Blogger Jane Robinson Shares Life with Dementia in Memory for Two

By Jane Robinson, Blogger at Memory for Two

When my husband was diagnosed with dementia at the age of 58, it was the week before Christmas 2017, and followed two years of tests and assurances that there wasn’t a problem. When the diagnosis was delivered, he went white and I cried, neither of which seemed to register with the doctor, who told us to wait in reception for a prescription to be issued and that someone would be in touch in twelve months’ time. We travelled home in silence, both of us lost to our own terrors, and tried to get on with our lives.

Christmas that year is a blur, I’ve no idea what we did, who we did it with, or how we felt, other than lost and frightened, but we got through it and moved into the New Year with our terrors still intact, and that’s how it remained for the next three months. I cried every single day while Ash remained tight lipped and pale, and what I remember is having no one to turn to, no one to talk to. We’d been given no information about support groups, strategies, helplines, nothing. In fact, it felt almost as though we’d been sent home to wait for the end to come.

A friend suggested there might be on-line forums and I did find one where I was frightened beyond belief. Every story seemed to be of horror and despair but there wasn’t anything else for me to read, so maybe that’s how life is when dementia enters it. I didn’t know because there was no one to tell me any different.

Eventually someone heard about us and sent word that he was in a similar situation to me but further down the line, and he would help if I wanted him to. It took weeks before I could acknowledge that I needed him, but when I went to see him the first thing he did was give me strategies which would help Ash, then he suggested I get in touch with Contented Dementia, a small charity with a different sort of outlook on the subject of dementia.

My son and I went on a two-day course and our lives were turned around. Here was a group of people who were positive about what could be achieved. They didn’t think the end of the world had arrived with that diagnosis, and I discovered that it was possible, if I had the right attitude, for me to make a difference to Ash’s life and, through that, to mine. Almost two and a half years later he is still able to do many of the things he used to do and the better I get at removing stress from our lives the more capable he becomes.

One of the first things I did when I got home was start thinking about writing a blog just to show others that there is life with dementia; that it’s not the end, just the beginning of something different. The blog is to help others in my position realise that there are positive aspects to this situation, but also to let them know they’re not on their own. My blog posts aren’t all positive because life itself is never all positive and it’s important to let people know it’s ok to have a bad day. So when my life isn’t going according to plan that’s what I write about and, interestingly, those are the posts which seem to have the most impact. People want to know that others struggle sometimes, but they also want to know that there is a way out and positive thinking can have a positive impact.

About the Author

My husband and I met at school; I was 15 and he was 17 and when we got the diagnosis, we’d been together forty-one years and married for thirty-five of those years. We have one son who is nearly thirty-three and he has been a star throughout all of this. He comes to stay so that I can have a break, he’s on the end of the phone if I need him, and as a family we’re working through this together. Friends have also been amazing, and we haven’t lost a single one since the diagnosis, so support is there in many forms. My background is in childcare and, as I’ve gotten further into all of this, I’ve realised that there are many similarities between creating the right environment in order for children to thrive and doing the same for my husband. I’ve also realised that there is something to be learned from every situation we find ourselves in, good and bad. Luckily, I’m a practical person and if I think there’s no way around something, I find a way through it which has helped. We can’t avoid what’s happened to us, but we don’t have to let it overwhelm us.

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2 Responses

  1. Very interesting and learning about such a life changing disease is necessary for everyone.

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