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Alzheimer's lifestyle dementia brainhealth riskfactors research

Alice Ashwell

As she became detached from the stays of time, Mum came to epitomize 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.

Alice Ashwell was a caregiver for her mother, Elizabeth, who had dementia. Located in Cape Town, South Africa, she created a Facebook page for dementia caregivers, Dementia Connections SA, and shares helpful information about dementia on her blog.

My mother, Elizabeth, passed away last year after living with dementia for about 15 years. Mum 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 little 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; 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. It also meant accepting that I needed to enter her reality, rather than insisting that she conform to mine. For example, I realized that my natural but unhelpful tendency to correct Mum just upset her and undermined her confidence. It was 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 now recognize that many of the behavioral problems we think are caused by dementia are in fact triggered by our own irritability and impatience, which our loved ones 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.

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 learned 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 epitomize 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 and involved family, music, nature and closeness.

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.

This article originally appeared on unforgettable.org and was adapted for Being Patient

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