The Value of Communication…….

With an invisible condition such as Alzheimer’s and trying to live positively, we can end up becoming experts at appearing to be well – making dementia even more invisible. Some people simply accept the downward spiral but don’t want to talk about it or can’t talk about it – again, making dementia appear invisible.

To me, that makes it even more important to talk to those around you. So many supporters of those living with dementia have written to me about their loved ones or the person with dementia not talking, thus making it hard to understand how they feel or how they can help. Some are even in denial about the actual existence of dementia itself – both the people with dementia or their loved ones…….this can make it really hard for a couple, especially, to come to terms and adapt to living with dementia.

The clinical world is not very good at knowing how to talk to us post diagnosis. They often put a negative slant on the diagnosis which doesn’t help us to see that there are things we can do to help us to live as well as possible. This can be made so much easier if you and your loved ones talk to each other. That way you can be there to support one another through the rough and the smooth.

Maybe start off with the small stuff and the big issues will follow……
Yes, it’s frustrating for loved ones when we repeat ourselves or get ourselves in a pickle, but it’s also frustrating for us, the people with dementia, to see how upsetting it is for them – how do you think we feel? Ask us! That goes for the reverse – people with dementia should be more willing to listen to their loved ones post diagnosis. It can often make things so much easier and can, believe it or not, bring laughter into the day, and we all know how good we all feel after a good laugh.

And what if it brings on the tears? Well, that may be what’s needed at that moment in time. Talking may make you a better team to cope with whatever comes your way….

If we get use to talking from the start, it must surely make it easier as the disease progresses. I hope my daughters think this, and if they don’t, I hope they’ll tell me…..it’s not just loved ones, but extended family and friends and any children around you…..if they understand and it becomes normal to talk about it, it may help them accept and understand what’s going on and how they can help.

Cuties courtesy of Google.......
Cuties courtesy of Google…….

You may never have been the type of people to talk in the past, but now may be the ideal time to give it a try.
I’m no expert in communication. Feel free to ignore if you think I’m talking rubbish…..All I know is to not talk will not make dementia disappear…….and talking will help prevent misunderstanding of symptoms and help all concerned understand the challenges we face and how they can help……
Life’s too short not to talk – you just never know what’s around the corner……

About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

5 thoughts on “The Value of Communication…….

  1. I agree with everything you’ve written in this post. Communication is everything. We might not like what is said, but how can we deal with it, if we don’t speak and listen? My mum, we now know, had dementia for quite a few years before she met a crisis and was sectioned. If only we hadn’t shied away from the word dementia, had faced it, found out what we could do to help, or even just listened to her and what she was feeling … xx

    Liked by 1 person

  2. You are right – it is so important to keep dialogue going. I think many people get caught up in fear of saying the wrong thing and then choose to not say anything at all. The phrases we use are important but sometimes I feel that the political correctness around language in dementia is adding to the pressure. I am of a mind that it is better to talk and engage in open discussion than to worry about how the contents of your conversation will be received.

    Liked by 1 person

  3. It’s because you had the heart determined to do somebody good that I am now holding the baton.
    I to sit the race out or even sleep through it under the duvet, but I have decided with lots of encouragement from people like yourself and Irene Jervis at Making Space, to keep on living well Just For Today and throwing some caution to the wind.
    It’s a whole lot better than dwelling on a future I may never have.
    So I will help someone communicate the positives but listen to their negatives hoping to do what my friend Wendy Mitchell and Irene has done for me in helping to turn around my negative attitude and choose to live.

    Liked by 3 people

  4. Words of wisdom spoken clearly. Worth more than any amount of money and other material riches. Every word was a drop of wisdom to the world if they listen and a blessing to those of us who can use these golden words to guide ourselves and nd teach others.

    The incredible knowledge and experiences freely given are your gift to the world. By willing sharing them it is like dropping a stone of wisdom into the middle of a pond and the ripples are small circles at first but soon they stretch all the way across the pond some even over lapping when hitting the shore pushing the ripples there a bit further-even onto dry ground where it is instantly retained by a thirsty ground.

    This what you are giving the world. it may take time. Your words from experience so open, so true, the strength you have opening a closed door for the love of your family and love of human kind is amazing I can only imagine how much effort you put into your goals, this is what caught my attention at first thinking of the strength it must take. So trusting this I began to follow you online.

    Thank you so much. You have given me much comfort from sharing and helping me. Understanding a lot of questions no one could answer gave me some peace. Wondering about things I dare not ask because of the hushed nature of this issue answered by you is your gift to me and my mother-who has passed

    Believe this -your hard work and efforts will grow way beyond your expectations. You have waded into waters few even dare to dip a toe in.

    This letter ends with thoughts and prayers fro you and thanks that you are doing this. Continue as long as you can and help open the minds of people regarding myths and the way people with Alzheimer’s and Dementia are bundled all together as one entity. We are not. My hope is that others will discover this sight and receive the strength to speak out as well. So many are not lucky enough to have loved ones who care

    Love, support, open minds and being included as family to the end would give so much to those suffering these disease. Likely prolonging the fall too far into these places by daily reminders from others. Love and support because now the family understands these issues better and are less afraid.

    Thank you. I spread your experiences and e-mails with others and have learned so much.

    With the deepest respect and thankfulness
    Always thinking of you.
    Wendy Dalton
    Canada

    Liked by 1 person

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