Alzheimer's Society Dementia Advert

icanhandthemback that advert is tame to the reality of looking after someone with dementia 24/7. My mom lived with me for the last 18 months of her life when I couldn't trust her to look after herself. I would have had her sooner but my brother sided with mom. He regrets it now and the fact he didn't help me.

Dementia took everything from my mom but the only things she keep strangely was the fact she loved me but thought I was her mom and she never wet or soiled herself as she always knew she needed the commode. From when she started to live with me she insisted on wearing a pad but it was only like a thick Tena lady. Only time it was wet was when she died and her bladder voided.

The truth about looking after someone with dementia or Alzheimer's people wouldn't want to know. My mom died long before her body and the last 4 months of her life was a living hell as she became violent. But it was out of fear she didn't know who she was ,where and who I was . Thought I was her mom I used to tell her I was her daughter and she would say I know mom and I love you.

Mom had breast cancer and had her second mastectomy and lymph nodes removed when she was 86. In someways I wish it had been terminal but then she wouldn't have seen my son and brother get married. My daughter was already married and got to held her first great grandson.

While she could still do things like wash even though she forgot how I showed her as I thought it was important she does things. She had always brushed her teeth 3 times a day. Many times she swallowed the toothpaste but said she had minty fresh insides.

I got attacked multi times a day and it's amazing how much strength a little woman who weight 6st has when she frightened. I used to try and wrap the duvet round her and hold her until she had exhausted herself and went to sleep . I bear the scars to this day . But I couldn't put my mom in a home . But am proud of the fact when my mom died she didn't have a sore on her body I made sure to look after her skin . And when it went paper thin covered it with light dressing so it didn't tear.

I had a pressure mattress and blown up booties from from district nurse. And a bed bar with I padded with pillows so mom won't get hurt. But one day she moved a pillow and deliberately hit her head on it saying I did it and she was going to tell the doctor and I would go to jail. After bathing it she went to sleep and woke up happy and we talked .

That's how it was she would sleep and I never knew how she would wake up. She did some awful things and disgusting things but it wasn't my mom . Mom had a died and this person appeared . But I still loved my mom but not what the dementia had done to her.

The day mom started dieing her breathing was awful. She used the commode at 5am and the doctor came at lunchtime . I said mom's dieing and the doctor said yes and gave me a prescription for end of life drugs. My nephew fetched them from the chemist by the hospice as they always stocked them . Mom never had any pain from the cancer until 5.30pm the district nurse came quickly and gave her a shot of morphine. My children had come down but they didn't want to see mom and I said she wouldn't you to. Just remember her as she was . My daughter said I can't stay in the house while nan died. She had seen her dad died . Told her it was fine and told my son to go too the hotel but he stayed.

I went into mom every 10 mins I couldn't stay with her all the time like I did with my husband. Went into her 10 mins past midnight and told her dad was waiting for her as she always believed they would be together again . Dad had died 10 years before. When I went in at 20 past mom had died aged 90.

Took me a year not to think of the violence and remember my mom before she had dementia. I was alone. Onky person who understood was my nephew who had looked after his nan with Alzheimer's . My brother didn't want him to as his ex wife and her sister should have done it. After 2 years they put her in a home . My nephew and his sisters visited more than her own daughter's.

It's only after Mon died did I realise what it cost me healthwise . But I did everything for my mom even gave her injections. But I did what I did because of love . But I never want my daughter to go through what I did. I am doing everything I can to keep my mind and body active. I was born disabled with a hole in my heart . First sign I am forgetting more than I do already due to my disability. I will go into a home . But hopefully I die before I get to that stage but not for another 20 years.

Like I said that advert is tame to the reality of dementia and Alzheimer's. And feel for everyone who has a loved one with it . 💐

I absolutely understand your experience (with some differences, as every experience is unique of course). Dementia very definitely can affect the body - my mum also forgot how to walk, how to sit and basically became a baby again. She spent the last months of her life in a constant state of terror, which was agony to witness. We were "lucky" in that we found a wonderful caring, loving and understanding Nursing Home, who not only cared and loved her, but did the same for us as her family. Dementia is horrible. Like the previous poster, I also volunteer with people living with dementia and their carers and I know that there is no easy way of dealing with it. This portrayal is horrific but, sadly, can be all too accurate. Sending love and sympathy to all those dealing with it, in all its forms.

My parents both had dementia, and I have had friends and neighbours over the years who had and still have it now.

Of the people I have known with dementia some like my mum deteriorated horribly fast, completely changing character from kind to aggressive, losing speech and comprehension with no recall of the past or present and are unable to recognise any close family or even themselves.

Others who I think of as the luckier ones are quiet, appear calm and peaceful, are gently confused but often smiling and sometimes recognise their loved ones until the end.

Like breast cancer , there are many different forms of how the same diseases play out.

Which ever way it pans out, it is a cruel disease and needs much more research in order to find a treatment.

kittylester

And terrifying for those newly diagnosed and for their carers.

I help run Carer Learning courses for people caring for those recently diagnosed with a dementia, for those who are newly post diagnosis, those waiting for diagnosis and for those who have been diagnosed with Mild Cognitive Impairment - which has a very high incidence of developing into dementia.

How awful must they feel having that thrust at them.

'Living with dementia' is the preferred term nowadays rather than 'sufferer'.

"living with dementia" is woke terminology to underestimate the suffering that people affected by dementia and their carers, family and friends.
Noone is living with dementia they are dying from it. It's a killer. It takes away your mind, your motor skills and your independence

Whiff, I understand exactly what you are saying because I have been through it twice.

It certainly has taken a toll on my health because it was so stressful but whilst you are in the thick of it you just get on with it. My Mum has been in a home for about 2 years and it is only now she is in a good one that I am starting to decompress. I am lucky that I have a husband who has always been supported and is now letting me have some freedom to just do what I want to do so that I feel as if I have my life back. However, when I visit the home regularly, there is a person sitting there who for 95% of the time is just not my Mother. When I look at photos of her then and now, the difference is amazing. You don't need to be told what is wrong with her.
That said, I would do it all over again because I can't imagine doing anything different. My grandfather had lived a difficult life with facial scarring which set him apart, had been a bit of a scoundrel with my grandmother and mother but had helped me when I needed it so I wanted to repay that. My mother, despite her failings, was the only constant in my life and helped me with ICSI so I could have my beloved son for which I was so grateful that I wanted to return that in spades. My only resentment in the worst times was not against them, it was for the family members who had also received a lot of help but wouldn't lift a finger but worried about their inheritance. I have told my children that I want them to put me in a home if I get dementia. I don't want their lives to taken up with caring for me but I would appreciate them visiting me. I also intend to write my own funeral speech whilst I am not affected so that the last words they hear from me is the true me.

Would you do it all over again, Whiff?

This advert doesn’t offend me at all. My Mum suffered from dementia, for ten gruelling years, from early days when she was scared as she knew. Through anti psychotic drugs to allow her some rest from relentless pacing, to the final indignity of double incontinence, immobile and uncommunicative in a bed for her last few years.
Anything that shows the possible reality and raises money for research has my support.

The more awareness that is raised about dementia the better. It might not reduce people's fears about it but it will, I hope, help them understand more and sympathise more with the struggles of patients who have dementia and their carers.

I hear people saying “I could never put my Mum in a home” but a really good home like my Mum spent her last 3 years in ensures her safety, being kept clean and well fed and having more company.

It also means that you can get a bit of time to yourself although often that means paying their bills, ordering new clothes, making appointments for them etc.

I went every other day to see my Mum and sat in the courtyard garden with her, took her out in my car, pushed her out in the wheelchair, had lunch with her. In the final few months I went every day.

Placing a loved one in a home does NOT mean deserting them. I had already looked after my Mum for 14 years and there was no way I could have lifted her, bathed her and kept her safe like the staff did. My back was already suffering! They have all the proper gear there and are trained in lifting, moving etc. I don’t know if people are still thinking that care homes are like prisons but Mum’s was more like a hotel. 🙂

I can't understand the "living with dementia" approach which seems to me an attempt to underplay the reality of the illness. It is a killer with no known cure. I get very fed up reading all the nonsense of how to help prevent it as if the person is responsible for it and only gets it through being mentally lazy. I feel the same about all the nonsense about "being brave" and "fighting cancer", it has the same feel, the patient just needs to apply mind over matter and all will be well, it won't. The only thing that helps is medical intervention, research and science. We cannot control these illnesses by thinking pleasant thoughts and to my mind it's wrong to encourage people to think they can. They suffer enough without the added guilt of being somehow to blame for it and not doing enough to stop it.

Greyisnotmycolour

I can't understand the "living with dementia" approach which seems to me an attempt to underplay the reality of the illness. It is a killer with no known cure. I get very fed up reading all the nonsense of how to help prevent it as if the person is responsible for it and only gets it through being mentally lazy. I feel the same about all the nonsense about "being brave" and "fighting cancer", it has the same feel, the patient just needs to apply mind over matter and all will be well, it won't. The only thing that helps is medical intervention, research and science. We cannot control these illnesses by thinking pleasant thoughts and to my mind it's wrong to encourage people to think they can. They suffer enough without the added guilt of being somehow to blame for it and not doing enough to stop it.

Having been through it with both my parents and now as a volunteer with Alzheimer's Society, I absolutely agree with you. That's on all counts - your comment about "being brave" and "fighting" cancer is also something which always annoys me. Similarly when people say that someone is "strong enough" not to let cancer win. Cancer is something which skilled medical treatment may or may not be able to cure. It has nothing to do with "bravery" or "strength". That implies that those who die from it are somehow weak and should have fought harder.

It's a pet hate of mine, too.

I do mean hate, as well.

icanhandthemback yes I would inna heart beat. I was born disabled with a hole in my heart. Met my husband when I was 16 he was 18. But he wanted me I didn't think it would last. He was my world . When I was ,29 I woke unable to control my limbs our children where 4 and 6 months. Didn't phase my husband he just said we alter our life to suit you and be a normal family. I had been in constant pain all my life and fell a lot. My parents where told it was growing pains and I was clumsy.

My fit healthy husband got grade 4 malignant melanoma 2001 and died in agony in 2004 aged 47. I then had both parents and mother in law dependant on me. So after nursing my husband ,helped my mom look after my dad he died aged 80 2007. I hated my in laws my father in law had died in 1988. But I looked after my mother in law until she died aged 91 in 2015 even thought I hated that woman for 40 years. After my husband died she denied she had a son or 2 grandchildren. But I couldn't not look after her. Really my mom was depandant on me from when my dad died. Like I said mom died in 2017.
I can't be anything than the person I am and I would do it all again the good ,bad and downright awful.

After my husband died I existed and didn't live the life he wanted for me until 2019 when I moved over 100 miles to the north west. Finally I am living my life to the full. But I owe everything to my husband my one and only true love . Plus my parents never treatment me different nor did my extended family. I didn't realise I was different until I went to high school and was bullied everyday for 5 years because of my pain and falling down all the time.

But the love and attention I had growing up and the love I had from my husband,dad and mom before dementia killed her I am a lucky woman. Unfortunately my son decided I was no longer his mom in 2020. I lost him and 3 grandson's who don't know I exist. But have a wonderful daughter, son in law and 2 grandson's . Plus all my friends I made here .

We all face our daily struggles and I treat people the way I want to be treated. So I haven't changed but life without my husband has been hard but I found out I am stronger than I thought . Since moving here my confidence has grown and I put myself first. It's not selfish but it's what we all have to do otherwise we lose us. Took me 15 years to be me.

My love and grief for my husband gets stronger every year. But I found the other half of me and I was his other half we made a whole. I lost half of me when he died . But my years living here my life has changed so much . So I consider myself lucky. I help people in away I can and a lot of people on GN and in my life have helped me . I care about people and I ramble on but that's me in real life 😁

Lovely post whiff.

I am so sad that everyone on here writes off people with any kind of dementia diagnosis. There is so much life for them to live - different maybe but still a great life.

Ourkid1, I began my volunteering role (helping carers and helping at Memory Cafes, MCST, MCI etc) with the Alzheimer's Society and, when they lost the contract in Leicestershire, we all moved to AgeUk who now provide a brilliant service.

It wasn’t much of a ‘great life’ for my mother, kittylester, when she was so often anxious or frightened of things she couldn’t even name.
‘What are you frightened of?’
‘I don’t know!’

Then there was the time she was in a dreadful state because she and her cleaning lady had taken my father’s dead body in the cleaning lady’s car to a graveyard a hundred miles away, and just dumped it!

No, of course they hadn’t - she’d had a dream, triggered by something on TV the previous evening.

But could I convince her? I had been there when my father died, I was there at his funeral, and he was cremated.
Nothing could convince her. I even phoned the cleaning lady, who told her that no, she’d never taken her anywhere in her car.
It was useless.
For well over 48 hours she was in a state of acute distress - only gradually did she come to accept that perhaps she was mistaken - but someone had still come to the door and asked her to get rid of a dead body - not my father’s though.

Just one example of the ‘great life’ my mother was able to enjoy when she had dementia.

Witzend

*icanhandthemback*, for too many years when I was coping with dementia, I used to find the Alz. Soc. carers’ forum excellent for a good old letting-off-steam vent - at least they all knew what it was like!

Yes I totally agree. Talking Point is brilliant, for carers, for the person living with Dementia and for the bereaved. They have different sections depending who you are at that time. However they all agree that caring for a person living with Dementia is one long slow bereavement. I certainly agree with the add although I personally would not have said that my mother died many times, I would say she deteriorated many, many times and that for me was definitely a bereavement each time. We grieve for what might have been, we grieve each time they can no longer do something else and we think we cannot grieve any more when they finally die, yet it hits us like a bomb. So much grieving for a lot of carers.

My husband has most definitely not been written off kittylester I’m quite upset at being accused of that.

I find that statement cruel and I hope you wouldn’t use that phrase in real life to a carer who happened to disagree with your living with

I volunteered for over 30 years with very vulnerable and mentally challenging people volunteering is very different to actually living with …

It isn't my 'living with', granniesunite. It's the accepted terminology now. I didn't accuse you personally of 'writing' your husband off.

I am so sad that everyone on here writes off people with any kind of dementia diagnosis. There is so much life for them to live - different maybe but still a great life.

I think this is such a crass statement after you have read on here just how their relatives have suffered. If you look at the majority of posts on here, dementia sufferers haven't had a great life. May be the people you know who have been diagnosed have been in different stages when they have first been diagnosed but both my relatives were quite far down the road by the time they had a diagnosis. They were already suffering.

kittylester

It isn't my 'living with', granniesunite. It's the accepted terminology now. I didn't accuse you personally of 'writing' your husband off.

People are allowed to object to "accepted terminology". I worked for a charity which provides housing and support for severely disabled people. There was ongoing discussions in the charity hierarchy as to whether the recipients of the support were "service users", "clients", "residents" "patients" "users" (fgs), "customers" the discussions seemed endless. Eventually they asked the "people who lived there" who said they couldn't care less. What was a priority to the charity hierarchy was of absolutely no concern to the people it supported. The terminology remained fluid. It's best not to be absolute - this year's black will be next year's blue.

My granddaughters other grandma is terrified during every waking moment, my oldest friend is becoming aggressive, she has lost the ability to recall who people are and find words to express her needs, another friend is convinced his wife is dead - she isn’t - and is now unable to feed himself. Dementia has taken life from all three of them, in one case very quickly, think weeks not months, in the others more steadily. They and their loved ones are suffering.

As individuals we respond differently to any message. The advert doesn’t shock or distress me but then I’m someone who wants to be told truthfully the prognosis about any illness I or a loved one have. Other people would rather not know. Adverts don’t and can’t differentiate between people. If we’re caring for someone we will know if they would be distressed by this advert and if so will do our best to protect them from it. For ourselves we can make a choice whether to hear its message or not.

We had the self same issue, OldFrill

The residents became customers, who became, service users, and then became people.

In an elderly people's home, I asked someone if she wanted to put on PPC before eating. (Personal protective clothing)
"No!" She said
"I want a bib, the same as the other old girls!"

"kittylester

I am so sad that everyone on here writes off people with any kind of dementia diagnosis."

All I have read is people telling heart rending experiences of coping with others with dementia. I worked with people with dementia and almost every female member of my family has suffered from it for at least three generations.
I supported my mother when she was forcibly sectioned. Don't ask me to recount that experience. I supported her to her death. The speed of her mental demise was lightning fast but her body slowly wasted away. She had always said she didn't want to live like that (like her aunts, her mother, her older sisters) but she had no choice. When she eventually died she was a shrivelled shell, unrecognisable, pain etched indelibly in every wrinkle.

The people you are insulting object to your terminology, however your lack of empathy is inexcusable.

Greyisnotmycolour

I can't understand the "living with dementia" approach which seems to me an attempt to underplay the reality of the illness. It is a killer with no known cure. I get very fed up reading all the nonsense of how to help prevent it as if the person is responsible for it and only gets it through being mentally lazy. I feel the same about all the nonsense about "being brave" and "fighting cancer", it has the same feel, the patient just needs to apply mind over matter and all will be well, it won't. The only thing that helps is medical intervention, research and science. We cannot control these illnesses by thinking pleasant thoughts and to my mind it's wrong to encourage people to think they can. They suffer enough without the added guilt of being somehow to blame for it and not doing enough to stop it.

Oh yes. An aunt of mine (thankfully living in Canada so contact was minimal) told me it was my mother’s own fault that she’d got dementia. Now, if only she’d been more like the sprightly 90 year olds at her church…..

Needless to say, she (still) is one of those very judgemental churchgoers we could all do without.

I would just add that my mother’s cleaning lady, also a churchgoer, was an absolute godsend during the last few years before DM finally moved to a care home - a truly good, kind person.

KittyLester said - "I help run Carer Learning courses for people caring for those recently diagnosed with a dementia, for those who are newly post diagnosis, those waiting for diagnosis and for those who have been diagnosed with Mild Cognitive Impairment"

....and that is very different to what a lot of us have seen with our loved ones - at the end stages, dementia sufferers are often frightened, unable to communicate, need to be spoon-fed, and are sometimes doubly incontinent.

Obviously, it's very different l, but a diagnosis now doesn't mean that someone immediately becomes bedridden etc.

Early diagnosis and awareness mean that people can have years of fairly normal and active life. The worry is that advert could deter people from going to the gp.

It isn't just me who thinks this.

The people who run the Dementia walking group, gardening group, choir groups, the Memories in sheds, the social groups, the Memory Cafes, the Cognitive stimulation groups, the carer learning groups etc may as well give up and stop wasting their energy.