Dementia Support Line
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In jan 2022 my husband was diagnosed with “mild...
My sister has Dementia, she is 75. In her later life she has cared for so many family with either Dementia or other illnesses. It is so unfair that she has been struck...
My dad suffered from dementia, my mum suffered from...
My story, like every story, is different. We’re at...
During summer, every morning, the sun filtered through the blinds, casting striped shadows across the bedroom wall. I would open my eyes, feeling the familiar weight...
From the government, help is needed to fund research and provide realistic care to the loved ones and family.
Training in doctors surgery hospital to ALL STAFF who...
My husband was diagnosed with altzeimers 12 years...
My husband Frank was diagnosed with early onset Alzheimer’s at 59, he is now 73. We felt something was wrong at the time as he was making so many bad blunders in his...
For nearly 20 years I had been trying to get my husband's doctor to test him for Alzheimer's I tried to see his doctor he wouldn't see me I rang his doctor but...
My mum was diagnosed with Alzheimer's and vascular dementia in 2017 just a couple of years after Dad died. As mum deteriorated my sisters and I had to help her with...
My husband has been diagnosed by a consultant Neurologist. Firstly in 2020 with Alzheimer’s disease and secondly with Lewy bodies dementia in 2023. Now discharged...
My husband had Alzheimer’s disease for 10 years. He...
In jan 2022 my husband was diagnosed with “mild vascular dementia “ we were told he didn’t need any medication and it could be “years”. before he might even need medication. Fast forward to Aug 2023 his condition started to get worse, we were told that there is no medication that would help him, Sept 2023 he had times when he didn’t know who I was, by Nov 23 he had to go into care as a crisis patient, a care home that was dirty and smelly, I will never forget the look on my husband’s face when my daughter and I had to leave him there, he asked us why we were leaving him, I had to lie to him and tell him it was just for a couple of days because he hadn’t been very well. The only help we got was from a CPN who actually told a social worker that we were heading towards a crisis point. Thankfully we were able to move my husband into a different care home, but he went to the residential unit and not the dementia unit, so staff didn’t have time to really help him and he spent most days in his room staring at a fence, his dementia became worse and he had to be moved again, this time into a more suitable home, I have since been told his original diagnosis was incorrect, he has Lewybody dementia with Alzheimer’s. All of this has not only affected him but also has had a lasting impact on my life.
CAROLYN
My sister has Dementia, she is 75. In her later life she has cared for so many family with either Dementia or other illnesses. It is so unfair that she has been struck down like this! Her daughter and myself do what we can for her,but we live far away. A friend of hers gets to her when she can. She is so very lonely. There needs to be more communal group awareness. Her name is Georgie. I've lost a sister and a friend...
Jane
My dad suffered from dementia, my mum suffered from carer breakdown as my dad’s behaviours became more challenging & life risking. I recall the day he was taken into care so painfully, losing access to his own home & family. As his condition worsened he was placed into secure care such was the risk he posed to himself & others. It breaks my heart to recall such a gentle, thoughtful man lose everything, including his dignity, & I hated leaving him in care, alone & confused beyond comprehension. He lived on only to survive pneumonia & end up much weakened, hopeless & back in care. Thankfully he passed on shortly after, just before his 82nd birthday. His passing came as a relief to us all, especially dad. Living with dementia is devastating & the cost of care crushing.
Robert
My story, like every story, is different. We’re at a place of change in my husband’s condition, which we’ve both noticed. It’s upsetting and traumatic, but there is much love and laughter, too. I love my husband dearly, yet, seeing these changes, is hard.
Some days are good, some days he’s up in my face, shouting, and I have to get out. When he struggles to dress, have personal difficulties, on one day, I can help, then, on another, I am shouted down, told what I’m doing is too much, that I’m not helping him. I deal with my own health condition too. The stress and trauma impacts how I function, what I can do.
We’ve been together since 1982, married since 1986, and I wonder what our Ruby anniversary will look like in 2 years time. My husband doesn’t have Alzheimer’s-he deals with it. To say “I have it” gives it too much credence, and it doesn’t deserve it at all. As hard stretched as our services are, those who deal with this disease need to be seen quicker,. My husband hasn’t had a check up for over a year now, more like 18 months. We need to know if there are changes, so that we can adapt. Having to wait and wait is painful. This needs to change now. Please stop making us wait and wait, instead of signposting, get along side us, with us, in person. As I work, i can’t access carer support during the day, i can’t meet with others. Our nearest family member doesn’t drive, and lives 20 miles away. We do have friends that support us, but they work, and can’t just drop everything for us. Our faith in God keeps us going, and without it, we would be in pieces, in every way. Without God, days would be harder, with greater anxiety.
Alzheimer’s is painful, degrading, forever changing. The finances my husband is awarded doesn’t go far enough to meet the care he needs. His private pension was cut by £200 a month, as he was over his personal allowance. £200!! That would pay bills, stop us being in a continuous overdraft. I can’t use respite, get any more care support, as we don’t have the finances for this. The FoodBank I volunteer with helps us with bits and pieces, we use an app to get food that would be thrown away. The heating won’t be going on until we are desperate!
Our daughter, who lives away from
home, does all she can to help us. It’s so painful for her to see her dad like this. She can support via the phone or FaceTime, but, due to work and study, it’s so much more complicated for her, and she has to deal with this away from us. We miss her terribly and love her dearly.
The government needs to stop taking away finances, increase the allowance for those with dementia, not penalise them, give reduced heating bills. We need people with us, not just a voice on a helpline! Holistically speaking, partners and family members would benefit from free, long standing mental health support.
This is a life stripping, debilitating disease, yet we will do everything we can to fight it.
Some days are good, some days he’s up in my face, shouting, and I have to get out. When he struggles to dress, have personal difficulties, on one day, I can help, then, on another, I am shouted down, told what I’m doing is too much, that I’m not helping him. I deal with my own health condition too. The stress and trauma impacts how I function, what I can do.
We’ve been together since 1982, married since 1986, and I wonder what our Ruby anniversary will look like in 2 years time. My husband doesn’t have Alzheimer’s-he deals with it. To say “I have it” gives it too much credence, and it doesn’t deserve it at all. As hard stretched as our services are, those who deal with this disease need to be seen quicker,. My husband hasn’t had a check up for over a year now, more like 18 months. We need to know if there are changes, so that we can adapt. Having to wait and wait is painful. This needs to change now. Please stop making us wait and wait, instead of signposting, get along side us, with us, in person. As I work, i can’t access carer support during the day, i can’t meet with others. Our nearest family member doesn’t drive, and lives 20 miles away. We do have friends that support us, but they work, and can’t just drop everything for us. Our faith in God keeps us going, and without it, we would be in pieces, in every way. Without God, days would be harder, with greater anxiety.
Alzheimer’s is painful, degrading, forever changing. The finances my husband is awarded doesn’t go far enough to meet the care he needs. His private pension was cut by £200 a month, as he was over his personal allowance. £200!! That would pay bills, stop us being in a continuous overdraft. I can’t use respite, get any more care support, as we don’t have the finances for this. The FoodBank I volunteer with helps us with bits and pieces, we use an app to get food that would be thrown away. The heating won’t be going on until we are desperate!
Our daughter, who lives away from
home, does all she can to help us. It’s so painful for her to see her dad like this. She can support via the phone or FaceTime, but, due to work and study, it’s so much more complicated for her, and she has to deal with this away from us. We miss her terribly and love her dearly.
The government needs to stop taking away finances, increase the allowance for those with dementia, not penalise them, give reduced heating bills. We need people with us, not just a voice on a helpline! Holistically speaking, partners and family members would benefit from free, long standing mental health support.
This is a life stripping, debilitating disease, yet we will do everything we can to fight it.
Paula
During summer, every morning, the sun filtered through the blinds, casting striped shadows across the bedroom wall. I would open my eyes, feeling the familiar weight of anxiety pressing down on my chest. It was a bright day outside, yet the sunshine felt distant in my heart. That day was no different; I was at war with my mind, and that day my fears loomed larger than ever.
I have never been one to easily forget things. As a child, I was the keeper of family birthdays and anniversaries, dutifully sending cards to ensure no one felt overlooked. But ever since my mother had been diagnosed with dementia, I couldn’t shake the feeling that the shadows of that illness were creeping closer, inching into my life.
It started innocently enough—a name slipped my mind at the pub with some friends and an eerie shiver of realisation ran down my spine. The next week, I found myself staring blankly at an empty shelf in the kitchen, wondering what I had gone in there to find. Anxiety began to twist itself into my routines, each forgotten detail strengthening its grip.
“Am I developing dementia?” I mumbled to myself in the mirror, while brushing my teeth. Each time I neglected to recall something, the voice grew louder. It echoed in my thoughts as I stood in line at the supermarket, trying to remember where I had parked the car, or what I needed to buy.
“Do I have bread and milk?” My brows knitted together in concentration, and then I steeled myself, committing to certainty while inside I felt like a house of cards slowly collapsing.
I struggled with the scale in a way that was becoming familiar. Every morning, I weigh myself and sigh at the numbers—the weight is stubborn, much like my worries. I often fantasise about losing weight and feeling lighter in body and mind. Perhaps, if I am healthier, these memory lapses will dissipate. Maybe I will outpace that familial darkness that looms large with every birthday. But each step on the treadmill felt heavy, and the stubbornness of my body made me question if it was my brain that was failing me or just the physical reflection of my internal struggles.
Days turned to weeks, and I decided to take action—a walk around the neighbourhood, a small act of defiance against my ghosts. I took a deep breath before stepping out the front door, determined to feel the sun’s warmth on my skin instead of the chill of fear. But the minutes felt like hours, and as I slowly walked with the aid of a stick, I became more aware of my surroundings—the flowers blooming, the children laughing, the sounds of life bustling around me. Yet, even as I took each step, I scolded myself: “What if I forget the way back? What if…” And that fear tightened around my throat like the hands of the devil.
Halfway through my stroll, I met Ken, an old neighbour I had known for years—a warm man who never failed to brighten his day. As we chatted my heart raced; my mind racing, searching for a way to anchor myself in the moment. Memories flooded back—a shared cup of coffee, late-night chats, and laughter that spilt like warm honey over the years.
“Hey, Robert, you’ve been on my mind,” Ken said, his smile radiant with kindness.
I could feel a warmth growing within —this connection, this recognition, was a beacon against my lurking fears. We spoke for a while longer, sharing stories from the past; it was comforting to realise that some memories were so strong, that they resisted being swept away by the tides of forgetfulness.
“Do you ever worry about forgetting?” I blurted out, the question hanging between them, raw and vulnerable.
Ken chuckled lightly, a knowing smile in his eyes. “Oh, mate, we all forget things. It’s just how life works! What matters is keeping the ones you love close and sharing laughter—those are the memories worth holding.”
As we parted, with a warm and lingering handshake, I felt the anxiety ease just a fraction. Perhaps forgetting wasn’t such a monster after all, but a humbling part of being alive. And as I continued to walk, feeling lighter with each step, I resolved to seek joy instead of dread.
That evening, standing in front of the mirror, I took a deep breath, armour against worry. “If I forget, I want to forget the things that weigh on me. I’ll remember the laughter, the sunshine, the connections.” And in embracing that, I found hope—a fragile but potent flicker that reminded me I was more than my fears.
In the days that followed, I began to shift my narrative. Whenever I would forget a name or lose my train of thought, I would take a moment to appreciate what I did remember, to cherish those slices of life that helped shape me. I started walking more, connecting with people, and nurturing memories worth holding onto.
Maybe I wouldn't conquer the fear of fading away, but I could certainly refuse to let it define me. And somehow, I found that remembering joy was the best antidote against the shadows that lurked around my mind.
I have never been one to easily forget things. As a child, I was the keeper of family birthdays and anniversaries, dutifully sending cards to ensure no one felt overlooked. But ever since my mother had been diagnosed with dementia, I couldn’t shake the feeling that the shadows of that illness were creeping closer, inching into my life.
It started innocently enough—a name slipped my mind at the pub with some friends and an eerie shiver of realisation ran down my spine. The next week, I found myself staring blankly at an empty shelf in the kitchen, wondering what I had gone in there to find. Anxiety began to twist itself into my routines, each forgotten detail strengthening its grip.
“Am I developing dementia?” I mumbled to myself in the mirror, while brushing my teeth. Each time I neglected to recall something, the voice grew louder. It echoed in my thoughts as I stood in line at the supermarket, trying to remember where I had parked the car, or what I needed to buy.
“Do I have bread and milk?” My brows knitted together in concentration, and then I steeled myself, committing to certainty while inside I felt like a house of cards slowly collapsing.
I struggled with the scale in a way that was becoming familiar. Every morning, I weigh myself and sigh at the numbers—the weight is stubborn, much like my worries. I often fantasise about losing weight and feeling lighter in body and mind. Perhaps, if I am healthier, these memory lapses will dissipate. Maybe I will outpace that familial darkness that looms large with every birthday. But each step on the treadmill felt heavy, and the stubbornness of my body made me question if it was my brain that was failing me or just the physical reflection of my internal struggles.
Days turned to weeks, and I decided to take action—a walk around the neighbourhood, a small act of defiance against my ghosts. I took a deep breath before stepping out the front door, determined to feel the sun’s warmth on my skin instead of the chill of fear. But the minutes felt like hours, and as I slowly walked with the aid of a stick, I became more aware of my surroundings—the flowers blooming, the children laughing, the sounds of life bustling around me. Yet, even as I took each step, I scolded myself: “What if I forget the way back? What if…” And that fear tightened around my throat like the hands of the devil.
Halfway through my stroll, I met Ken, an old neighbour I had known for years—a warm man who never failed to brighten his day. As we chatted my heart raced; my mind racing, searching for a way to anchor myself in the moment. Memories flooded back—a shared cup of coffee, late-night chats, and laughter that spilt like warm honey over the years.
“Hey, Robert, you’ve been on my mind,” Ken said, his smile radiant with kindness.
I could feel a warmth growing within —this connection, this recognition, was a beacon against my lurking fears. We spoke for a while longer, sharing stories from the past; it was comforting to realise that some memories were so strong, that they resisted being swept away by the tides of forgetfulness.
“Do you ever worry about forgetting?” I blurted out, the question hanging between them, raw and vulnerable.
Ken chuckled lightly, a knowing smile in his eyes. “Oh, mate, we all forget things. It’s just how life works! What matters is keeping the ones you love close and sharing laughter—those are the memories worth holding.”
As we parted, with a warm and lingering handshake, I felt the anxiety ease just a fraction. Perhaps forgetting wasn’t such a monster after all, but a humbling part of being alive. And as I continued to walk, feeling lighter with each step, I resolved to seek joy instead of dread.
That evening, standing in front of the mirror, I took a deep breath, armour against worry. “If I forget, I want to forget the things that weigh on me. I’ll remember the laughter, the sunshine, the connections.” And in embracing that, I found hope—a fragile but potent flicker that reminded me I was more than my fears.
In the days that followed, I began to shift my narrative. Whenever I would forget a name or lose my train of thought, I would take a moment to appreciate what I did remember, to cherish those slices of life that helped shape me. I started walking more, connecting with people, and nurturing memories worth holding onto.
Maybe I wouldn't conquer the fear of fading away, but I could certainly refuse to let it define me. And somehow, I found that remembering joy was the best antidote against the shadows that lurked around my mind.
robert
From the government, help is needed to fund research and provide realistic care to the loved ones and family.
Training in doctors surgery hospital to ALL STAFF who may cone into contact with Dementia Alzimpher. Ways to identify if a hospital patient has this disease so everyone knows and act accordingly.
Our family storey started with a phone call from My son Grandad couldn't remeber how to drive to home he didn't know where he was. He had done this trip for over10years . He couldn't read a watch or the paper any sense of time just went out of the window for him. He was finally diagnosed with vascular dementia. We knew a little bit of what would happen as my Aunty his sister was in a home lying in bed, fed by a tube no idea who her brother , husband ,sons grand children were. She couldnt even move .
When dad was diagnosed he always said he would die before he ended up like his beloved sister.
So dad was diagnosed and we were sent away no help for him mum and us in how to support. Admiral nurses were not about then.life got more and more difficult.He forgot this was his home , and Mum and dad where in a hotel. He forgot how to read music and play the piano so he couldn't go to the choirs anymore. His fiends stopped coming to see he as he had no idea who they were.
We got carers too help mum . They sent ladies round dad lost his dignity
He was a proud gentle amazing intellegent man who was high up in BT.His family and grandchildren was his life but he had no idea who they were and looked scared when they visited. This upset them so much they stopped visited him.
Mum was becoming ill with the stress of it all so after some resbite we found a local home close to mum that was ideal.However dad got urine infection and ended up in hospital.Thats when things got worse.
It was obvious the staff weren't trained to deal with thus disease. They would insist calling him be his first name he was always called by his 2nd name so he would never responded and looked petrified when we visited as he had no idea where he was. One night the nurse came to move his position called him by his first name got hold to roll him over. It was dark he was frightened he lashed out caught the nurse on her arm. My gentle father was reported he was labelled aggressive and at 79 put on behaviour report. The poor nurse didn't want that to happen but it was protocol.
That's why training and identifying patient who have this disease in hospital is vital so both parties are treated fairly.
As a result the home mum wanted which was close to their home refused too take dad, even though the hospital said they shouldn't have reported it and the phycologist insisted he was no danger . So mum had to travel20 miles a day.
That was another dip on the dementia rollercoaster.
Luckily where dad went for respite took him. They were shocked about the treatment dad got as he was the most kindest gentleman they said.
Dad was happy in his own world now .He would tell us stories that made no sense or asked for his dinner at this posh hotel
But he was deterioting fast now he stopped walking,he stopped conversation but worse he forgot how to swallow and chew so would pouch his food like a hamster. We are all conviced he knew and didn't want to be like his sister so on the morning of 23 December dad passed away
Nobody was there which stays with us forever .It broke mum as she couldn't say goodbye too her man of 65yrs married
Apparently he wanted cup of tea Craig went to make it when he got back dad had passed. So quick but always said he didn't want to end up like his sister. We are convinced he new and gave up .
Cause of death dementia was written on his death certificate.
Training in doctors surgery hospital to ALL STAFF who may cone into contact with Dementia Alzimpher. Ways to identify if a hospital patient has this disease so everyone knows and act accordingly.
Our family storey started with a phone call from My son Grandad couldn't remeber how to drive to home he didn't know where he was. He had done this trip for over10years . He couldn't read a watch or the paper any sense of time just went out of the window for him. He was finally diagnosed with vascular dementia. We knew a little bit of what would happen as my Aunty his sister was in a home lying in bed, fed by a tube no idea who her brother , husband ,sons grand children were. She couldnt even move .
When dad was diagnosed he always said he would die before he ended up like his beloved sister.
So dad was diagnosed and we were sent away no help for him mum and us in how to support. Admiral nurses were not about then.life got more and more difficult.He forgot this was his home , and Mum and dad where in a hotel. He forgot how to read music and play the piano so he couldn't go to the choirs anymore. His fiends stopped coming to see he as he had no idea who they were.
We got carers too help mum . They sent ladies round dad lost his dignity
He was a proud gentle amazing intellegent man who was high up in BT.His family and grandchildren was his life but he had no idea who they were and looked scared when they visited. This upset them so much they stopped visited him.
Mum was becoming ill with the stress of it all so after some resbite we found a local home close to mum that was ideal.However dad got urine infection and ended up in hospital.Thats when things got worse.
It was obvious the staff weren't trained to deal with thus disease. They would insist calling him be his first name he was always called by his 2nd name so he would never responded and looked petrified when we visited as he had no idea where he was. One night the nurse came to move his position called him by his first name got hold to roll him over. It was dark he was frightened he lashed out caught the nurse on her arm. My gentle father was reported he was labelled aggressive and at 79 put on behaviour report. The poor nurse didn't want that to happen but it was protocol.
That's why training and identifying patient who have this disease in hospital is vital so both parties are treated fairly.
As a result the home mum wanted which was close to their home refused too take dad, even though the hospital said they shouldn't have reported it and the phycologist insisted he was no danger . So mum had to travel20 miles a day.
That was another dip on the dementia rollercoaster.
Luckily where dad went for respite took him. They were shocked about the treatment dad got as he was the most kindest gentleman they said.
Dad was happy in his own world now .He would tell us stories that made no sense or asked for his dinner at this posh hotel
But he was deterioting fast now he stopped walking,he stopped conversation but worse he forgot how to swallow and chew so would pouch his food like a hamster. We are all conviced he knew and didn't want to be like his sister so on the morning of 23 December dad passed away
Nobody was there which stays with us forever .It broke mum as she couldn't say goodbye too her man of 65yrs married
Apparently he wanted cup of tea Craig went to make it when he got back dad had passed. So quick but always said he didn't want to end up like his sister. We are convinced he new and gave up .
Cause of death dementia was written on his death certificate.
Ann
My husband was diagnosed with altzeimers 12 years ago, I am his sole unpaid carer, we do not have any family who can help out either.
My husband is now doubly incontinent, can only manage a few faltering steps, he cannot hold a conversation.
We had hoped to have a few years of retirement together but that didn't happen due to his onset of altzeimers.
My life is very lonely as I am practically house bound with him.
My health is deteriorating and I am worn-out and tired as a full night's sleep would have be a luxury.
I am also worried if I should die before him as who would look out for him. ⁸
My husband is now doubly incontinent, can only manage a few faltering steps, he cannot hold a conversation.
We had hoped to have a few years of retirement together but that didn't happen due to his onset of altzeimers.
My life is very lonely as I am practically house bound with him.
My health is deteriorating and I am worn-out and tired as a full night's sleep would have be a luxury.
I am also worried if I should die before him as who would look out for him. ⁸
Deborah
My husband Frank was diagnosed with early onset Alzheimer’s at 59, he is now 73. We felt something was wrong at the time as he was making so many bad blunders in his business. He was always very hard working and he gave me and our 5 sons a very good life. He was able to drive for a few years but sadly it had to stop. Every time I visit him, I am devastated, more now than before. We were a very sociable couple and had many ‘friends’ and family, this dwindled down to a few friends and a couple of family who stood with me.
The night before I visit him I have to take a diazepam and sometimes the next night as well.
I struggle about visiting him, it is the long goodbye indeed.
We were married 50 years in March and I was 70 in August. No celebration for either. He has been in care 4 years from beginning of October.
He didn’t want to go into care but I had told him that when he forgot who I was I would put him in care. Personally I think people who guilt trip family are being very selfish. I would prefer to go into care than have our family take on the burden of care. My husband is now incontinent, struggles to use cutlery, forgets I’ve visited 5 minutes after I leave.
The night before I visit him I have to take a diazepam and sometimes the next night as well.
I struggle about visiting him, it is the long goodbye indeed.
We were married 50 years in March and I was 70 in August. No celebration for either. He has been in care 4 years from beginning of October.
He didn’t want to go into care but I had told him that when he forgot who I was I would put him in care. Personally I think people who guilt trip family are being very selfish. I would prefer to go into care than have our family take on the burden of care. My husband is now incontinent, struggles to use cutlery, forgets I’ve visited 5 minutes after I leave.
Elizabeth Ann
For nearly 20 years I had been trying to get my husband's doctor to test him for Alzheimer's I tried to see his doctor he wouldn't see me I rang his doctor but wouldn't help my husband until my husband asked for help he couldn't he's ill. In the end I went with my husband to the doctor's and said I wouldn't leave until he was tested for Alzheimer's which he did he failed. He was diagnosed in 2019 after all those years of asking. Doctors should listen to wife's husband or partners we live with them we see them change daily
Now he's gone way beyond help he's verbal and physically abusive this could have been slowed down
I've lost my husband much to soon
Now he's gone way beyond help he's verbal and physically abusive this could have been slowed down
I've lost my husband much to soon
Barbara
My mum was diagnosed with Alzheimer's and vascular dementia in 2017 just a couple of years after Dad died. As mum deteriorated my sisters and I had to help her with shopping, cooking, cleaning and gardening. We eventually had to pay for home carers twice a day. Thank goodness we got this in place before the pandemic hit. By the end of 2022 mum needed personal care so we found a care home for her. Mum had to self fund so we had to put her house up for sale. The financial worry for us was huge. The local authority funded part of her care for 12 weeks so we could get the house sold but this ended up taking 18 months. We were at the stage of applying for loans when mum died. We had been unpaid carers for 6 years. It nearly broke us. We don't begrudge our mum anything, we loved her dearly, but the lack of support compared with our cancer journey with Dad was stark. It is not fair.
Leigh
My husband has been diagnosed by a consultant Neurologist. Firstly in 2020 with Alzheimer’s disease and secondly with Lewy bodies dementia in 2023. Now discharged from the consultant as there is nothing else to be done. Since then we have completely lost hope, my husband’s health just continues to deteriorate and he hasn’t even reached 71 yrs yet. None of the referrals made to local teams for help have materialised they were made in February 2024 after our final visit to the Neurologist. Since then my husband has attended a local day centre found and paid for independently by us, which gives me (his wife) respite from caring duties which are now becoming increasingly difficult . Unfortunately as part of this new Governments cuts the day centre is going to be closed leaving us and many others with nowhere to put our loved ones safely in care for the day.
So to answer to your question, absolutely life changing for us as all our hopes and dreams for a relaxed and happy retirement have gone. Now days are all around my husband’s health issues and caring for him which of course I am happy to do, but honestly this is incredibly stressful and exhausting.
Therefore going forward the Government needs to make sure the health service can deliver accurate diagnosis with a care pathway to follow around the stages these diseases are likely to present. . This would help with planning and optimising the best possible care available and give reassurance to those with the caring duties.
A named Doctor plus team of specialists allocated to each individual with these cruel neurological diseases. Allowing for regular consultations, every three months.
Day centres at a reasonable cost absolutely essential to give space and time for carers to rest and attend to necessary activities that are impossible to do when tied up with caring duties day and night at home.
Public awareness needs much more attention as much as a Cancer diagnosis. I wish the Government understood how devastating these diseases are, worse in a way than Cancer as there really is no hope for a cure at present and in my opinion not likely to be in the near future. The media should be stopped from hyping up the possible cure for these diseases as it does not exist. Unethical to raise false hopes for such a vulnerable group.
I think end of life care should be part of continuing health care, properly funded by the NHS in nursing homes that are adequately set up to care for these challenging diseases, perhaps using a hospice model. Many homes do not always understand how best to manage care for this extremely vulnerable group of patients added to which the cost of care is far too much as most people simply can’t afford this care. Hence behind all these closed doors are exhausted, stressed and desperately lonely cares struggling to give their all often with absolutely no help. One could describe the feeling of being rudderless at times no proper direction and adrift much of the time.
So to answer to your question, absolutely life changing for us as all our hopes and dreams for a relaxed and happy retirement have gone. Now days are all around my husband’s health issues and caring for him which of course I am happy to do, but honestly this is incredibly stressful and exhausting.
Therefore going forward the Government needs to make sure the health service can deliver accurate diagnosis with a care pathway to follow around the stages these diseases are likely to present. . This would help with planning and optimising the best possible care available and give reassurance to those with the caring duties.
A named Doctor plus team of specialists allocated to each individual with these cruel neurological diseases. Allowing for regular consultations, every three months.
Day centres at a reasonable cost absolutely essential to give space and time for carers to rest and attend to necessary activities that are impossible to do when tied up with caring duties day and night at home.
Public awareness needs much more attention as much as a Cancer diagnosis. I wish the Government understood how devastating these diseases are, worse in a way than Cancer as there really is no hope for a cure at present and in my opinion not likely to be in the near future. The media should be stopped from hyping up the possible cure for these diseases as it does not exist. Unethical to raise false hopes for such a vulnerable group.
I think end of life care should be part of continuing health care, properly funded by the NHS in nursing homes that are adequately set up to care for these challenging diseases, perhaps using a hospice model. Many homes do not always understand how best to manage care for this extremely vulnerable group of patients added to which the cost of care is far too much as most people simply can’t afford this care. Hence behind all these closed doors are exhausted, stressed and desperately lonely cares struggling to give their all often with absolutely no help. One could describe the feeling of being rudderless at times no proper direction and adrift much of the time.
sarah
My husband had Alzheimer’s disease for 10 years. He died in November 2023. We lived a fairly normal life for about 8 years but then he had a fall and I had to call the paramedics. They said he had an irregular heartbeat and had to go to hospital. I think that started the decline. As soon as he got there they padded him up and wouldn’t let him go to the toilet by himself and because he then developed a UTI he was kept in bed for nearly three weeks. He’d been going to the toilet himself, walking upstairs to bed, showering and shaving himself up til then. When he came home we had to have a hospital bed downstairs and carers four times a day because he couldn’t walk. He still knew everyone and could hold a proper conversation with people. About July 2023 we noticed some deterioration. He was constantly getting UTI’s and these made him hallucinate and shout and ramble. He also wanted me to be with him constantly. In the end we had to get a night carer as well. Things were becoming very difficult at that point. He was never physically aggressive but very aggressive verbally especially when he had a UTI. He also developed a chest infection which took a long time to clear. He went into a Nursing home for respite care in September 2023 and I was persuaded it would be better for him to stay there but it was against my better judgment. The home and care were excellent. I went every day and spent six or seven hours with him but after a few weeks the home told me that the doctor had been to see him and his body was packing up and he only had a few weeks to live. Needless to say my family and I were all devastated. He still knew everyone and could still hold a conversation but was struggling more with his words. He developed another cough and chest infection and was then sleeping most of the time. He then started to refuse food and drink and eventually passed away peacefully in November. We were lucky because for eight years he and I were able to lead a fairly normal life and he didn’t lose his mental abilities until the last few months but for the last couple of years we weren’t able to go out apart from in an ambulance to hospital appointments because he couldn’t walk and he was too heavy for me to push him in a wheelchair and he used to get so frustrated. This must be the cruelest disease. The sufferer has all their dignity taken away. My husband knew when he wanted to go to the toilet until a couple of weeks before he died but was unable to get there. He became too weak to stand on a sarastedy and had to be hoisted from his bed to the chair each day. He hated having to wear pads and he was terrified of the hoist. It’s heartbreaking watching the person you love become a completely different person and wanting to do things for themselves but can’t and gradually becoming more and more helpless and vulnerable. For them too it’s a living death. You don’t just grieve when they die you’ve had months and years of grieving seeing them deteriorate. Any new drugs that are found to try and combat this terrible disease have got to be funded by NICE. It’s not fair on the sufferer or their families to think there might be something that would prolong even if not cure in existence but because of cost it’s not available. .
Elaine
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