My gorgeous beautiful dad has dementia. He was diagnosed about five years ago. When we look back at some of the incidents which occurred in the lead up to his diagnosis, there were obvious signs. But they were signs we only looked at differently in retrospect.
Alzheimers Australia reports somebody is diagnosed with Dementia approximately every six minutes or at the rate of around 1,800 every week. That’s a lot of people. The impact of the diagnosis ripples through families to spouses, children, friends, carers and the community. And although dementia is more commonly diagnosed over the age of 65, it is not a normal part of ageing. We can probably all bring to mind senior citizens, whether in our own families or people we see on tv who are as sharp as a tack, despite being in their eighth or ninth decade. Others may experience early-onset dementia and find themselves being diagnosed in their thirties or forties, a burden which must be even heavier to carry given their relative youth.
There are different types of dementia but essentially dementia causes a progressive decline in how a person functions. It most commonly affects memory, rationality, social skills, intellect and physical functioning. Our family has seen most of these in dad over the last few years. Despite that and despite whatever might happen in the future, it’s important not to lose sight of the person within and to create a world and communities that are dementia-friendly.
Alarm bells rang for us when my dad had a falling out with his sister and brother-in-law, to whom he was very close. He accused them of spying on him and got upset and angry, ceasing all contact. We couldn’t fathom what he was talking about and it was totally out of character – we now know this paranoia is often one of the symptoms of dementia. There were a couple of occasions where he tumbled over but we assumed he’d simply missed his footing and didn’t think too much of it. Another time when I was visiting, he was awful to my mother, shouting at her for no reason. She dealt with it by not responding or challenging him. My dad’s always been a fiery Italian so I just thought he was getting a little cantankerous with age. But the paranoia and irrationality were not characteristic of him but can is a part of the disease.
The reality about a diagnosis of dementia, as in the case of my dad, is that the person they know, and you know they’ve always been, starts to slip away. Dad’s always been a chatterbox. One of my favourite expressions when we’re chewing the fat is “dad, there’s always a story”. Because he’s always had a story to tell about someone or something – he’s never been the shy one in the corner. He’s the one who waves his arms around as he talks – one of life’s squwarkers and squealers with the big personality. Sometimes people with dementia have difficulty word finding and of expressing themselves verbally. Dad’s had a rich full life, full of funny sagas and yarns we enjoyed hearing about. But a few years down the track, dad is quieter. There are fewer stories now.
But he still knows how to enjoy himself. Here is is tucking into a huge plate of pancakes.
oh dad – what would your cardiologist say?
I don’t get to see my dad often because my parents live interstate but I notice some of the changes when I visit. My sister pointed out that he no longer initiates conversation which I realised is true. If engaged in conversation he can still be quite chatty but he doesn’t start as many conversations anymore – it’s harder for him to organise his thoughts. Also I’ve noticed that his conversations or replies don’t quite make sense. Not all the time and not on every occasion, but enough to notice his thoughts are a little more muddled. They live on the mid-NSW coast and his perception and understanding of distances has gone. He thinks he can get a bus to Adelaide and be there in ten minutes. The most awful thing for my mother particularly, is his assistance that “I want to go home”. My dad has repeatedly packed his little suitcase and asked to go home – he says this a lot. It is very upsetting for my mother, who on occasion has jumped into the car and said “ok, let’s go” and driven around for an hour with him before bringing him back to their home. The repeated questioning from those with Dementia are distressing and my mother has spoken of moving back to where he grew up in Adelaide to take him ‘home’ because she feels if she did that at least he would be close to him siblings. I know that if they did, my dad would then ask where he was and ask when she will take him home. It is a heartbreaking battle against declining rationality.
I will always adore my dad and it doesn’t matter to me that he’s a little bit muddled. There are other things which he enjoys and which have really helped dad and my mother to cope. Dad has always loved music. Throughout his life would often sing along to the radio or whistle while he was getting dressed or I would hear him humming around the house. He still loves music. My sister put together an ipod with a range of tunes we knew he’d enjoy, Andy Williams, Frank Sinatra, Frank Miller and big band jazz. He loves it and will sit happily for hours listening and humming along. It’s made a huge difference because it means instead of the television being on 24 hours a day, my mother can put on some music which they can both enjoy and which seems to have a soothing effect. This is one of the Montessori Techniques which is being used to assist those with Alzheimers – where there is a focus on sensory activities – doing, feeling, listening. Dad does a great job helping me cut the tails off the beans. We need more funding for dementia for sure, but we also need compassionate communities.
I realised as well, the last time I was up there, that dad enjoys just going for a drive. It’s a great way to spend some time, in the warmth of the car, enjoying the scenery with me pointing out points of interest in the landscape and him chattering along beside me. He is much less active that he used to be and whereas he used to go up to the local cafe he doesn’t do that anymore although he says that he does in passing conversation. The last time I visited we looked through old photographs and he surprised me by recalling both first names and surnames of old friends. The pictures triggered long term memories and we both enjoyed the stroll down memory lane.
My dad is still in the family home and my mother is his primary carer but she used to be his wife – it is different when a wife becomes a carer first and a wife second. It’s hard for her. I know she feels she can’t leave him alone anymore, when previously she would do. For carers it can become something of a prison sentence because a large part of their lives revolves around the one they have to care for. And the majority of the time they do it on their own. But we can help if we understand more about the disease, have compassion and to offer support.
Carers have to deal with the confusion. My mother found my dad fully dressed at 3am in the morning one time. He did not realise it was the middle of the night and told her he was going out. Another time he asked what the people were doing in his room, looking through all his stuff. There was no one there. We realised he was having visual hallucinations. I was told that re-directing attention in these instances is a good strategy to use, rather than to disagree with them or challenge them which can upset them. My strategy with dad is “how about a nice cup of tea?”. Tea fixes everything right? My gorgeous dad. I don’t need to remind myself not to lose sight of the person within.
My dad used to love to cook – he was always the chef in the family and was never happier than when in the kitchen. Dementia has meant that he stopped cooking several years ago. My mother found him in the kitchen and he’d obviously forgotten what he started to do. She helped him by saying – “it looks like you are cutting an onion Jim, would you like me to help you?”. And by doing so, it reminded him of what he was doing and they continued to do it together.
I don’t know how it will turn out. The struggle with dementia for those affected and those who support them, will continue. But we must also continue to remember that the people we care for, those with dementia, are still who they always were and who we know them to be. We can still reach them, perhaps in slightly different ways by reminding them through photographs, music and story-telling. And by sitting with them and helping them to reach back into their memories to find themselves again, even if only fleetingly – the person within.