North Auckland farmer Fergus Riley has uncovered many important lessons in caring for his father Peter, who has Alzheimer’s – including some unexpectedly positive ones. Fergus tells their story.
My father was diagnosed with cognitive impairment 10 years ago, but I first noticed a difference back in 2002 when he was 61, long before any diagnosis was made. It turned out to be Alzheimer’s, an often familial neurodegenerative disease my grandfather also had.
When I was growing up, Dad was a tremendously successful engineer who helped build one of New Zealand’s biggest engineering companies. He knew the answer to everything and as a child, I tested that knowledge endlessly. But Dad could also be volatile socially, which made me feel like the father to my father when we were out and about, from my early teens onwards. I felt I was covering for him when he was being awkward, or trying to keep him calm when he got a bit ruffled.
I mention this for two reasons. This “management” prepared me for later in life when I became his carer. But more important, I’ve found Dad has changed in a lot of ways for the better since developing Alzheimer’s. He’s always been a great person, but he’s now one with more empathy, patience and intuition, as the barriers to these emotions have fallen away. I feel the hidden positives of this disease aren’t discussed enough – because, as outrageous as it sounds, they really do exist.
People with Alzheimer’s can teach you a lot. They live in a world with no baggage, just thoughts of the immediate moment. This is one of the big things they can teach us: don’t carry that “stuff” – just drop it. Learning to let go of the past and take each situation for what it is in the moment has been helpful in my relationship with Dad as his carer, because bringing in old stuff clouds your thinking and affects your reading of a situation.
It’s a huge decision to care full-time for a parent. I had some concerns going in: loss of freedom being one of the biggest, as I’m a person who feeds off social interactions. But thanks to many accepting friends, I took Dad along to gatherings, stayed over at people’s places, brought him in with me when I ran our quiz night at the local pub, and so on. I make sure Dad is dressed well, as I’ve found that makes a big difference in the way people treat him. I don’t always do the final clothes check thoroughly enough, though. One time when we were about to head out, he complained his sunglasses were a bit dark – probably because he was wearing his swimming goggles.
It was a big call to bring Dad up from Auckland, where he’d been living for years with his wife (my stepmother), back to the farm he used to run to live with me. But it was definitely the right one. It has been a new beginning that’s given him an equally new lease on life. The decision was made by Dad’s late wife and me after she was diagnosed with terminal cancer. We both thought it best to take Dad up to the farm so he could be settled when she passed.
Although he did settle in soon enough, at first he thought I was kidnapping him. This made him quite volatile, so we had to learn how to de-escalate things. I learnt it doesn’t matter if you rationally resolved an argument; he wouldn’t remember it. However, his body would “remember” the adrenalin of the disagreement and he’d remain “on alert” for as long as it was in his system. I found the way around this is to always finish the discussion with a hug – and, beautifully, love kills the adrenalin every time. His behaviour is then completely different and for the next hour he’ll be incredibly helpful. I’m sure there’s a lesson in there for all of us.
A big part of being a carer for someone with Alzheimer’s disease (AD) is understanding the person’s routines. At first, I wasn’t comfortable with Dad going walking by himself, as I couldn’t predict what his behaviour would be. So I started using a tracking app on his phone that emailed me when he got a certain distance from home. Now, having gotten used to his routine, I encourage him to go for short walks with the dog if I’m at home, because it’s great for him to be his own master for a while. As we live in a rural area and know everyone in our community, that works fine – in fact, my grandfather did the same thing. I don’t think this is such a good idea in an urban setting, though.
One of the key roles as a carer is to explain what’s going on. This is incredibly calming to the AD sufferer, although the repetition can be taxing for you. Keeping the person you’re caring for well fed and trying to avoid situations when they’re tired is also important. Not understanding what’s going on through tiredness or stress can trigger an adrenalin response in a person with AD that can make them unpredictable. In cases like these, a strong coffee with sugar helps kick their brain into gear. Ironically, the caffeine has a calming effect as it wakes up the brain and allows for better comprehension. Healthy brains suffer under stress – with a compromised brain, that can be doubly so.
Using whiteboards can also be calming. When Dad first came up to the farm, I used them all around the house so he always knew what “the plan” was. At first, when we visited Dad’s now late wife a few times a week in Auckland, having a plan visible to him outlining when we were seeing her next was hugely comforting to him.
As we came closer to her passing, I was concerned about what I would tell him each morning after she’d gone. There are no manuals for this, and you can only go by instinct. My conclusion was that to “seed” the memory of her passing, I would need to remind him, but if he was tired or emotionally drained, I might not. It eventually worked, but this was a really tough time for Dad. We built a seat on the farm to honour her memory: it’s bright yellow, catches the sun and can seat five people – and often does.
Before Dad’s wife died, my stepsister and I took them out for dinner at the Esplanade Hotel in Devonport, on what was to be their last night together, both dressed in their finest. Before the end of the night, I asked the band to play a song for them so they could have their last dance together. It was a beautiful and moving moment. When we left it was pouring with rain, so we drove right up onto the footpath outside the door, to get them into the car without being drenched. Looking at them together, I wanted the night to never end.
The way I see it, the carer of a person suffering from memory problems should always be someone who holds a lot of their memories for them. Memories are like a road: if it’s not well travelled, it becomes dusty and forgotten. Travelled often, it becomes a highway. I often find myself overhearing a conversation with Dad and someone else, and just by adding a word or two when he loses his train of thought, it triggers his memory so he can continue his conversation. In fact, you can open up old memories by calmly talking about them, almost like re-opening an old road. Under no pressure, the memories come more easily, but asked quickly, it’s as if there’s a disconnect between the recollection and the conversation.
I’ve put up pictures of close family and friends in a history tree around our home, so the repetition of viewing them can keep loved ones in Dad’s memory for longer. At times, Dad thinks I’m his brother, so we go through these pictures a lot. AD is a fascinating disease. Sometimes you can think the person who has it is not making sense, then you realise their thinking is actually just a little leftfield. You should never underestimate the ability of a person with AD to understand what’s going on, even if they struggle to find the right words. They also become a “barometer” of the energy around them, reflective of their environment, with good energy feeding into more good energy. In the right company, you wouldn’t know Dad has AD. I have some good friends who enjoy staying up with him, having a pinot and chatting long after I’ve gone to bed.
Dad’s mental wellbeing is very closely linked to both his environment and physical health. Parts of his memory are actually better than a year or two ago as his fitness has improved. We also eat a lot of memory-boosting foods, such as red cabbage and red onions, as plenty of research points to the key role diet plays in brain health.
My past work in the health and fitness industry definitely helps me look after Dad. If his health is compromised, then my life is affected too, so the motivation is there on many levels to keep him fit and healthy. If he was in a rest home surrounded by people he didn’t know and not getting much exercise, I’m sure he would fade very quickly. But it’s amazing how highly functioning an AD sufferer can be with the right help. You can have a huge influence on their health and functionality – the key is not to lose yourself in the process.
A lot of people draw similarities between being a carer for someone with AD and bringing up a child. There are some commonalities, for sure: you have to share your dessert, for example, or there’ll be trouble – but there are also some big differences. To start with, you didn’t have them, they had you. And in our family’s case, four other children too. They also used to be the boss of themselves. This can cause problems, as with any dependant you need to exercise some form of control. Their life is also shrinking – and yours can too, if you let it. This can be sobering in the tougher times, but you just need to deal with each situation calmly and with respect – and have a laugh wherever you can along the way.
Me: “Dad, you can’t put on two pairs of underwear.”
Dad: “Yes you can. You just put on one pair over the other.”
In the past couple of years, I’ve got together with my amazing partner, Erika, and now Dad and I share our farmhouse with her and our new baby girl. Dad has been an active part of this new beginning in life. In fact, I met Erika when I was out with Dad. Afterwards I told him, “I’m going to marry that girl some day” – to which he replied, “Good on ya, mate!”
It was a completely different journey in the beginning without my partner, and it’s been so great to have another calm voice during some of the more chaotic times. It can be a struggle to get time alone when you’re a carer, but luckily Erika has been very understanding. She’s the right balance of empathetic and firm with Dad, and he loves her to bits. He often listens to her more than he does to me.
I’m super-proud of what my family and I have done for our dad. He’s healthy, happy, surrounded by good people, in a beautiful environment and very settled. The journey will continue for some time to come with more adventures, funny moments and no doubt some tough times, too.
A big part of my current identity is seeing myself as a carer. When I’m not one anymore, I know I’ll need to regroup and heal, as I will no doubt suffer guilt from letting go. Thinking about and preparing for the next phase helps with this, and I reckon a big trip away with my family will be just the tonic.
But some things don’t change; my dad is still my dad and always will be. Caring for him has taught me many life lessons, but none greater than this: be as good a person as you can be. Because if you go through a change mentally later in life, there will always be people who will treat you according to how you were to them, no matter what happens in the days that follow.
For more information about Alzheimer's, visit Alzheimers New Zealand.
This article was first published in the July 2019 issue of North & South.