Dear Friends, what are we to do and what do we need?

[NellieBea]

In utter despair as always and have been for quite some time...
I check in every day, have only been a member for a week and am greatly saddened to put it mildly that so many are suffering! A strong word but that is what I feel, suffering and torturous. What can we do? What can help? Or is there no happy ending to dementia for those with and for those who love?
Just having a rant as i don't know how to cope anymore and there seems to be no light, i long for Mum to be taken, she is a true Catholic and i've prayed for her to pass away which is gut wrenching, i have found myself wanting to give her sleeping tabs to end this misery and would stand up in court and say "yes i did to end our misery" i never would but it just seems pointless, relentless and draining on every level. My beautiful Dad got 6 months to live with cancer and it was the worse 6 months of our lives but we were with him every step and he with us. I just want to scream as i feel this is a type of cancer of the brain gradually destroying. My Mum's mind has become a never ending jigsaw with missing pieces and i can't believe how many people are devastated by this cruel and shocking condition. I would like to campaign in some way but don't know where to start or what is needed?! Love conquers all they say but my love and care is exhausted. What can we do to help and support our loved ones as well as ourselves?! Just needed to express my anger, dispair, frustration and would like to recognise the truth and let others know the reality of living and loving with dementia x thank you to anyone who has read, understood and hope and pray for some comfort and hope for all of us xx

 

[lizzybean]

You sound really tortured & my heart goes out to you. The only thing you can do is give her the best care that you can without totally exhausting yourself. you have not given us much info. What stage is she at? Do you have carers? Is she living at home/with you/in a CH?
Someone could give better advice/sympathy if we knew more.

 

[WirelessPaul]

No argument there NellieBea. It is just the actuality of total helplessness and waiting for the next area of thought, motor skill to be affected. People still ask me if things are any better, that would be nice.
Paul

 

[Ash148]

Hi Nelliebea,

My heart goes out to you and I share your sentiments.

On Monday, Dad, who has been a loving husband for 49 years through many tough times with my difficult Mum, said: "Don't get me wrong, but I think that at a certain stage everyone should just MELT". It's hard to disagree, when the dementia sufferer seems to have zero quality of life left.

 

[NellieBea]

Dear Friends, Thank you x

For support and comfort x Mum was officially diagnosed with VD 3 years ago, i resigned from my demanding full time job last November as i couldn't cope with both work and Mum and not much else. We have 2 fantastic carers who come in twice in the day. My bro has been supportive but sadly his partner has cancer and she has fallen into a coma and not responding so he is at her bedside, bless them both.
How do you know what stage a person is at?! I am often asked but don't know the answer... So here i am until she's ready to sleep at 9 or 10 tonight when i give her diazepam in which time she will ask me every 30 secs "where am i, where am i"?!
Thank you again for taking the time, i see many posts and want to offer comfort but feel so weak right now and feel i am unable to offer comfort to others though i wish i could. Love, thanks, perseverance and hope xx

 

[blandford516]

Hi Nelliebe,

I think a lot of us on here can completely identify with your situation . I have been totally exhausted ,helpless and extremely distressed at times . This has lasted for 18 months , but now things are improving slightly and im sure it will improve for you too ,chin up girl as best you can . Thinking of you x

 

[NellieBea]

Hi Nelliebe,

I think a lot of us on here can completely identify with your situation . I have been totally exhausted ,helpless and extremely distressed at times . This has lasted for 18 months , but now things are improving slightly and im sure it will improve for you too ,chin up girl as best you can . Thinking of you x

Hey Blandford, thank you so much, can i ask in what ways have things slightly improved for you? Keen to hope for the future. Love and thanks xx

 

[copsham]

Mum was officially diagnosed with VD 3 years ago, i resigned from my demanding full time job last November as i couldn't cope with both work and Mum and not much else.

I identify with you so much Nelliebea. I think the contrast of your life with your demanding job to that of carer of a person with dementia is so great. You have lost the status, mixing with other people, the freedom of lunch breaks, perhaps.

In the midst of your turmoil you are wanting to help others and campaign! BUT don't forget to look after yourself too. Grab every moment you can for yourself.

 

[NellieBea]

Hi Nelliebe,

I think a lot of us on here can completely identify with your situation . I have been totally exhausted ,helpless and extremely distressed at times . This has lasted for 18 months , but now things are improving slightly and im sure it will improve for you too ,chin up girl as best you can . Thinking of you x

Hey Blandford, thank you so much, can i ask in what ways have things slightly improved for you? Keen to hope for the future. Love and thanks xx

 

[Gigglemore]

Hello Nelliebea - so sorry to read how low you feel. I think so many of us feel angry at the disease and at the lack of knowledge about what trials are in store for our own loved ones, and the helplessness.

I know very little and am fairly new to the forum but reading your post made me think you really need some kind of respite.

Do hope something good happens in your life soon. Take care xx

 

[Auntiep]

Having a break helps, try and ask about respite. You'll feel stronger when you get some time for yourself. I went to hairdresser and bible study for first time since Mum came to live with us and it's fed my soul!

P x

Sent from my GT-I9195 using Talking Point mobile app

 

[Kevinl]

In the words of the song "Pick yourself up, dust yourself off and start all over again" and do this for as many days as you have to and if there's no light at the end of the tunnel" well just stomp off down there and turn it on for yourself.
It isn't easy and I can't offer you any practical help we all want it to be over but until then just do the best you can then when it is over we beat ourselves up we could have done more.
The circle of life thing just right now you're at the bottom of the curve, keep smiling, keep coping and keep posting and never apologise to us for how you feel.
K

 

[Hair Twiddler]

Hello NellieBea,
I know what you mean. My mum is also with me everyday, it feels as if the dementia isn't diminishing her, but it is knocking huge chunks out of me.
I too am weak and unable to think of comforting words to pass onto others right now.
Best wishes -Twiddler.