When my Dad was diagnosed with mild Alzheimer’s last year, I was handed some pamphlets and a suggestion to contact a charity. That was it. No ongoing care plan, no continuity, no specific guidance or prognosis – and no treatment even. I was left to figure it out on my own.
Learning that Alzheimer’s will slowly take him from me, little by little, is a reality I’m still coming to terms with. Although I went through something similar with my mother 25 years ago, her decline was physical, not cognitive. She had Motor Neurone Disease, so her mental faculties remained fully intact until the end. Alzheimer’s creates different challenges, but is similar in that it is a cruel, diminishing disease where there is no chance of recovery.
Getting to grips with Alzheimer’s and supporting Dad, whilst building a start-up and trying to sustain a living, has been – and continues to be – a rollercoaster ride but it’s one I’ve chosen to embrace. Along the way, I’ve learned some valuable lessons as I muddle my way through.
The subtle signs are easy to miss
Unless you’re around someone day in and day out, it’s easy to miss or even dismiss the early symptoms of this disease and its impact on day-to-day life. On the phone or during short visits, my dad often seems perfectly lucid. That’s the tricky part of Alzheimer’s in the early stages. It can be easy for others to think your parent doesn’t need much care, or you’re exaggerating. But the earlier you detect the signs, get a diagnosis and put supportive measures in place, the better the overall experience can be for both the person with Alzheimer’s and those around them.
Quizzing and correcting don’t help but social interaction does
Many well-meaning people recommend cognitive games or quizzes to help “keep his brain active.” But this sort of thing can make my dad stressed, which is counterproductive and can often make his symptoms worse.
Regular, thoughtful social interaction is what really helps. Unlike passive activities like watching tv, engaging in conversation stimulates multiple parts of the brain. But it has to be the right kind of conversation that flows naturally and doesn’t feel like an interrogation. Some good ways I’ve found to open up conversations and spark meaningful discussions are bringing up news stories, going through old photos and mementos and making observations about our surroundings when we are out and about.
Routine is crucial but so is novelty
Routine is essential in helping my father feel secure. He gets noticeably disorientated and his symptoms can worsen when our routine changes.
But, it’s also important to sprinkle in some novelty and have events or excursions to look forward to. The trick is to plan well and choose activities or trips that won’t be too overwhelming. As long I am with him, he loves our little outings and excursions.
Support, don’t completely take over
When you see them struggling to remember how to do something, and taking forever to do it, it can be tempting to just take over. But bear in mind, taking over activities someone can still do, albeit with difficulty, is disempowering and strips them of the control they have left. Helping Dad to do things himself, whether that is getting things prepped for making breakfast or placing instructions on the cupboards, is what he needs.
Reminiscing benefits everyone
It’s easier and more enjoyable for Dad to remember the past than try to recollect recent events, so we do a lot of reminiscing. Reminiscing together brings a sense of connection, and momentarily lifts the fog of Alzheimer’s. As I’ve asked questions about his past and listened to his stories, I’ve learned so much about his life and my ancestral roots – for which I feel immense gratitude. It’s a humbling experience, and in many ways, it’s made me recognise the privilege I’ve had compared to what he grew up with. It has deepened my understanding and respect for him.
Everybody needs good neighbours
My local community is my lifeline. One of the highlights of our limited social calendar is our bi-weekly movie night with some warm and generous neighbours. Dad’s job is to pick a classic movie for us all to watch that takes him back to his younger years. The anticipation leading up to movie night, the responsibility of choosing the film, the friendly interaction and recollecting bits of trivia from films past, all spark something in him.
Dogs really are man’s best friend
Nothing lights up Dad’s face quite like our two dogs, Dolly and Nicky. They are my caring co-pilots. Their unconditional love, zest for life and funny personalities bring us so much joy, laughter and reassurance. I cannot emphasise enough what a difference it makes having a canine companion (or two) on the Alzheimer’s journey. Beyond the love and fun, they provide a distraction from the stresses and frustrations of the condition, and give Dad a sense of purpose and routine. He feels understood and valued by the dogs, without the stress of navigating complex interactions.
As he himself puts it, “Happiness is a fluffy dog.”
It’s hard to not neglect yourself
When you’re caring for someone with Alzheimer’s, especially when you’re doing it alone, it can be very easy to lose sight of your own needs. I often find myself torn between doing things that are good for me – like exercising or spending time with friends – and wanting to treasure every remaining lucid moment with Dad. Finding balance is tough, but I know that if I neglect myself too much, I’ll risk burnout. This dilemma generates additional feelings of guilt and anxiety but I force myself to make pockets of time for self-care – whether that’s the odd yoga class or getting my nails done.
“If you surrender to the wind, you can ride it.”
This phrase has guided my whole approach to caring for Dad. There is no point resisting or fighting our new reality. Much better to lean in. My plans for my life and future have dramatically changed and my once active social life is a thing of the past, but that’s okay. This is a chapter and I can revisit these things again in the future. By embracing our situation, we have both uncovered new possibilities we would never have enjoyed had we clung to the lives we used to know.
Make the most of the present
Alzheimer’s doesn’t follow a set course, and there’s no way to know how quickly or slowly things will progress. In many ways it’s like walking into a dark room – a scary, unfamiliar space you fumble through until your eyes adjust – but even then, you can’t see clearly. You catch glimpses and shadows, and then suddenly it goes dark again. I often worry what the future holds and how I’ll cope when things get worse and Dad no longer remembers who I am. Amid all the uncertainty, I find focusing on the present and making the most of the time we have left helps
