Reflections on Dementia

Dementia is one of those illnesses that makes us all feel a little awkward. How will we cope? Should we have noticed sooner? Will she forget my name? These are just some of the million questions that ran through my mind when my nan was diagnosed with dementia. She has Parkinson’s and was increasingly forgetful, so it wasn’t a huge surprise, but there’s something a little more final about dementia. One of the kindest, most loving people suddenly had another thing that couldn’t be cured. Another thing to snatch away a little more of her, making even the basics difficult. Every day presents a new challenge for her, a new frustration that can’t quite be explained because the activities that none of us even think about are now a little less simple.

   Some days are filled with a gloominess because this is ‘it’, others involve just plodding along with the routine until it’s time for bed. ‘How have you been today?’ ‘Bored’ is the usual response. The worst thing is that you can never be sure if this is because she is able to do less, trapped in a body that isn’t quite up to it, or because she has simply forgotten an afternoon with her sister or a shopping trip. And then there are those wonderful, golden, heart-breaking moments of total lucidity, a stray memory dragged out of the recesses of the mind by a favourite song or visiting a familiar place. A Nat King Cole record on the radio or an old holiday destination on the television.

     After conducting interviews as part of Yma’s evaluation of Marie Curie’s West Glamorgan Dementia Service, I know this is not a unique story. For those of us without dementia, it is a pretty scary prospect, but we can often overlook the fact that a diagnosis is not the end. On the contrary, it is the beginning of a new phase in life which is increasingly common as we all live longer lives, surpassing our three score years and ten. A new phase for the person with dementia and their loved ones who, we must remember, also ‘live’ with dementia as their lives are upended by new caring demands. There’s a whole host of things to get your head around-medication, entitlements, finances, new routines, and time pressures. It can be 24/7, with no let-up, no holidays or sick pay, and, for many people, no one with whom they can share the burden. The phrase ‘unpaid carers’ obscures a whole group of people just about managing on subsistence funds, whose vital work takes a little pressure off stretched social care services, all for their loved ones. There’s often no question of the alternative (residential care).‘He’s my husband, I promised I’d keep him at home’, ‘she looked after us as kids, now I’m returning the favour’, ‘only we can look after him properly’.

    In my nan’s case, my mom has been able to step into the breach, with support from the family. But she will be the first to admit that it is hard, being constantly on call and rarely able to properly relax. It’s tiring and, until you’ve seen someone in that position, where there is no ‘weekend’ and holidays have to intensively planned well in advance, it’s hard to appreciate the challenge. I have heard this same story from every primary carer I spoke to during the interviews for the Marie Curie project. Even with family support, caring can be an isolating experience with all spontaneity snatched away and the considerable pressure of responsibility for another human being who, unlike a child, is an adult used to making their own decisions. The overwhelmingly positive feedback about the Marie Curie service is understandable once you know first-hand what caring means. Giving back a little time, sharing a small bit of the load, it is all of incomparable value when you don’t have these things freely available.

    Being able to speak to these carers and knowing a little of what they deal with, I have found the Marie Curie work to be the most fulfilling of all our work at Yma. The support offered has clearly had a transformative effect on the lives of carers and those being cared for. It is impossible not to be touched by those who have found new hope in being able to reclaim a little control of their own lives. And yes, there have been some terribly sad stories, that will always be the case when working with people who are striving to do their best by their loved ones. But in this Dementia Action Week, when we are all encouraged to become alert to the signs, it seems all the more pertinent to be involved in work that is having positive effects on the lives of those who are often overlooked.

For further support:

Care and Respite services for Dementia (mariecurie.org.uk)

Alzheimer's Society (alzheimers.org.uk)

Herbert Protocol | South Wales Police(south-wales.police.uk)

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