Living Well or suffering ?
- Thread starter Norrms
- Start date
Norrms, that was brilliant thank you .
Yes certainly my mum is suffering in her late stages of Alzheimer’s, so frightened, lost, totally confused, don’t recognise her own faeces and wonders what’s happening to her, That’s Suffering Beyond Belief.
That’s my mum, but the family are all suffering with her
Thanks for vid x
Yes certainly my mum is suffering in her late stages of Alzheimer’s, so frightened, lost, totally confused, don’t recognise her own faeces and wonders what’s happening to her, That’s Suffering Beyond Belief.
That’s my mum, but the family are all suffering with her
Thanks for vid x
A difficult and dreadfully sad video to watch but the message is spot on. No one who has dementia or cares for a person with dementia can recognise the the phrase “Living well with dementia” You only have to have experienced it, or even to have read these forums for a few months to know that “Living Hell with dementia” would be a more apt phrase.
We don’t need sugar coated inspirational sayings - we need practical and help, and most importantly, more research to find a cure.
Well said Norrms, Thanks. XX
We don’t need sugar coated inspirational sayings - we need practical and help, and most importantly, more research to find a cure.
Well said Norrms, Thanks. XX
100%agree with the sentiments in this video, no-one lives well with dementia, not the one with dementia nor the loved ones.
I actually find the phrase living well with dementia insensitive, and offensive, and yes my mum although not yet screaming out is definitely suffering at times.
Well done on speaking out.
I actually find the phrase living well with dementia insensitive, and offensive, and yes my mum although not yet screaming out is definitely suffering at times.
Well done on speaking out.
Thank you for making this video. It will help me explain to friends and family members by sharing it exactly what living with dementia is like for my husband who is now at the late stage
Well said Norm. I went to a Dementia Friends (sorry mods) session last spring and could not get them to understand you don't live well with dementia. They had some idea of people with dementia living in blissful ignorance of the world and or their problems. If only life were that simple and fair.
Thank you Nae, also, its not the moderator's fault, its those who advocate this kind of language in other groups and companies, thank you for your kind words, so many on other sites are saying the same thing, hopefully someone will listen xxxxxxxxxxxxx
Thank you so much for this @Norrms, I cried as you were talking about people in late stage crying out. I'm sure my Mum is late stage now, she can't speak, only a little in the mornings, her swallow is starting to go, she's been bed-bound for a long time.
My comfort, and I hope it's hers, is that I'm still with her looking after her and she's rarely distressed, we're both lucky.
Never, at any point has she "lived well with dementia", how is that possible? Those words trivialise this disease, I totally agree. Mum still has capacity I know she has, how on earth can that be living well??
I will certainly, in the future, pull anyone up who spouts that at me (am fired up now), thank you a million times xxx
My comfort, and I hope it's hers, is that I'm still with her looking after her and she's rarely distressed, we're both lucky.
Never, at any point has she "lived well with dementia", how is that possible? Those words trivialise this disease, I totally agree. Mum still has capacity I know she has, how on earth can that be living well??
I will certainly, in the future, pull anyone up who spouts that at me (am fired up now), thank you a million times xxx
Thank you Loopiloo and Prudence, hopefully these words will be read and we may have a change in wording
Nail hit squarely on on the head there, well said Norman. My wife is in the early stages and even though I press home to her that we are still having a good life together most of the time she has never for one moment lived well with dementia. Every day I have to witness the struggles and raw emotions that this disease have brought to her without being able to make it go away for her. The feelings can be less “living well” and more living in despair for her and hopelessness for me for too much of the time as every time we pick ourselves up we soon fall again. However, as you say, we just live with dementia and we get on with it as best we can.
Thank you for sharing Norrrms and you are so right. I could see how much suffering my Nan and Granddad went through when they had Alzheimers. I suffer from mental health problems at times, another thing that often gets trivialised, unless people know what true suffering is they will never truly understand. Im currently doing a research project for Design Studies at University, Im looking at ways I could improve objects or the environment within the home from a product design perspective to help the sufferer with their memory. I hated seeing my Grandparents eventually having no choice but to go to a Nursing home when their illness worsened and I would love to be a part of or do something to help keep sufferers living within their own home for as long as possible. Would you mind sharing some of your experiences and what has been done to help you around your home?
