What I wish you all knew…it’s very emotional

I came across this statement early in my carer journey. It spoke to me loudly, and became a constant and powerful reminder. 

That’s because as Mum’s mind, her cognition, has declined, her senses have heightened. She feels in ways that she didn’t before, when her brain was able to create distractions away from her feelings and emotions. 

I thought I understood this statement the minute I read it. It wasn’t till months and months later that, one day, I felt full body understanding – like the penny fully dropping – of what it actually meant through having been watching, observing, and really paying attention to the nuances of Mum’s moods, and the methods she would use to engage and, indeed, how she would engage. 

Emotions and feelings, however, are the elephant in the room in the care sector. Dementia is a tick-box exercise, and a serious condition that isn’t taken nearly seriously enough.

Yet when I speak emotionally, about the emotional reality of caring for Mum, and my passion for us all to get better at dementia, people approach me and tell me how moved they are and that they can feel me when I speak.  

It’s not just ‘the system’ that’s got a long way to go with dementia; it’s us in our communities as well. As carers, friends, families, and individuals, we are mostly uncomfortable with dementia, not sure how to ‘be’ with it. So we tend to judge our loved ones, demean them, ridicule them, turn a blind eye to them, take offense or take what they say or do personally, talk over them, or respond to them from where we’re at, not where our loved one is at. And that’s not good enough. We need to be able to meet our loved ones where they’re at.   

Often Mum is feeling things that I will never be able to comprehend, because I don’t know where she goes.

Sometimes she’s back in her childhood and she can be happy, sad, very homesick, or quietly content.

Sometimes she’s been over the veil with Dad, her granny, and other family members, and she’s reassured.

Sometimes she’s right here, right now, with an awareness that’s startling, articulating in a way that’s made me wonder sometimes if you can get better from dementia.

Sometimes she’s so confused and distressed that she’s not sure where she is, or what’s going on, or how to express any of that.

I have to be there, emotionally present, for all of it. As carers for someone with dementia, we have to bring respect, humility, compassion, and personal accountability to this role and treat our loved ones with the dignity and honour they deserve.

We all have our issues, we are none of us perfect, and for me this journey is one of mutual support through emotional release: I’m helping Mum prepare for a peaceful transition and she is helping me to become a better human being. 

When we start to understand how emotional suppression manifests, and acknowledge the significance that emotional load plays for the person with dementia, as well as for their carer, we will start to shift the whole culture and energy around caring for dementia from one of fear-based victim and martyrdom to one of heart-centred leadership, advocacy, companionship, strength, assertiveness, and, of course, love.   

We can keep exclaiming about how rife it is, or we can start to look at how we can get better at it. From a carer perspective, it is proving to be the most healing and expansive journey of my life.

P.S. Mum had been prescribed risperidone in August 2024 to help ease her paranoia. There were no follow up appointments, no check-ins to see how she was doing, no interest by the health professionals as to whether or how it was helping. I later discovered guidance suggesting that risperidone should usually only be prescribed for short periods in people with dementia and should be regularly reviewed.

Mum is no longer taking that medication. In fact, she is on no medication at all. And do you know what? The awareness that was being masked by risperidone has now been revealed. The person whose acknowledgement, love, and validation means more to me than any other, now has enough awareness to hold me, and through her messy dementia, her declining speech and ability to communicate, and the opening of her heart as her inhibitions have dropped away, hug me and tell me regularly how grateful she is and how much she loves me.

This is the privilege, the honour, the gift of caring for a loved one with dementia. These beautiful, precious, unadulterated moments of true love. Being appreciated and acknowledged by my mum.

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