Dementia Days: Strength in Managing the Emotional Burden
We never know what a day will bring or even if there will be a tomorrow so what could be better than waking to a new day with the freedom to face it as we choose?
At the time of writing this post I had seen 25,824 days; a fair few of which have been noteworthy and a handful even life changing but the rest were usually dominated by obligations or filled with anxiety about what might happen.
I have spent plenty of those days in that indeterminate world where the threat of mental health issues lurks. Where the stress of life causes changes in your emotions, thinking and behaviour. Where simply getting through the day takes a mammoth effort because there is no energy left to tap into. I learnt that it is sustained periods of stress where fatigue gives way to sheer exhaustion that pushes me into the danger zone. Tina’s dementia is a good example; it was years of constantly changing challenges combined with the threat of the unknown and the weight of the responsibility that I placed on my shoulders that nearly broke me.
When I reflect on those dark days, I realise that what prevented me from breaking and what energised me to be there for Tina every step of the way was how I faced each day despite knowing the eventual outcome and the apparent futility of my efforts. Sharing how I stay motivated may arouse in you some adjustment pertinent to your life that helps you to face each day with optimism.
Following Tina’s diagnosis of early-onset Alzheimer’s disease, it became my responsibility to escort her on every step of her final journey, and my goal was to keep a smile on her face as she walked along her tragic path. It was my decision—it was what I wanted to do, what I needed to do, and it was nobody else’s business. Having an agenda that I set for myself made waking up each day something to cherish. It was a game changer for me.
Every moment of every day, we are bombarded with carefully staged images and cleverly worded messages designed to influence our desires, priorities, and decision-making. It feels like an unrelenting battle for the time, energy, and money remaining after we’ve contributed to the society that we need to survive—an attack on our small opportunity for individuality and freedom. I admit to willingly succumbing to those influences that suit me, but fortunately, life has knocked a little sense into my head, and now, I mostly ignore the bombardment. Instead, I look for exemplars in my immediate surroundings for guidance, inspiration, and motivation. I try to focus on people and events that help me realize the goals I have set for myself and ignore those that attempt to influence how I live my life.
When Tina and I got together and our life gained momentum, so did our levels of commitment, leaving less time and energy for ourselves. There was always something else that needed doing—either because someone expected it or because it was part of some conventional behavior. It became clear that the expectations of others and the sense of duty we imposed on ourselves needed regulating, so we made changes. We took back control of our lives by deciding which obligations were essential, which were important, which were fun, and which were simply the expectations of others, and we began setting our own agendas. After all, which is more selfish: protecting your own time and energy or demanding the time and energy of others?
The change was both empowering and enduring, but it wasn’t a smooth ride. People were initially disappointed, but they adapted. Peer pressure was constant and existed in every corner of our world, but being able to choose how we responded to it had a huge impact on our ability to balance the demands of our life.
Earlier this year, I took two of Tina’s caregivers to one of the best restaurants in the country to celebrate my 70th birthday. The food was so amazing that it left me speechless and grinning like a fool, and the service was subtle yet highly effective. The tour of the kitchens and other areas by the Executive Chef was an honor not afforded to many guests, and spending 20 minutes talking to the celebrated chef, Raymond Blanc, was a privilege and a delight. Overall, it was a stunning experience, but what made that night remarkable and that day unforgettable was being able to sit back and watch two very special and humble ladies meander from one amazing moment to the next. For me, happiness wasn’t found in sampling the best, but in witnessing two of the best being transported into a wonderland for a few hours.
We all strive for happiness, but what is happiness? I’ve chased pipe dreams and, of course, never found happiness there. For me, happiness seems to be a sustained feeling of contentment and inner peace rather than a temporary result of external pleasures. I suspect that at some point, I subconsciously drifted towards focusing on what truly made me happy and neglected what didn’t. If I had consciously made that transition, I might have woken up to many more days filled with joy and optimism.
What would be the joy of waking up to a world without people? Yet, people are often the elephant in the room when we talk about the beauty of a new day. Of course, there are those we need to protect ourselves from—people with premeditated intentions to do harm, and those driven to make bad decisions by hardship. As for the rest, our varied opinions and affections dictate our attitudes toward them.
I admire people I find trustworthy and reliable, and I quickly distance myself from those who lie or treat me with contempt. I respect people who do what they say they will and quickly discard those whose words and promises are empty. I don’t care what people believe, as long as their actions are true and harmless, though I admit I haven’t always suffered fools gladly.
For example, the most uncomfortable place for me is the comments section of a community Facebook group. It’s often difficult to find a positive or even balanced comment. Everything seems like an attack on some part of society for not performing, backed by arguments rooted in wishful thinking and with little regard for reality. Shame on me! It’s not my place to criticize, but to empathize. I am the lucky one, with the experience and understanding of the actual challenges involved in delivering services or implementing change. Without that insight, what would I base my opinions on? Of course—what was fed to me by those wishing to control my thoughts and behavior!
Learning to understand what drives people’s actions and opinions has removed swathes of irritation and doubt that would otherwise have dampened any new day.
Life is hard work—physically demanding and emotionally draining—but it should also have its rewards. I believe we can take control of enough aspects of our lives to make the prospect of waking up tomorrow an exciting one. For me, that involved discovering what truly matters and taking action to protect enough freedom for myself. Identifying where my genuine satisfaction and happiness reside brings me joy and peace. Learning to maintain perspective amid the bombardment of external influences and developing tolerance toward others has helped protect my sanity.
I acknowledge that my relationship with Tina has made figuring out how to walk this path called life incalculably easier, but it was still not effortless. It took hard work, difficult decisions, courage, facing reality, belief, humility, and the love of unassuming heroes.
Even if you are traveling alone and are exhausted from living life in survival mode, I believe we can still choose how we face each new day. Separate the wheat from the chaff and embrace all small wins or moments of clarity. Look again in your immediate environment for that unassuming hero who is waiting to support you if only you will let them. Start to take back control of small parts of your life, and waking up in the morning will always be a pleasure.
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