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Living with dementia - a son's tale

iain fulfordOne of the curses of working within healthcare is that people automatically think you know everything remotely medical. I’m not a nurse, I’m not a doctor. There was a time when I was about 14 that I thought about being a doctor, but there was an obstacle – I really didn’t understand biology. What’s the relevance of this you may ask? Well during my somewhat eclectic career, I spent some time working with a well-known private care home provider. In that role, I was very fortunate to meet both people who were living with dementia, and the amazing folks that care for them. I’d written many articles about it, talked to the care homes residents who, on their good days, were the most intriguing characters with some amazing life experiences, and interviewed families about the impact.

My point is this… I knew about dementia. I knew the signs, I knew the symptoms, and I knew the devastating impact it has.

It was the little things I began to notice at first; asking the same question again, the odd repeated conversation, forgetting where she’d put things. Then over the course of a year or so, it became more and more noticeable. She’d appear vacant, or would stop listening. In groups, she seemed to slowly withdraw. Family members brought it up in conversation. My sister and I talked about it possibly being dementia, but I’d find excuses to justify her behaviour. We knew she’d had a TIA a couple of years before, so I’d put it down to that. “Maybe she needs a hearing test?” The results were fine. And then it would settle down for a while and we’d all carry on as if nothing was wrong. That happened a few times, and over the course of a couple of years we just put it down to Mum “being Mum”. We’d occasionally talk about it, behind closed doors, and then change the subject; the prospect too unbearable to give strong consideration to.

One day my Dad met me on the driveway, looking tired and frustrated. “I’m worried about your Mum. She seems to be getting worse. What do you think?”  The question hit me like a blow to the stomach. I could feel myself tearing up. As images flashed through my mind of the people I’d come across during my time with care homes. I had a glimpse into a potential future that, to be frank, I’d denied for a couple of years. I remember saying out loud, not meaning to, as I struggled to keep the tears from falling: “Its starting isn’t it. She’s leaving us.” We looked at each other for a second, my father and I, before we both burst into tears and just held each other. “We’ll figure it out Dad, I promise.”

Everything after that happened quite quickly. We talked to Mum about our concerns – not an easy conversation, and one I can’t really remember much about to be honest. But the next thing was to talk to the GP. A family friend, who knew my parents. I think that made it easier – she felt comfortable with Dr A. They went through the normal process, memory assessment clinics etc. And then we had an answer: mixed dementia.

My sister and I were sat on the bed in the consultation room, my parents sat on the chairs in front of the doctor. Mixed dementia? In a style true to my mother’s character, she had to be different, I thought. I knew about Vascular, and I know about Alzheimer’s, but I didn’t know much about that one. This was soon resolved – working in the NHS I have access to fantastic people, and fantastic materials. The next day I arrived home with books, leaflets, essays, you name it. We had a visit from a very helpful dementia advisor who put a lot into perspective. And so began my family’s education in dementia.

Since then, from Mums point of view, not much has changed. She takes medication to try and slow down the progression, and does her puzzles and her colouring to exercise her brain. She’s even using a Kindle, something I never thought I’d see. She’s not in any danger, she has good days and bad days, but overall she’s happy. Somewhat oblivious, but happy. And really that’s all that matters. At this stage, she’s fine. It’s the rest of us that struggle.

Dad bears the brunt of it. He lives with the repetition 24/7. And sometimes you can see when he needs a break. To start with he struggled to understand what was happening and how to deal with it, but as we’ve learnt to cope with things, he’s started to handle it better. One example from early on really hit home with him and became like a lightbulb moment. It was Monday, washing day at my parents, and whilst one load was in the washing machine, the other was sat in the lounge waiting to go in. Mum was mithering and kept wanting to go and check to see if the washer was done, so that she could put the next load in – Every five minutes she’d say “I’m going to see if the washing has finished” and Dad was getting more impatient. In the end it bubbled over into a row. Luckily I was nearby and straight away saw the issue – “She can see the next load waiting, Dad, so just move it somewhere else so it’s not reminding her.” Since then, I can see he pauses before he reacts, like you can almost hear him thinking “How should I handle this?”

Getting Dad support has been much more difficult. We’ve tried a few local support groups, As soon as we walked into the first one my Dad looked at me and said “Why are all these old people here?” He was right of course, Mums dementia at 66 means that she (and he) are a lot younger than many other people living with it or their carer’s. The second event was much worse, highlighted by the fact that they were having a Second World War themed party. A lovely concept, and as I looked through the glass door I could see that many of the people in the room had huge smiles on their faces. But that’s not my parents’ era. They grew up with the Rolling Stones and the Beatles. Not Peggy Lee and Vera Lynn. Ten or 15 years ago, when awareness of dementia was growing, then that kind of theme would be perfect, but those at the forefront of dementia care need to start thinking about the fact that the next generation of people living with dementia will not respond to the themes that are currently used. The other thing I’ve noticed is that, besides my immediate family, everyone else has fallen away. Since diagnosis, the friends my parents used to spend their days with, go to the theatre with, and out for dinner etc., have gradually disappeared into the background. It’s like the word dementia has frightened them off. Isolating my parents and in particularly my Dad even more. I’m actually quite bitter about that, because in the past my Dad has been there for people, but when it’s his turn, it’s down to his children to step in. Not that I mind at all – they’re my parents and I’d do anything or them. But just once I’d like one of his mates to call and say “Fancy a pint Poppa?”  Such is the stigma still attached to dementia.

And that’s where we are on our dementia journey, it’s not easy, but we’re muddling through as best we can. I know in my heart that the Mum I knew, that raised me, protected me, guided me, isn’t really there anymore. She occasionally puts in an appearance, and it feels like my heart is going to burst when she does. And for a brief and shining moment, there she is, this fierce, formidable and funny woman. But soon enough, she retreats back into her little bubble.

I go through all kinds of different emotions in any single day. That’s just who I am, but guilt is probably one of the biggest. Growing up it was guilt about not being myself, living some kind of lie. In my twenties it was guilt for the heartache and drama I’d caused by coming out as gay, and the disappointment I must have been. In my thirties, I imagined I’d be guilt free but I’m not. I worry that I should have done something sooner. If I’d spoken up, knowing what I knew, would we be further back in our dementia journey? Who knows? This evil bastard of a disease doesn’t follow a set path, each journey goes to different places and at different speeds. But I can’t help think that I should have done something sooner. If anyone reading this has any doubts or worries about a loved one, the one message I’d like you to take away from my long ramble is this. Do something. Speak up; The help is there. Yes its uncomfortable, yes it’s upsetting. But it could make all the difference.

You may have noticed as I’ve written this, that I’ve been very careful with the language I use. Not once have I said or referred to suffering with dementia. My mother is living with dementia, not suffering with it. One look into her sparkly blue eyes and I know that she’s not suffering. Yes she’s repetitive, yes it’s annoying. But I’d rather repeat the same conversation with her over and over again than never be able to have one again at all.

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