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.
If you would like to get this blog straight into your inbox then click on the 'subscribe' button and wait for your verification email which you will need to reply to. If the verification email doesn't appear you can let me know by emailing me at memoryfortwo@gmail.com.
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.
If you would like to get this blog straight into your inbox then click on the 'subscribe' button and wait for your verification email which you will need to reply to. If the verification email doesn't appear you can let me know by emailing me at memoryfortwo@gmail.com.
Comments
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
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.
Over that now, thanks to you I am now building in time for me, given new purpose by your words. Thank you Jane!
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.
Thank you so much for your wonderful positive insights. I work for a Charity called Dementia Adventure and I would like to signpost people to blog. Would you mind if within our training I create a slide that mentions you and maybe a quote from your blog? I think so many people could benefit from reading your wise, kind words.
Keep up the fantastic work. I wish you and Ash all the very best.
Debbie
thank you so much for your lovely words and I'd be very, very happy for you to signpost people to the blog in any way you want. In my opinion we're all in this together and anything that can help us find our way through has to be a bonus.
If I can help in any other way just let me know.
Jane
My father who is 70 has been told he may have early signs of dementia but since then nothing else has happened. My mother has tried getting the help, surely my father needs to be properly tested / diagnosed to see if he does have early stages of dementia (if this is possible). My mother is finding it really hard at present. My father always seems to want to go out no matter what the weather is like. (This is not good for my father as he has other medical conditions, and catching an infection could mean him going back into hospital). My mother is currently trying to arrange doctors appointments?
My father has also got obsessed with my mother and wants her with him all the time. (Sorry if this sounds strange) like will not go to bed without her, my mother has to get into bed first.
If anyone has any ideas what my mother can do to help that would be really grateful.
Kinds regards Lisa Jones
none of what you've written sounds the slightest bit strange. Once dementia enters your life everything is slightly 'off' and eventually you forget what normal life is.
A diagnosis is important in order to get support from professionals but makes no difference to anything else. what your mum needs is strategies to help your father cope as most things are down to him feeling out of control and frightened.
One of the best books I read re strategies was 'Contented Dementia' by Oliver James. It changed our lives overnight and saved my sanity at the same time.
One thing to consider is that your dad might be frightened of waking up to find he's on his own because then he won't know what to do. Ash often woke in the middle of the night not knowing where he was. He would lie rigid with fear until I talked calmly to him and then I could feel him relax.
So I'd recommend Contented Dementia but also 'Somebody I used to Know' by Wendy Mitchell who was diagnosed with dementia at 57 and in addition to those I'd have a look at Teepa Snow on Youtube. This is just one of her videos but there are lots more to choose from https://www.youtube.com/watch?v=pqmqC-702Yg.