DEMENTIA AND THE VALUE OF AN INDIVIDUAL

This is a very personal note, one that you may have no interest in reading, but I feel it will be cathartic for me to write so forgive my indulgence.

My amazing, wonderful, beautiful mum had dementia and very sadly died in 2023. It’s something as the saying goes, I would not wish on my worst enemy. It’s also something that’s been in the public eye recently with the news that action movie hero Bruce Willis has frontotemporal dementia. Dementia is no respecter of wealth, culture, gender or increasingly, even age.

I used to think of dementia as being forgetful about going to a room and not remembering why you went there. Forgetful of someone’s name, eventually even forgetting the names or relationships with loved ones. If that was truly how dementia presents itself, I would not be writing this note and wouldn’t have felt so desperate since Mum was diagnosed.

Dementia is different for each person afflicted and there are many different types and subsequent levels of impact that are reached more quickly in some cases than in others. Today one thing is certain; there is no cure, there is no magic pill, no diet, and no exercise that can reverse the insidious creep of dementia.

A description I heard recently from someone with dementia is it’s like having Pac-Man in your brain, it’s rushing around eating brain cells and there’s nothing you can do to stop it. This was how the lady in question explained it to her grandchildren and it gives a clear representation of the impact and fears that a diagnosis of dementia can bring.

My mum knew she had dementia and kept asking why she had it, what had she done to get it and when will she get better. At the time, knowing that she knew she had it almost made things harder to bear as there simply aren’t any reassuring answers that could be given. My mum would ask the same question repeatedly, not because she wanted to but because she didn’t remember the answer. She’d check dates on the calendar and be confused about what day of the week it is each day or the relationship one day has with another. She’d wake 6 or 7 times each night and not remember where she is and ask when it’s time to go home.

As I said earlier it isn’t forgetfulness because it’s not the biggest issue in the world to answer the same question 10 times. Other symptoms you don’t hear so much about are when she violently recoils from sudden noises, if someone drops a spoon for example she leapt out of her chair. My mum was far more physically fragile than she was a 12 months before, she’s lost 15 kilos despite only being 70 kilos a year ago even though she probably had a bigger appetite, especially for sweet things than before.

Some people with dementia respond aggressively or overly robustly to innocent suggestions. My mum had much less patience than she had before. Waiting for a coffee to be made, for someone to bring over a sandwich in a café, a meal in a restaurant – I think because the concept of time is far less tangible than it is to people without dementia five minutes may as well be an hour. My mum can be very stubborn and also very indecisive, strong-willed in some areas and uncaring in others.

For my dad as a primary carer, it was hard. For him, his wife of 56 years is there but not, they are husband and wife but carer and cared for. Some of the things my mum would say were, unless you understand a little about dementia, unkind, and some of the things she would accuse my dad of were upsetting. Whilst we knew it’s dementia talking it hurts at the time, the words when overheard by others lead to raised eyebrows or felt they need to be explained.

For him, getting up six times a night was exhausting, having to settle, calm and then be awake and alert the next day is tiring once more. It’s a feeling of constantly being on edge, waiting for the next thing to happen, the next issue to be dealt with, the lack of support likely comes as no surprise given the state of our economy and the tremendous pressure the health service is under. Dementia isn’t immediately life-threatening, so it doesn’t get the funding other critical care conditions get. Once you have the diagnosis and the doctor prescribes a cocktail of pills that’s pretty much it. A yearly check-in seems to be about the most that can be expected.

Thankfully we discovered a local dementia drop-in centre that my mum went to once a week which gave my dad 3 or 4 hours of respite, or at least to catch up on the things it’s harder to do with my mum at home. This is a privately ran business so of course needs to be paid for and has to come out of their fixed-income pension. Whilst it proved to be invaluable, every week my mum isn’t sure she can go, worried the night before about being there and being away from my dad, and worried about a million things that wouldn’t enter my mind or yours. So, whilst it is so helpful, it also created problems of its own.

My mum has done so much for me and my sister, been an amazing wife and partner to my dad. Watching her smile when I showed her photos of Suzie, the beloved dog she had, and sharing photos with her of my children as babies (now 13 and 16) brought her joy and reinforced how much she is loved. Talking about her parents, and sharing memories with her made her happy, walking and holding her hand as she did mine as a child made her feel safe. Finding ways to make her laugh again was as precious as finding a nugget of gold.

My mum is and always will be the most wonderful person I know. She is my mum and for that, I am eternally grateful. We don’t know the true value of someone until they aren’t there. In our busy lives it’s sometimes hard to find time to spend with our families and loved ones. In our desire to be sustainable, we must reflect upon the levels of empathy within our society. In the design and function of our buildings, towns, and cities we must accommodate everyone no matter what stage of life they have reached.

We often find our attention drawn to the ‘workers’ in our cities and how to reflect their needs in the buildings we design. There is nothing wrong with that, but wouldn’t it be more inclusive to think about everyone in how we develop our transport systems, our streets, our shops, and our restaurants?

People are always people, the way someone is today is not the way they were yesterday or how they will be tomorrow. Empathy is about developing an all-encompassing approach to society; it’s about bringing support to those who need it when and where they need it.

In memory of my amazing mum who is always in my thoughts and in my heart.
Irene Glenda Phipps 31 August 1946 to 11 September 2023

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