So you don’t forget me…

I’d just finished visiting mum after a particularly difficult family meeting which was mediated by a care lead of mum’s residential home. The same care lead and I bumped into each other afterwards and she asked how mum was during my visit. I spoke about how mum had been and that she’d eaten about half her lunch, seeming sleepy. However, when I’d presented her pudding, she’d brightened and ate the lot heartily. “She has a very sweet tooth,” I added, grateful that the lady was interested in my visit with mum. “Oh, haven’t they all,” she said glancing towards the living room where residents were seated around the edges.

I felt dismissed. More than that, I felt mum was dismissed. Her lifelong identity, the sweet tooth I knew she’d had all her life was dismissed. No, even more than that, in one sweeping statement, every resident had been dismissed. I had really struggled in the meeting, which was to deal with outstanding issues after I’d submitted an official complaint regarding mum’s care. Upon reflection I wish I’d had the wherewithal to respond appropriately to her comment at the time, but emotionally exhausted I waited until later to pick apart why I’d felt so deflated and dejected at that four-word reply.

It’s this kind of language that speaks volumes about the values and philosophy of a care service. Such words may be missed at first, but once you become aware of it, you see it way too often and it hurts, driving disconnection and unbelonging. Attitudes like this pervade cultures, institutionalise residents and staff alike and with every utterance, say verbally and non-verbally that you don’t matter. This is not person led, nor person centred, this is institution led and system centred.

Being dismissed is a form of rejection. Rejection is one of the most painful human emotions we can experience. It lights up the pain response areas in our brains as much as a mortal wound. It is based in our need to survive, the chances of which are increased by feeling like we belong in the tribe. Once we feel like we don’t belong we take measures to cope with that pain. This may present as behaviour or communication that is bent on fighting for change, or a person may try running away, to find a way out. Or, they may shut down, go inwards, dissociate and find it increasingly hard to engage with the people and world around them, essentially giving up.

I remember visiting my grandma who lived with dementia in the last year of her life. I took my daughter to meet her great grandma for the first and only time. It was wonderful to see them connect, grandma showing an interest in her great grand-daughter, giggling and curiously squidging my daughter’s pink bog eyed buggly silicon toy together. They both shared a wicked sense of humour. It was a joyful, heart burst moment.

On one of our other visits over that few days, grandma called my daughter back to her as we were about to leave and presented her with one of the angel figurines from her Lladro collection. As she handed the treasured piece to my daughter grandma said to her, “so you don’t forget me … ” It was a profoundly touching moment that stays with me. I think all of us would like to be remembered after we die, but I think that becomes more keenly felt when we are prone to forgetting more than usual due to the cognitive decline associated with dementia. I think it is painful to think we are forgotten or dismissed after we die, but it is more painful feeling we are forgotten or dismissed when we are alive.

So, to everyone who goes the extra mile to validate rather than dismiss; to exercise compassionate curiousity rather than judgement; to welcome and embrace a person and all that is dear to them rather than reject by behaviour or careless words; to those who culture belonging and personhood and scaffold a person’s identity; to everyone who gives a person every opportunity to feel that they still matter, thank you, you truly make a difference.