart from being completely stunned, our main memory of that day was an overwhelming sense of relief – we thought, “Thank God it’s not cancer.”
Little did we know what a diagnosis of dementia actually meant, what was ahead, or how isolating the diagnosis of this ‘old person’s disease’ was going to be. Our knowledge and experience of dementia was very limited. Our grandmother had Alzheimer’s disease but we were quite young and she was in her early 80s. We thought your memories just slowly faded away and that was it. Boy, how wrong we were!
Dad was an electrician by trade, one of those men who could fix or build anything. Extremely intelligent, at the time of his diagnosis he was Project Manager for an engineering company. He estimated railway signalling and was in charge of projects worth tens of millions of dollars. He was an amazing father – he was always very involved in our lives as well as being a very supportive husband to Mum.
When Kia and I started high school, Mum enrolled in full time study at university. Dad was extremely supportive and took on the role of Mr. Mum, doing the grocery shopping, the weekend sports runs and, to our delight, sandwich making. Like many mums, ours had always made us make our own school lunches but when Dad took over he made us gourmet sandwiches... which Kia and I then bartered with other kids for junk food. He took Kia to her two-hour netball training sessions three days a week, staying there the entire time, and never missing one of her thousands of games over the years. The mums and daughters swooned at Dad’s dedication; they nicknamed him the Netball Mum.
Kia and I weren’t your average parent-hating teenagers. We spent more weekends than most hanging out at home, making trips to Bunnings and helping Dad out with his never-ending list of home improvement projects. When Mum wasn't looking we’d all be fighting over the Play Station – Dad was a giant man-child who had no greater pleasure than trying to destroy his daughters’ high scores. He also enjoyed writing notes for school saying we had to leave early for a ‘doctor’s appointment’, then he’d pick us up and take us to see the latest Harry Potter movie instead. But these memories don’t exist for Dad anymore, and sometime in the near future his two little girls won’t exist either, as his memory of us is wiped from his mind and we become another nameless face. And when that day comes it will surely break us...
Dad was diagnosed with the semantic variation of fronto-temporal dementia, which is rare and always early-onset – it only affects people under 65. There is no treatment and no cure. It is very different from most people’s experience with dementia.
Most people associate it with memory loss, like not knowing who people are. But after eight years, while Dad has undergone dramatic changes in personality and behaviour, his memory is only just starting to be affected. His primary deficits are in language – he is now very close to becoming mute.
The disease has progressively taken away his ability to understand the meaning of words. For example, he knows what a cup is, but he doesn’t remember the word for it and can’t understand the word if he hears it. He can no longer read or write, can hardly understand a single word we say and has an extremely hard time communicating. His vocabulary has been reduced to a few key words and phrases such as ‘coming over’, ‘going over’ and ‘good on you’, that make no sense when he uses them in any context – it’s left up to us to guess what he’s trying to communicate.
Just over a year ago Kia and Mum were involved in a very serious head-on car accident as Dad and I followed behind them in another car. Within 30 seconds Dad had somehow accidentally sliced his wrist open, cutting his tendons. He began to bleed profusely. I tried to wrap a shirt around his wrist to slow the bleeding, but every time I tried he would hit me or push me away because it hurt him. He couldn’t understand why I was trying to hurt him and I couldn’t make him understand that I was trying to stop him from bleeding to death. I often wonder who came out of that accident more bruised, Kia or me. Although this is an extreme example, it demonstrates a day in our life and just how frustrating and stressful a lack of comprehension and inability to communicate can be.
Having such a rare type of dementia has been tremendously complicated – most GPs and care services have never treated or even heard of Dad’s type of dementia. It’s also been extremely difficult being a young carer for a parent with dementia. Because it’s so often considered an ‘old person’s disease’, we’ve found there’s a lot of stigma attached to it; our society has such limited knowledge and understanding. And, because most people associate dementia with memory loss and Dad’s primary deficits have been related to language, personality and behaviour, many find it very hard to wrap their heads around the fact that after eight years Dad’s memory is still quite ‘good’... although I use that term loosely.
To us, our Dad died years ago.
Today, we live with a stranger who just looks like our Dad. Our loss isn’t recognised by society because he’s physically still here. Dementia is not a quick death. It’s a slow, painful and tortuous way to watch our Dad leave this world. Our grief is continuous; it feels never-ending. There’s no closure and no chance to move on, just a physical reminder that
Dad is still with us as he continues to deteriorate. We grieve for what he has lost, for what our Mum has lost and what we have lost, both for the present and the future.
Society doesn’t seem to recognise the severity of the disease. If we were to tell people that Dad had cancer, they would be devastated, worried and concerned for us and our family. We would get offers like, “Is there anything I can do?” and people would pledge their support. Rightly so, too, because cancer is horrible and scary – it instils fear into everyone it touches.
When we told friends about Dad’s diagnosis, we would wait for the horrified reaction, the “OH MY GOD, that is awful, I can’t believe it, is there anything I can do?” But the most common reaction we got from people was a resigned, “Oh... that’s sad. I know how you feel; one of my grandparents had dementia.”
We are here to tell you that no, you do not know how we feel because having a grandparent with dementia is nothing like being a teenager whose father, in his early 50s, has dementia.
The differences are stark. Our Dad had a full-time job, we had just started building a house, Mum and Dad had retirement plans, Kia and I had dreams of getting married, having our Dad walk us down the aisle, having children and watching our Dad fulfil his lifelong wish of becoming a grandfather. But we have had to come to terms with the fact that our Dad will not be part of those life milestones.
I’ve been to a few weddings over the years, and I always seem to get quietly upset at three points: the bride being walked down the aisle by her Dad, the father-daughter dance and the father of the bride speech. Whilst I’m extremely happy for the bride and groom, I can’t help but secretly shed a tear for those experiences that I’ll never have.
Instead, we have to witness the man who was our father wither away.
The changes in his personality and behaviour have been the most difficult to handle and come to terms with. Transitioning from having a father who constantly showered us with love and praise, and thought we could do no wrong, to a father who is cold, lacks empathy and love, tells us we look ugly, stupid, fat, and at times has been physically aggressive, has definitely taken its toll. It requires a lot of skill not to take things personally. Sometimes it’s easy and we can laugh it off. Other times we end up curled in the foetal position.
Dad’s extremely limited ability to communicate is as frustrating and stressful for him as it is for us, and it has definitely declined significantly this year. It is very hard to understand what he is trying to say when he only uses a couple of key words to communicate. At times he’s abusive with his limited speech, but his frustration has also resulted in him becoming physically aggressive – such as hitting or strangling. Each of us has been choked, punched or whacked more than once.
His ability to recognise familiar people has also declined noticeably this year. He has trouble realising that Kia and I are not the same person and will often just presume that whichever daughter is in the room is me.
A few years on from his diagnosis, when his personality had started to change noticeably, we were on our Christmas holidays when Dad told me that he might as well be dead, because he thought I was such a failure and was never going to amount to anything. Then he drove three hours back home just to get away from me. As a teenager with already fragile self-esteem, I can tell you now, hearing your Dad who you worshipped say that to you is not something you get over quickly.
Over the following years, Kia and I have found Christmas-time increasingly difficult, as there is a lot of sentimentality around this period for us. We had a very long-standing family tradition where Dad would save up all of his annual leave and we’d go away to his favourite place, and spend Christmas with our immediate family.
Dad’s dementia has made it difficult for him to be away from home, so we don’t go away anymore, and he also doesn’t understand what Christmas is. I usually have a good cry Christmas morning because of all the meaning it has lost – because Dad no longer has any concept of what’s going on and has lost all my favourite memories we used to share.
When there aren’t any physical signs of an illness, it’s very hard to keep in mind that the person hurting you isn’t doing it on purpose. We do try not to take it personally but it can be very tough. We struggle with the guilt we feel because we can get so angry with this ‘stranger’ whose behaviour pushes us to our limits and demands so much of our patience and energy, through no fault of his own.
Over the years, to try and keep Mum at work for as long as possible, Kia and I, along with our older sister Bethany, have all volunteered our time during the week to help take care of Dad. At the beginning of last year I decided to move home to become Dad’s full-time carer for a year.
Living with Dad this past year has been a challenge, to say the least. It has tested every ounce of patience and self-control I have and I can tell you now it doesn’t leave much for anyone else at the end of the day (apologies to my partner James). Trying to tell someone who has zero understanding of the words “no”, “can’t”, “wrong” or “bad” kind of makes life hard, especially when that person has developed a taste for shoplifting, Dad’s new favourite pastime.
And don’t think for a second, “Oh, poor man he’s just confused – he doesn’t know what he’s doing.”
He knows. He knows EXACTLY what he’s doing. When he knows we’re going shopping, he gets changed into his shoplifting attire, which consists of jeans with deep backside pockets and a big baggy shirt to cover said backside pockets sufficiently. Most recently a belt has been added because he’s realised that when you stick copious amounts of stolen goods into your pockets it weighs your pants down.
It started off innocently enough, a chocolate bar here or there. He’d pull it out as we were half way home, extremely happy and pleased with himself as he showed me his acquired booty. But things escalated quite quickly when the following week he tried to break open a glass cabinet full of $700 watches. That was the last time we ever went to David Jones.
These days it’s just a couple of giant packets of peanuts when we grocery shop on a Wednesday. Thank goodness the staff at our local Woolworths are so understanding – they let me pay for his stolen stash secretly, so Dad can continue to enjoy his cheap thrills. It’s small acts of kindness from the community like this that can make all the difference in just being able to get through the day.
Being a young carer can feel isolating but it’s nowhere near as bad as the isolation we felt the first few years after Dad’s diagnosis. We didn’t know anyone our age in the same boat. We would go to information nights with Mum trying to learn about Dad’s illness, hoping to find someone our age going through the same thing. But we were always just a 16-year-old and an 18-year-old in a sea of people over 50 caring for their parents and partners, who were all much, much older than our Dad. But that all changed when Alzheimer’s Australia started a support group for young carers.
We can’t describe the relief we felt sitting in a room of people our own age going through the same thing, experiencing the same hardship. We draw strength from the remarkable people in our group, as well as our amazing group leaders who have helped guide us through our pain, grief and the complex situations that make up our journey. It has been amazing to be able to share stories and not have to explain anything because everyone in the room just gets it. We can share things and make jokes without being judged. To have a group of people to share this hell with has been invaluable. We would be two lost souls without them.
Over the years the services provided by Alzheimer’s Australia have been a continual source of support and education. When Dad was first diagnosed we borrowed books and videos from their library to help educate ourselves about the disease, as well as locating valuable information on their website. We have also frequently relied on their counselling service, which has been a life-saver, helping us navigate the muddy waters of dementia.
I saw a counsellor at uni once when I was struggling with Dad but I didn’t leave feeling any better because she just didn’t get it; caring for someone with semantic dementia comes with a unique set of problems and issues that you really don’t want to have to explain when seeking help. Being able to get help from people who understand what dementia is all about and who have that specialist knowledge is priceless. This amazing organisation has really made a huge difference in our lives and we will be forever grateful for all they’ve done for us, and for the thousands of other families just like us.
Thank you for listening to our story. We are telling it to raise funds for Alzheimer’s Australia SA. We are so passionate about this great group of people and encourage you all to support the cause, so that if your sons and daughters are faced with the hurdles we have been, there will be someone there to point them in the right direction, to guide them through, and most importantly to let them know that there is help and that they’re not alone.
Kia and Sian Woodmore