When her father suffered a head injury and was later diagnosed with a type of dementia, Teena Gates was determined to become his full-time family caregiver.
Now 95, her father has good and bad days. Despite the emotional ups and downs, Teena would not swap her new life for the world. In this piece, she reflects on her caregiving journey, the joy it gives her, and how she navigates the challenges along the way.
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My dad grows fabulous rhubarb, helps with the dishes, and plays with the dog. But, occasionally, he will forget to put one foot in front of the other and fall flat on his face. He loves a barbeque and will sit in the sun, smiling and talking politics. But then, out of nowhere, he'll reach out to squeeze the flaming coals to see if they're hot. On good days he's my dad. On bad days he hides under the duvet, afraid of the world.
Occasionally he forgets where he is.
He forgets who he is.
He forgets me.
A traumatic event and a dramatic change
This Saturday, Dad is 95. Three years ago, he was still driving a car, and I was still climbing mountains and working full time in radio and TV. Since then, our lives have changed dramatically.
Dad had a serious fall in 2018 while we were both shopping in Blanchardstown in Dublin. It was a traumatic event. Dad suffered a severe head injury leading to months of recovery and a lengthy hospital stay. When I brought him home, at last, we publicly battled via media campaign for a funded care package. I needed the help, so I was going to fight for it!
Happily, the day before his birthday that year, I bundled him into a wheelchair and finally got him home. My heart was bursting with delight and love, and I promised that he could stay at home and I would care for him forever.
I have never doubted or regretted that decision for an instant, and seeing his blue eyes crinkle into a smile is the biggest reward I could ever hope for. I love my dad, and he loves me.
Becoming an advocate for caregivers
I've been blogging about our journey, for many reasons, ever since. First, I've been a journalist since I was 17. I've been writing since 7 years old, when I used to lie on my back, gazing at clouds and scribbling bits of poetry into a scrapbook. I don't know how to live without cataloging my existence. Dad has been a part of all that over the decades. He was often dragged in front of the camera, appearing in the newspapers as his daughter involved him adventure after adventure! So, it felt natural for both of us that I should write about our relationship.
But in struggling to bring Dad home from the hospital after his fall, I also became an accidental advocate for other caregivers. In telling my story, I found I was telling other people's stories too, which I think is essential.
I'm not vain enough to think I'm "the voice of caregivers everywhere," but I can offer a whisper about the world I now find myself in. Because we don't hear a lot from caregivers. They're too busy doing the caring to take to the streets to protest. Who will look after their loved ones while they're out holding a placard?
I also suspect that some caregivers are reluctant to ask for help. They may think it’s disloyal to their loved one, somehow. At least, that's the way I often feel. I don't want to let the team down by suggesting the burden is too heavy or that I'm not up for the challenge.
A steep learning curve
I wouldn't trade my new life for the world, but a little support goes a long way. When Dad's agency caregiver comes, I usually leave the house to take the dog for a walk. I return re-energized. A short break can help to make up for a sleepless night or a scare when you both narrowly avoided calamity.
The constant need to be awake and aware shocked my system when I began this new chapter of my life with my dad. In the past, when I interviewed caregivers for news reports, I thought I knew what caring 24/7 meant.
I now realize that I didn’t.
Even with the greatest amount of empathy and imagination, living through a particular situation is the only way to understand it.
When I say 24/7, I mean it. Even something as simple and taken for granted as going to the toilet alone is no longer an option. Either the door needs to be open while you keep a listening ear for trouble, or someone joins you!
As a newish caregiver, it's been a huge learning curve. I thought at first that providing personal care for Dad would be my toughest trial. Yet it turned out that changing pads and washing and dressing him have been the easiest things to get used to.
The emotional side has been more complicated. I've had to learn to predict Dad's moods and deal with dementia. To understand how to ease and appease my dad as I simultaneously self-soothe my own emotional distress. I don't always do it well... and then I have to deal with the guilt.
Sometimes Dad has episodes of agoraphobia which he also transfers to me. On those days, he won't allow me to leave the house – even to pin the laundry on the line. I'm trapped and frustrated on bad days like that, and then the guilt begins. I want him to be happy, but his condition often makes him sad. On those days, too, the remorse sets in.
I frequently feel inadequate.
Help in the form of technology and man’s best friend
It took several weeks to learn that there are pressure pad alarms to wake me if Dad gets out of bed. The proximity alarms warn me if he heads for the doors or stairs. Cameras watch his bedroom while I'm out of the room. Until I learned of and bought these things, I slept in a chair beside his bed in case he moved. I was terrified of my dad having another fall and ending our journey.
So, technology has helped, and so has our dog. We call her "#GoogleDog" because she can "search and find." We rescued Google from a shelter four years ago. The idea was to keep Dad company while I was still working full-time at the local radio station. So, one day, I went looking for a Jack Russell and came home with a German Shepherd with sad eyes.
We thought we were rescuing her, but she's actually rescued us. Whatever Dad's mood, he can always talk to Google, and she always understands. She also helps me by jumping onto my bed if Dad gets upset in the middle of the night. She is a total joy to both of us.
Finding the joy in caring
It's easy to misrepresent the amount of joy in this journey. It's hard to talk about the difficulties and still convey how much your heart bursts with the delight and privilege of caring for someone you love. It's a choice. We choose to care and wouldn't have it any other way. But a little bit of support eases the stress, the workload, and the exhaustion. It allows a daughter time to relax and enjoy her dad's blue eyes warmed by a smile. She can notice how happy her father is, which is the most important thing in her world.
As a little project, Dad and I planted cherry tomatoes in the conservatory. The first tiny tomato turned crimson red yesterday, with several more starting to blush pink beside it. I wondered how many days before they'd all be ripe enough to eat.
Then Dad reached across in front of me, grabbing the crimson fruit from its stem and popping it into his mouth. "Good," he muttered as a trickle of juice escaped across his bottom lip and ran down his chin. His face broke into a smile, and his blue eyes twinkled.
That is why we care.
The information presented is solely for educational purposes, not as specific advice for family or qualified caregivers. Please consult with a professional who can apply best practices and appropriate resources to your situation.
NPS-ALL-NP-00748 NOVEMBER 2022