HI,everyone this is new to me i do struggle to dot the i's and cross the t's so please forgive my lack of grammer, i was diagnosed in oct 2018 with mild vasculer dementia my 2yr journey to that point i can only describe as frightning i saw dead people in my home i got lost many times and had no idea how to get food, i would make myself a cup of tea then chuck it in the waste bin then spend however long looking for it, i used to try to make 2 drinks and put tea coffee suger milk all in one cup and give it to my guest then stand staring at the empty cup, i set fire to my kitchen, lots of things were descending into chaos, what i'm trying to say is dementia is the loneliest place in the world you cannot ask for help, you no longer know what it is you need help for, you cannot ask any one for help with something you've forgotten because that one thought can be gone in a second inside yourself it becomes so lonely fighting a constant battle with your own brain bless all you carers love you all
I'M STILL HERE !!
- Thread starter Robert igotdementia
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- vascular dementia
I don’t know whether to thank you Robert for reminding me as a carer what my husband is going through when I get so frustrated with his behaviour, or to cry for you and him and all of us really that are going through this terrible journey. I hope now you have a diagnosis you also have some real help, support and understanding, and can still manage to find some enjoyment in life. Keep posting, this Forum is a lifeline for lots of us.
Hi Robert, thanks for posting. I try sometimes to put myself in my mums shoes when her behaviour is strange to try and make sense of how ahw muat be feeling. You have explained it very well from your own personal experience and it sounds so frightening. I think anyone living with this disease is so brave by learning how to navigate a confusing new world that doesn't always make sense like it did before. I hope your diagnosis has been a positive step for you and the forum here is a great community as well and safe space to talk, vent or share how you're feeling
thanks Robert, My wife was diagnosed with dementia last summer. Her short term memory was bad now its almost non exsistant. She repeatedly asks me the same question as if she had not heard me the first twenty times. Anyway thank you so much for your insight it helps a lot to understand what she is thinking. God bless you for your strength and persiverance in talking about it to us. ( sorry about the spelling)
As i wrote a day or two ago i went to a carers event. when i got back my wife had become con vinced that i was trying to get her into a home ( not if i can help it ) and trying to get that thought out of her head was almost impossable, fortunately a niegbour had come to visit and she convinced Kath( my wife) that this was not the case and would not be in the forseable future. So i can breath again , she seems to have forgotten it now.
I'm very lucky as Kath is a very happy person and has never been aggresive.
Thank god for great niegbours.
I'm very lucky as Kath is a very happy person and has never been aggresive.
Thank god for great niegbours.
Thank you so much, i used to get told you have already asked me that so i learned to answer and what did you say !! but that was after a stroke a long time ago, i seem to be in a bit of respite at the moment it has given me the time to comment on here the one thing i would like to say to medical science is dont try to cure what is not curable but try to help with the confusion that is the thing which as a dementia patient i know wrecks lives and believe me ive had my moments !! take care
thanks again Robert, Yeah that saying "so it will never happen again" comes to mind. you are so right help to understand the confusion for both patient and carer should be the priority. Still we live in hope that someone will see that and help. Look after yourself.
I told my wife everyday that I loved her and that she was my sweetheart. She told her friends I was having affairs and planning to go away and leave her.
She also heard voices, and had conversations with people who weren't her.
She passed away peacefully a few weeks ago, and although I miss my beautiful friend and partner, I am glad she is no longer suffering. It is an awful illness, and all the research doesn't seem to be getting anywhere.
Keep using this forum Robert, we are all friends who will listen to you.
She also heard voices, and had conversations with people who weren't her.
She passed away peacefully a few weeks ago, and although I miss my beautiful friend and partner, I am glad she is no longer suffering. It is an awful illness, and all the research doesn't seem to be getting anywhere.
Keep using this forum Robert, we are all friends who will listen to you.
thanks Robert for posting this. I am in a similar situation...
Where I know the diagnosis and feel helpless when I see/ feel the progression. For sure, I've learned to laugh at some of the struggles 🙈
But how do you explain to loved ones what you're feeling.. Hard to verbalize.
I we are all have unique experiences.. Not all have same symptoms at once.
As a single parent, trying to come to terms with not being able to continue my career and can no longer make a living. Symptoms probably started around 5 years ago.. In my mid-fifties.
One of my symptoms is long-windedness. 😁
My biggest challenge is trying to get the family to understand that I feel like I am losing myself, who I was, and any joy I used to feel.
- how? ?
Just started looking for songs..
I wish to express my feelings while I can..
Apologies if this sounds negative.. I just want to set up a good way (in advance) for saying goodbye. Music ideally. Ideas?
Where I know the diagnosis and feel helpless when I see/ feel the progression. For sure, I've learned to laugh at some of the struggles 🙈
But how do you explain to loved ones what you're feeling.. Hard to verbalize.
I we are all have unique experiences.. Not all have same symptoms at once.
As a single parent, trying to come to terms with not being able to continue my career and can no longer make a living. Symptoms probably started around 5 years ago.. In my mid-fifties.
One of my symptoms is long-windedness. 😁
My biggest challenge is trying to get the family to understand that I feel like I am losing myself, who I was, and any joy I used to feel.
- how? ?
Just started looking for songs..
I wish to express my feelings while I can..
Apologies if this sounds negative.. I just want to set up a good way (in advance) for saying goodbye. Music ideally. Ideas?
Hi @Shelleydvr
Firstly, welcome to the Talking Point forum.
I hope you will get replies that will help you.
I do not have dementia, but I am the full time carer for my wife who has Alzheimer's disease and I've been caring for her for about 6 years.
Apart from music you have suggested, one way to get family and friends to know more about "the condition" (bearing in mind that there are several types, and each person may have their own path of development) is for them read about it.
Both the Alzheimer's Society and the Dementia Society have ideas about books that can help and/or inform etc. You can, of course, search online.
One is "All the Dancing Birds" by Auburn McCanta which tries to explain things from the point of view of the person with dementia - and may help "verbalise" the position.
There are some excellent poems already on this forum. At the head of the page, across the top are a list of things, one is "Forums" and if you click on that it will bring up the different conversation threads, and of you scroll down, you'll come to a yellow heading saying "Members Area" and under that is the heading "Poems" - click on that.
Example 1:
DEMENTIA... A SLIP IN TIME
Where am I? Where am I? You hear me cry,
It all looks so different, why oh why?
How did I get here? where is this place?
Who’s sat over there? An unfamiliar face!
This isn't my house, this is not my chair,
Why is life so very unfair?
I want to go home, I don't want to be here,
In strange surroundings, feeding my fear,
Then I am back, as quick as I went,
And all around me is heaven sent,
My beautiful wife sat right there
Here I am again, sat in my chair,
How long was I gone? it's just a slip in time,
I can never be sure what really is mine.
by Norrms McNamara
Example2:
ENCOURAGEMENT
If with pleasure you are viewing any work that I am doing,
If you like me or you love me - tell me now.
Don't withhold your approbation till the Father makes oration
And I lie with snowy lilies o'er my brow.
For no matter how you shout it, I won't care much about it,
I won't see how many tear drops you have shed.
If you think some praise is due me, now's the time to slip it to me,
For I cannot read my tombstone when I'm dead.
More than fame and more than money, is the comment warm and sunny,
Is the hearty warm approval of a friend,
For it gives to life a savour, and it makes me stronger, braver,
And it gives to me the spirit to the end.
If I earn your praise bestow it; if you like me let me know it;
Let the words of true encouragement be said.
Do not wait till life is over and I'm underneath the clover,
For I cannot read my tombstone when I'm dead.
Example 3:
ALZHEIMERS POEM
Don’t ask me to remember, don’t try to make me understand.
Let me know that you are with me, kiss my cheek and hold my hand.
I am confused beyond your concept, I am sad and sick and lost,
All I know is that I need you, to be with me at all cost.
Do not lose your patience with me, do not scold or curse or cry,
l can’t help the way I am acting, can’t be different though I try.
Just remember that I need you, that the best of me is gone,
Please don’t fail to stand beside me, love me till my life is done.
By Owen Darnell
Thank you..
The poems are lovely..
And thank you for helping me navigate this site..
Hi again @Shelleydvr
Look up Wendy Mitchell and her book "What I wish People Knew About Dementia"
This lady was forced to retire as a nurse in her late 50's because of the onset of dementia. She is remarkable and goes round talking about dementia, and how to deal with it, to make as many people as possible know the details of how it has affected her.
Best wishes.
Look up Wendy Mitchell and her book "What I wish People Knew About Dementia"
This lady was forced to retire as a nurse in her late 50's because of the onset of dementia. She is remarkable and goes round talking about dementia, and how to deal with it, to make as many people as possible know the details of how it has affected her.
Best wishes.
Hello Robert, You post on here so reminded me of the frustration with my own dear Mum's behaviour when she was diagnosed. How on earth was she feeling as she was unable really to communicate any truthful words? How frightened was she I wonder and how lonely. I really did my absolute best to care for her and love her, try not to get angry with her when she just left meals on the side and wasn't eating. I feel so guilty to this day ( she passed last year) when I did once really loose my temper and shouted at her for not even trying to look after herself (by not eating). In the cold light of day, I know it was the disease making her behave that way, but.....
Anyway, thank you for posting, and I hope I haven't taken your thread away from your original subject. I didn't mean to, sorry.
Do keep posting on here. We are a very supportive and friendly bunch of people.
Hi again @Shelleydvr
Some while ago, I read a book called "Tuesdays with Morrie" by Mitch Albom. It's a short book that I think should be compulsory reading for everyone, even though I know lots of people don't read books. It's about a man who has motor neurone disease, which, as you know, is a progressive illness (sometime advancing slowly and sometimes more quickly). The relevance of mentioning this is that the character Morrie knows he's going to die. So he decides to organise and hold his own funeral whilst he's alive and still with it, so he can say goodbye to his friends and colleagues, and so he can hear the nice words they may want to say about him - what's the point of missing this, as is usual with funerals.
As you said you wanted to be able to say goodbye to your friends in advance, I thought it may be of assistance.
Cheers,
Thank you!! you are the only dementia patient i have ever shared thoughts with most people are still or have been carers and bless them for that, i think if you want a song or a poem to say goodbye thats really a nice thought, most people on here want to share poems or books about dementia i do not need any of that i like you have a front row seat, in 2020 i collapsed on the floor i was there for 3 days shortly after that i had a sudden onset of massive confusion and i thought this is it for me my doctor came to my home and put me on a drug called sertraline 100mg it takes a long time to work but it stopped at least 50% of confusion in my brain just wondering if it would work for you, take care and thank you
I echo your response.. Refreshing communicating with someone "in the front row "
I am on similar meds, but obviously only so much it can do.. But certainly helps..
We may have similar dementia.. I started having migraine -like headaches, over the last couple years.. And in 2021 I got the diagnosis.. So slower to get to the realization of the problem.
I thought I'm lucky to know the diagnosis so I can prepare for the future. But that in itself is a major challenge.. Lol
I wonder if a bunch of dementia sufferers shared a house, we could avoid bad accidents, causing fires, etc... Or it would just be that much worse!!
Could be fun 😁
I'd like to keep up chatting... When I remember 🙈
Some of the advice I've seen from carers are useful.. But the follow through is a little tough.
Take care
Thank you for writing @Shelleydvr and @Robert igotdementia
There are a few other people with dementia who post here. I hope they see your messages so you can share your experiences.
As a carer for my mum I want to thank you for sharing and giving a voice to explain how it is from the ‘inside’. It’s invaluable.
All good wishes to you both xx
There are a few other people with dementia who post here. I hope they see your messages so you can share your experiences.
As a carer for my mum I want to thank you for sharing and giving a voice to explain how it is from the ‘inside’. It’s invaluable.
All good wishes to you both xx
Thank you @Robert igotdementia and @Shelleydvr for sharing your viewpoints. I really hope you both find some other members in similar situations to try and support each other as best you can. It sounds such a lonely and scary journey and my heart goes out to you all.
My Mum was diagnosed about 3 years ago, although she had been showing symptoms for quite a few years beforehand, but nobody liked to broach the subject with her as she got so upset about it.
I know she gets scared and upset more regularly now, and the only vaguely positive thing is that she quickly forgets all about it, but it’s horrible to see her like this when it’s happening. Especially as this is more and more often now And I feel she is becoming more ”lost” every week. It’s such a cruel disease.
My Mum was diagnosed about 3 years ago, although she had been showing symptoms for quite a few years beforehand, but nobody liked to broach the subject with her as she got so upset about it.
I know she gets scared and upset more regularly now, and the only vaguely positive thing is that she quickly forgets all about it, but it’s horrible to see her like this when it’s happening. Especially as this is more and more often now And I feel she is becoming more ”lost” every week. It’s such a cruel disease.
