Monday marked the beginning of Dementia Awareness Week. CareTech Foundation CEO, Jonathan Freeman, kindly shared his thoughts on this issue close to the Foundation’s heart – but also uncomfortably, painfully close to his own heart….
My father died twelve years ago after myriad physical illnesses and conditions, concluding with vascular dementia triggered by a stroke towards the end of his life. My father had known physical ill health throughout his life and had coped amazingly, becoming one of the youngest ever headteachers of a comprehensive school at the time he got the job. My father could cope with physical illness knowing that he had his intellect. To lose his mental acuity was hugely cruel and it was clear that this was a fight which my father just didn’t have the heart to take on for any length of time.
I still miss my father hugely. However, and I hope you won’t judge me harshly for this, but after everything Dad (and my Mum, in caring for him) had gone through for so many years, his death was almost a relief. Following Dad’s death, I had just hoped that Mum would have an ‘Indian Summer’ with the opportunity to do all the things she’d not been able to do after years of caring for her husband. But that hope was a forlorn one….
At first, we thought Mum was still struggling with the grief of bereavement – she probably was. Then the GP thought it was depression – it probably was. But there was something else. Mum was struggling. First, I had to stop her driving her car because she simply wasn’t safe any more. Then, she became increasingly confused and forgetful. A couple of times, Mum even agreed to see her GP to check for dementia but was assured all was okay. None of us around Mum believed this, so I finally wrote to the GP with a detailed letter listing all of our concerns; the GP refused to talk to me but told Mum again that she was fine.
The critical point was when Mum went away on a short trip and told me after she got back that something had happened whilst she was away that had really shaken her up. Mum’s language had gone way beyond being a bit confused – she was barely intelligible. The change was so significant that I was – finally – able to persuade Mum’s GP to refer her to the local mental health service team.
Eventually – and I do mean eventually as the wait for an appointment was shocking – Mum was properly assessed. The trip to the hospital was one of the worst days I can remember. Mum did indeed have dementia – mixed Alzheimer’s and Vascular. The episode on the trip was probably a TIA (commonly known as a mini stroke) as there were clear signs of damage to the brain. And the dementia was pretty far advanced already (thanks a bunch GP – perhaps you might listen to family members a little more next time…).
Trying to explain to Mum that she had dementia was incredibly hard. Mum was – is – very intelligent, the first in her family to go to university and had been a successful teacher. A Head of Modern Languages who loved languages and linguistics – and now she couldn’t string a sentence together in her mother tongue. That is beyond cruel.
Dealing with a mother with dementia has been a slow and painful journey. ‘Death by a thousand cuts’ barely covers it. First, Mum didn’t recognise her grandchildren and explaining that to my kids was rough. Then she struggled to recognise her own brother and sister. And then she lost the ability to know who my brother and I were. And her verbal communications skills rapidly vanished. Today, she smiles at me, she knows I’m someone important to her but she couldn’t tell you who I am or what relationship I am to her. My older brother lives in Morocco and telephone conversations with Mum are now impossible for him. And when he flies over, it’s heart-breaking to see how difficult any form of meaningful conversation or engagement is between them.
The care home in which my Mum now lives is great – it’s not the same as being able to look after Mum myself, but her needs are just too much for me and my family to handle. So, I have to accept that relative strangers are looking after my Mum for me and that, however wonderful they are, they’ll never love Mum like I do. And I feel so guilty that my visits are so brief – because a two-way conversation is impossible but also because I often find it too emotionally difficult.
But here’s the real rub: for too long after the dementia really took a grip, I thought that the woman I visited every week wasn’t really my Mum. My Mum cared deeply about every aspect of my life and my family’s lives. My Mum loved us all deeply and was always there for us. My Mum wanted to know about everything we were all doing and was stupidly proud of us. But the woman I visit every week now doesn’t know where she is, doesn’t even remember my Dad to whom she was married to for 40 years, doesn’t know who her grandchildren are, and doesn’t know who I am. That tears me apart every time I see her. And I just kept asking myself ‘Where’s my Mum gone?”
However, my understanding of dementia is now thankfully much better having cared for a loved one with dementia for over five years now. I now understand that the person before me is, indeed, very different than she used to be – but she is still my Mum and always will be. It can be very hard to see, but there are still flickers of recollection of loved ones and deep memories of her rich life. And, above all else, this person before me is someone with emotions and feelings who demands and deserves respect and love. My Mum is still there – I just couldn’t see her. I just saw the dementia. I still hate dementia and what it has done to my parents – but at least I now know that my Mum hasn’t gone anywhere! I just needed to look a bit harder for her!
This Dementia Action Week, I urge everyone to find out more about dementia, to become a Dementia Friend, to learn the easy ways we can all support those living with dementia and to consider donating to support dementia research and campaigning charities. Dementia is a truly cruel condition – please do whatever you can to help those dealing with it and those working to treat or even cure it.