I’ll always remember the month before my sixth birthday. It’s a short memory — I think it’s got a bit hazy over the years — but I remember it. I was sitting on the living room floor. My little hands on the carpet. My mum was crying on the phone. A grey phone, which I’m sure had an orange button on it somewhere. It was my dad informing my mum that her dad — my grandad — had just died.
My grandad had been battling cancer. I was heartbroken without even realising it. In hindsight, it’s clear to me that, in that moment of unequivocal sadness, my life was impacted. Everyone has lost someone in their life. And with each person we lose our course changes. We may not even realise it at the time. But we change.
After the death of my grandad, I had one grandparent left — my maternal grandmother. I have fond childhood memories of times spent with my gran: summer holidays at her house, BBQs in the garden, and sleepovers filled with sweets and detective shows on TV.
Now, when I visit my gran, I’m faced with unpredictable emotions. Guilt, loss, grief, anger, and love. That’s what dementia does. This disease has taken away my gran’s independence. But although it may not be obvious, I know she’s still there, behind the disease.
“Those with dementia are still people and they still have stories and they still have character and they’re all individuals and they’re all unique. And they just need to be interacted with on a human level.” — Carey Mulligan
Since my gran’s diagnosis of dementia, I’ve learnt important lessons worth remembering. I’ve decided to pen five of these lessons in the hope that they might help you too.
Lesson one: Our loved ones benefit from our visits.
I don’t pretend to see my gran every day. Our family suffers from fractured relationships and disconnectedness. Is any family truly perfect?
My Mum is my best friend. I can’t imagine a world without her in it — it would be a very lonely world with less laughter and more discontentedness. This makes it all the more difficult to witness her ongoing struggles to balance ‘keeping the peace’ and often being left to manage my gran’s care. Over the past little while, I’ve decided to take on a more proactive approach with my gran’s care to help ease that struggle.
I’ve noticed that simple visits mean the world to my gran. These visits help to put my gran in a better mood and she becomes a little more relaxed. She doesn’t always remember our conversations — we sometimes have the same conversations several times in one visit — but I see how happy she is when she’s able to chat and reminisce. Thankfully, for me, she still remembers who I am. At least for now.
Remember: Loved ones with dementia still have emotional memory. They remember how an event has made them feel after forgetting the details of the event. Use photos and stories to reignite those memories.
Lesson two: It’s always okay to have some fun.
Part of the frustrations with my gran’s situation is that she spends a lot of time alone. I often go into her house to discover that she’s staring at a blank TV screen. This is an issue we’re trying to resolve. It’s difficult to implement the proper care she requires due to pushback from other family members. As a side lesson, we should always remember that dementia is never an “us versus them” situation. It should always be a “we’re all in this together” process.
It could be things as simple as watching a TV show, looking through photos, and sitting in the garden. My gran always perks up when she has company and is doing something she sees as fun.
Remember: Your loved one still enjoys fun. Try to concentrate on the process of an activity and not the results. What matters is that your loved one is enjoying themselves.
Lesson three: Set realistic expectations.
It’s sometimes too easy to set yourself up for frustrations when setting unrealistic expectations for your loved one with dementia. It’s a constant juggling act of respecting their independence, providing the right care, and going through the turmoil of emotions. It’s okay if you’re not okay all of the time.
I found that learning as much about the disease as I could, helped me to empathise and understand my gran.
It’s hard to watch a loved one change before your eyes. However, remember that they are not changing, the disease is progressing.
Your actions and words matter. Set realistic goals and learn to expect the unexpected.
Remember: Underneath the disease, your loved one is still there. They still have emotional memories and the way you act can impact them — even if it doesn’t seem like it at the time. Take a deep breath and know that your presence matters.
Lesson four: Let go of the guilt.
When a loved one’s dementia progresses, it becomes more common for us to feel guilty. I often find myself feeling guilty for being embarrassed by my gran’s odd behaviour in public, or guilty for not wanting the responsibility of caring for her.
Even though we do our best to make sure we’re doing all we can, that guilt still lingers. It’s common though. And understandable. Dementia is a disease that affects the whole family. When family is involved, guilt is sure to follow.
Remember: It’s common to feel guilty and helpless. You’re not alone if you find yourself with these feelings. These are part of the progression of dementia. Dementia is our most-feared illness — it’s okay to think “why me?”. As long as you’re truly doing your best, that’s all anyone can ever ask for.
Lesson five: Keep family members involved.
This is a big lesson — one I can attest to. It’s important to recognise that you’re dealing with a stressful situation. It’s okay to ask for help.
Call and talk to people individually or write a family newsletter. If you keep the lines of communication open with your family and friends, they’ll be able to understand more easily what you and your loved one are going through. The better they understand, the more willing they’ll be to help.
Remember: Caregiving isn’t easy. Pull together as a family and work together for everyone’s benefit.
I hope this article helps you in some way. I’m still learning to understand this awful disease. It’s not an easy one to figure out.
Dementia does suck. There’s no stopping it. There’s no cure.
But the best memories are worth fighting for.