‘How I learned about dementia’

christina-and-her-mum
Christina and her late mum Hazel

Why did I set up Dementia Help? I’m a writer, editor and published author with 25 years of media experience. My second book, Dementia Care: A Guide, was published last August. I’m the Online Editor for The Alzheimer’s Show website and I work with a number of clients specialising in dementia and elderly care, including Re:Cognition Health (award-winning brain health experts) and SweetTree Home Care Services. I’m also a Dementia Friend and have received specialist dementia training courtesy of SweetTree. I speak about dementia at The Alzheimer’s Show and have given talks to company employees struggling to balance their busy lives with caring for a loved one.

But those are just credentials. The most important bit is my personal experience. I cared for my late mother, Hazel, who had vascular dementia, for almost a decade. She was first diagnosed in 2009, though I suspect she’d had dementia for approximately two years before that. When she was first diagnosed, I knew very little about dementia. I had no help or support. A scan confirmed the diagnosis and her GP prescribed medication to help manage the symptoms. After that we were very much on our own. Getting mum to remember to take that medication (and in the appropriate dosage) was just one challenge. Many other challenges followed over the next nine years. I learned a great deal.

At first, mum lived more than an hour away from me. We were separated by the M25. She lived in Essex and I lived in Surrey and worked in West London. I had one family member providing occasional (and unreliable) support. At first, I selfishly wondered why this had happened to me. I had a great job as Editor-in-Chief of Women’s Running magazine and was trying to build my career. I wanted to lead my own life. But as time went on, I realised that mum was far more important than my career. Just as I hadn’t asked for this responsibility, mum hadn’t asked to be diagnosed with dementia. As her confusion grew and her mood swings became increasingly frequent and unpredictable, I realised just how frightened she must have been.

You and I have choices. We wake up every day with a purpose. Even if we don’t like our job or our lot in life, we have a focus. A list of things to do that day. Imagine waking up not knowing what you have to do. Imagine wondering whether you’re working, retired, or feeling unsure about what stage of your life you’re at; whether or not your husband is dead or alive or whether your kids have left home. This happened to mum frequently. Mum would call me and ask if she needed to be anywhere or do anything that day. Of course, I never let her miss appointments and my memory became her memory. I took her to every appointment and always made sure she was where she needed to be. But she felt frustrated by the fact that she had to rely on me for so much. I tried to make out it wasn’t a big deal. But in reality it was very hard for both of us.

I wish I’d known then everything I know now. Dementia is like a roller coaster of emotions. You’re facing the daily challenges of caring for the person and keeping them safe, while grieving for them as they change and fearing for the future. It’s important you know you’re not alone. Someone else understands. Whatever you have experienced, or are about to experience, someone else will have been through the same thing. I will be sharing my experiences and encouraging others to do the same, in the hope that you find it useful and perhaps even comforting.

0 thoughts on “‘How I learned about dementia’

  1. My Mum was diagnosed with Vascular Dementia about two years ago, I am unable to have a conversation with her anymore and just sit in her chair in silence, when I go to see her the first thing I do is put the TV on for some sound. I feel sad leaving her in the Nursing Home but know it’s the best place for her. She is a very intelligent Mum but I don’t want to test her or question her as feel this frustrates her. What advice do you have for me so when I visit it her, I can keep things upbeat but not frustrate her???

  2. Hi Matt, firstly I’m very sorry to hear about your mum. I had a similar situation with my late mum and all I can tell you is what worked for me. When my mum reached the stage like yours where it was very hard for her to communicate or talk without getting frustrated, I used to encourage short conversations that didn’t involve her needing to remember anything. I stopped asking her what she had for lunch or what she had been doing earlier in the day, as she couldn’t remember and would get annoyed. Instead, I focused on the present moment. For instance, I would take a magazine in to the nursing home, flick through the pages and ask her opinions on some of the clothing being worn by celebrities or models. She liked clothes. I’d ask her who was the prettiest woman in a photograph… I’d ask her to choose her favourite dress… she also loved cats so I bought her a cat book and we would leaf through it and she would choose her favourite cat. In other words, all of the comments she made were opinion based – no right or wrong answer, just opinions. I also used to tell her brief things I’d been doing, but would keep it short. Such as: ‘I went for a run today and it was lovely and sunny’. Not too much detail. Enough information to get a response. I know it’s hard, I hope this helps. Christina

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