About Me

My husband and I have been together since we were teenagers and have been married for nearly 36 years.  Just before last Christmas (19th December - the date is indelibly imprinted on my brain) Ash was diagnosed with dementia.  This came as a huge shock to me but seems to have been apparent for a while to those who know us well.  I thought he was suffering from anxiety and depression, they thought it was odd that sometimes he recognised them and sometimes he didn't.  We really don't see what's under our noses, although looking back lots of things have now fallen into place and I think maybe, just maybe, I was in denial.

When this happens your whole world falls apart.  He was 58, I was 57 and we were looking forward to a part of our lives where we didn't have to work quite so hard, had time to spend with family and friends and could travel to all of those places we still needed to cross off our list.  I cried nearly every day for the first three months after the diagnosis but then I realised that life hadn't suddenly changed, it had been changing slowly and steadily over the past few years.  A diagnosis isn't the beginning of this disease it is a staging post.  In fact a friend told me that when a person is diagnosed with dementia they have usually had it for around five years already.

I found I couldn't tell people face to face and so sent out emails, first to very close friends then, when I'd got used to talking to them about it, to all our other friends and I was amazed at how many peoples lives have been affected in one way or another by dementia.  I was also amazed by the strength of support that came through in replies.  Not one person failed to respond and that has made things so much better than I would ever have believed.

I/we are now learning how to cope with a life that is very different to the one we envisaged but things are ok.  Who knows how long that will go on but I'm learning to live in the here and now, I try not to plan for the future and I'm learning to relax and not sweat the small stuff.

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Comments

Ann said…
Thank you very much, for writing this wonderful blog. I feel it so helpful for the partners, wives and husbands of those on this particularly difficult ‘journey’ of Dementia to read your comments. You’ve certainly helped me. My husband (also a retired Police Officer) developed Vascular Dementia after suffering several strokes during emergency heart surgery in 2016. We too have had our dreams and plans for the future, smashed to pieces, and so much of what you’ve said I recognise. But, you have such enormous positivity which I’m hoping to emulate, as we travel along a similar ‘road’. So please keep writing as I, for one, look forward to each and every new post.
Jane said…
Thank you so much for this. I started writing the blog to make me focus on the positive as sometimes, as you know, it's very difficult to do just that. While we were on holiday I was determined I was going to focus on us and not write but it really made a difference to how I felt and I found myself only remembering the bits which weren't quite so good. One's I restarted the blog I felt so much better so don't think there's much chance of me stopping it any time soon. It's lovely to know not only that this makes people feel better or helps others to look at things differently but just to know you're out there and know how I feel so please keep commenting. It really does make a difference.
Ann said…
That’s wonderful news that you’ll keep ‘posting’ Jane.

Also, you are so right to keep up those holidays, and travel as much as you can, whilst it’s still possible (don’t worry, that could be years for you yet!). Sadly, we are a little further down the Dementia ‘road’ and it’s no longer a viable option for my husband. But, we have some amazing memories of past travel, and we now both live everyday taking each moment as it comes and looking for the small things that make us smile. After two years of tears, anger and pain, this third year has finally seen us ‘turn a corner’ to a more peaceful period, and I’m so grateful for that.

Good luck, Jane & Ash. I’ll keep commenting....x
Jackie said…
I've just discovered your blog in the Journal of Dementia Care this month. It particularly caught my eye as my sister in law was diagnosed with dementia aged 56 about 8 months ago. My brother, her husband aged only 58 isn't finding it easy and I'm trying to help him which isn't easy when you live 250 miles away!
I'm hoping he may write a blog similar to yours as there doesn't seem to be a lot of help for young onset dementia sufferers. I look forward to reading more.
Jane said…
Hi Jackie, you're right there really isn't much out there to support Early Onset Dementia but, if you haven't found it already, then you might like to look at https://www.youngdementiauk.org/. I've found them really helpful. Contented Dementia Trust has also been an amazing place of support and I can really recommend their 2 day course. They were recommended to me by a friend whose wife was in the late stages of Vascular Dementia (diagnosed at 61) and the strategies were life changing for us. If you can't get on a course then there is a book of the same name by Oliver James which you can get either from their website or from Amazon. http://www.contenteddementiatrust.org/. please also feel free to give your brother my email memoryfortwo@gmail.com if he needs someone to talk to. This is a very lonely place to be and someone to let off steam to or ask questions of can really help. That goes for you to and I'm so pleased you found the blog. Just knowing there are people out there reading what I write helps.
Anonymous said…
Hi Jane, I’m fairly new to your blog having found the link on Young Dementia UK and I wanted to let you know how much I value your insight and positivity. I have been enlightened, inspired and comforted in equal measure. Everything you write about is relevant to me and I’m gradually making changes to become more equal in my relationship with my husband. Diagnosed with young onset Alzheimer’s at age 63 last September, his needs have consumed my every waking hour. His own insight has meant many long conversations about his situation, his medication, plus periods of gloom, particularly when the DVLA summarily cancelled his driving licence in Decemcer. His lifelong passion, cars, ripped away from him by this disease and a draconian standard letter.
Over that now, thanks to you I am now building in time for me, given new purpose by your words. Thank you Jane!
Jane said…
Thank you for this. It's so easy to be consumed by everything 'dementia' that sometimes we forget about us but our lives are changing and it's important for us to keep developing so that we're strong enough to cope with whatever life throws at us. I really believe that we shouldn't put our lives on hold because when this is all over we're going to need to be very strong and self reliant in order to survive the aftermath.
Carol said…
Hi Jane, I have only recently found your blog, can’t really remember how, but it is so helpful - thank you! My husband has Parkinson’s & dementia. I am not sure if we can call it ‘early onset’ as he was 71 when diagnosed 4 years ago. PD diagnosed 8 years before that - that felt early. As you have said, it felt as if our life had been ripped away from us. Our only granddaughter is in Australia and our last visit there was over 4 years ago and I can’t see it happening again. Another heartbreak. However your recent post about lists has got me thinking, I may be a lot older than you, unfortunately, but I will travel there, alone, when I can. When this awful situation we are in just now ends, I will have some life. Every day may be hard but I am determined to find some positives, reading your blog helps that. Carol x
Jane said…
Hi Carol, I think the thing I struggled with the most was thinking my life was over too and it really is only recently that I've given myself permission to think about afterwards. Sometimes we're so conditioned with dementia to 'live in the moment' that we hate to say 'but I want more than that'. Only when I let myself say that out loud did I really find it possible to stop being defined by Ash's dementia. I have a friend in Western Australia and although we've been out twice to see her the last time was 20 years ago. we always said we'd go back but never quite got there and that was one of the things I assumed I'd never do. That trip is however on my adventure list and I'm quite prepared to go on my own. Have also thought that if it's just me I could afford to go first class which really is something to look forward to! You will get to see your granddaughter and if you only have yourself to think about that trip will be very special indeed. have faith.
Marcia said…
Hi Jane, I wish to thank you for your wonderful writings here, all of your advice, and most of all your positive outlook and way of approaching life. I too am new to your blog, and have been reading it from the beginning. Saturday my copy of “Contented Dementia” arrived, and I am looking forward to reading it. My husband is 85, I am 63, and yesterday was our 30th wedding anniversary. We received his diagnosis of Mild Cognitive Impairment a few months ago, but I think he has progressed. We went through at least three years of arguments, silence and resentment, and very ugly times, with me thinking it was hypoxia, due to COPD. I am still in the read all I can place, but your positivity has helped me more than anything.
Jane said…
Hi Marcia

you have no idea how good your comment has made me feel. I really hope you find Contented Dementia as useful as I did but all I can tell you is that our lives changed for the better overnight the minute I began to use Penny Garner's strategies. I've read it three times now but never to the end. each time I get a little further into it (as far as I need to) and each time I learn something new.

good luck and please let me know how you get on.