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Having a really difficult time

Blownaway

New member
Dec 7, 2020
4
0
Hey all, diagnosed with early onset Vascular Dementia in September, lam 60. Having a really difficult time and would like to chat
 

nae sporran

Volunteer Host
Oct 29, 2014
8,718
0
Bristol
Welcome to the forum @Blownaway. Feel free to chat away about anything you want. There are members who have dementia and many who care for someone with dementia, so there's always someone around who understands and can support or advise you.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
11,286
0
Yorkshire
hello @Blownaway
a warm welcome from me too

a new diagnosis must be pretty overwhelming, so I'm glad you've found your way here as members are supportive and will help if they can at all
so do post with anything that's on your mind, at any time

if you would like to chat with a person in real time, maybe call the Support Line as the folk there are approachable and have a lot of knowledge to share
Dementia Connect support line | Alzheimer's Society

unfortunately many of the local services aren't available right now, but you may find something helpful using the Directory here
Find support near you | Alzheimer's Society
 

HardToLetGo

Registered User
Oct 10, 2020
45
0
Hey all, diagnosed with early onset Vascular Dementia in September, lam 60. Having a really difficult time and would like to chat
That's very difficult news, I haven't experienced a dementia diagnosis but know first hand the trauma of a life changing diagnosis, indescribable emotions. Take care, there are good people out there to help you deal with it including on this forum🌸
 

Dunroamin

Registered User
May 5, 2019
171
0
UK
Hello @Blownaway Yes it is difficult receiving such a diagnosis and realising the future is not going to be how you would wish it to be. I was diagnosed with Alzheimer's some time ago and have come through the initial stage you are now going through.

A lot depends on individual personality. Being the person I am I buckled down and attended to all the necessary things needed while I am still able. POA, updated will, a DNR (my choice) and so on. I get amzing support via the Alzheimers Society as does my husband. I have been tremendously fortunate to be able to backpack solo around the world for many years, worked in amazing places both home and abroad and lived life to the full. However, I still sat and wrote out a bucket list of things I still want to achieve and a ****itbucket of things i cant, or no longer, want to do. I completed the Manchester marathon recently and will embark of swimming a staged marathon next year. SAdly my balance has put paid to mountain biking.

My Xmas present this year is an aquarium which I am finding totally relaxing. Never be afraid to ask questions, be prepared to fight your own corner while you can and please get help and support. Negotiating the health system is a nightmare and not all health professionals are either helpful or supportive, or indeed particularly knowledgeable with dementia. (I am a retired medic, so feel justified in my comments.)

Grasp each day, turn everything into an opportunity, learn new skills and live in the moment. Keep posting
 

Seaholly

Registered User
Oct 12, 2020
113
0
I wish I could put into words how important and massively appreciated it is when people who have received a diagnosis early in the progression of dementia speak out. I wish there was a way, without sounding daft, or crass, to say that the more people out there who speak up and tell it like it is - the things that show there is life with dementia and the cr@ppy bits too - the less dementia will be brushed under the carpet and the more we, as carers now and as likely as not, future people with dementia ourselves will know.

The more accounts I read here, the more I am reminded of my own mum. Like so many others, she was one of life's 'do-ers'. She climbed in the Dolomites and the Julian Alps, as well as the Lakes in her younger days and as a teenager, went off hitch-hiking with her friends and stayed at Youth Hostels in the days when it was safe :) She was involved with the local church and Lady Farmers and a real hands-on mum too, who welcomed random friends of her children to stay in the holidays and always cooked superb meals. She was a Ninja Knitter (Arran and the trickier the better!) and loved crosswords and Sudoku. In short, she blows the theory out of the water that dementia only gets the people who don't keep their brains and bodies active!

As her daughter and now her main carer, when she started experiencing dementia, I wish every day that she had summoned up the courage to speak up and seek help years ago. There are so many things we could have done to help, instead of feeling hurt and confused by her behaviour. Dad died thinking it was somehow his fault :( because after 50 happy years of marriage, he suddenly found himself on the receiving end of her delusions. Had mum and dad known and understood more about dementia: what the early stages were, what they could do and most importantly, that there is the help out there and there are good people who share their first-hand experiences and help the rest of us understand, well, that would have been a gift greater than any other I can think of!

Fortunately, the way society views dementia is slowly changing thanks to people speaking up and sharing ideas and information.

So, please don't feel that dementia means you have nothing more to say, or to give. It means you need to be heard and we want to listen, to hear and to help!
 

john51

Registered User
Apr 26, 2014
292
0
Dunstable, Bedfordshire
I can still here the words echoing round my head as I heard the diagnosis. For the first 2 years, Talking Point was about the only support for either me or my wife.

Do come here and tell us how things are for you..often...the good bits the bad bits and the downright awfu bits.
You will feel very alone, but try to remember that you arent. You can come here and tell things how they are even when others are managing to get some sleep...someone will soon be along to reply.

You can say things here that you can manage to put into words for those who love you and are also struggling with your diagnosis and are trying to do the best for you.

Recently my wife and I moved from a 4 bed house that we couldnt really manage anymore, to a 2 bed apartment in a retirement village. Selling the house, particularly as COVID hit was awful and i found it it really difficult. Moving was worse. But we are here now and I love it. I have more confidence and can even manage to go out alone again to the public bits (before tier 4 shut them down)