Of loss & love – reflecting on dementia

Has your life been affected by dementia? Are you in the early stages of the condition, or are you the care-partner of a loved one with dementia? An attitude of acceptance and a practice of mindfulness helped me to transform the experience of my mother’s dementia journey from a story of loss into a story of love.

Dancing with mum

Of loss & love – journeying with a loved one living with dementia

It came as quite a shock to me at our last Homeowners AGM to hear that the average age of residents in our suburb is 64 years. Notwithstanding other reasons for our suburb having a larger than average older population, we know that the Baby Boomers are ageing, and that people are generally living longer. Related to that, we also know that significant numbers of older people are developing some form of dementia.

What is dementia?

Typically, dementia erodes a person’s cognitive faculties – their mental processes of perception, memory, judgment and reasoning. Most people living with dementia become increasingly forgetful, disorientated, and dependent on others. There is currently no pharmaceutical cure, and dementia is generally considered to be a terminal disease of the brain.

A dementia journey

My own experience of dementia was a fifteen-year journey with my mother, who passed away a year ago. She had always been my ‘wise woman’, so I really battled with her declining mental capacity. However, over that long period, what had initially felt like an unmitigated journey of loss and frustration, unexpectedly developed into one of the most precious periods in our relationship.

Although by the end of her life mum was no longer able to speak, dementia did nothing to diminish who she was in her soul. In fact, she became even more loving and expressive than when she had been of ‘sound mind’; and I continued to benefit from her wisdom by observing her way of being in the world, even though she could no longer give advice.

As mum’s dementia progressed, I embarked on my own journey, learning to accept what was. To start with, this meant accepting the fact that she wasn’t going to get ‘better’. More importantly, it meant accepting that I needed to enter her reality, rather than insisting that she conform to mine. For example, I realised that my natural but unhelpful tendency to correct mum just upset her and undermined her confidence. It was much better for both of us if I simply slipped into her world, where my identity could morph freely, providing her with whatever relationship she needed at that time – daughter, mother, sister or friend.

As mum’s cognitive faculties declined, she became far more emotionally sensitive. I have come to understand that the behavioural problems we think are caused by dementia are often triggered by our own irritability and impatience, which they sense. So if I wanted to spend quality time with mum, it was up to me to create an emotional environment in which she felt safe, calm and loved.

A change of heart

My need to cope with mum’s dementia is one of the factors that led me to start a daily mindfulness practice. I became more aware of my own emotional state, and learnt simple techniques that enabled me to shift out of my habitual state of irritability and into a state of calm. Over time, this calm practice transformed my experience of mum’s dementia, and deepened our relationship.

In her later years, as she became detached from the stays of time, mum came to epitomise for me what it means to dwell in the present moment. Our times together became opportunities to experience the grace and intimacy of simply being present with someone you love, without needing to talk about ‘what we had done’ or ‘what we had planned’.

As she lost the ability to speak, mum invited me to experience the gentle art of communing, which I can only describe as heart-to-heart communication. Our times together were enriched by ‘in the moment’ experiences that touched our souls – family, music, nature and closeness.

Unconditional love

The dementia journey is hugely challenging, and provokes in us a great deal of frustration, fear and dread – understandably. But as much as dementia is described as a journey of loss, it can also become a journey of love and understanding. At times, love needs to be gritty and determined, at other times it will be sweet. At all times it must be unconditional.

As those who care, and whose mental faculties are still intact, it’s up to us to create an environment in which our loved ones with dementia will feel cared for and honoured, not only for what they achieved during their lives before dementia, but for the unique people they are. Through our emotional connections with our loved ones, we can help them experience a sense of closure and completeness, and to meet death without fear.