Dementia Support Line
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Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?
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My lovely was taken from by a massive stroke. Before...
Dad was diagnosed with Alzheimer’s in 2017. It...
My mum and dad were inseparable; they owned a...
Hello, my 82y/o mother, Bernadette, was diagnosed in...
My wife, then 72, in 2020, was clearly having...
My dad was diagnosed with dementia in 2019.
He is...
My wife, Cathy, had been having memory problems for some time but would not acknowledge it was dementia. She continued in denial but was ultimately referred to a...
My dad was referred by our GP on 22/01/18 and finally...
Last year my lovely wife Joyce died from cancer and...
We lost my mum to Dementia 22/9/2023. She had...
My Mum was diagnosed with Early Onset Alzheimer’s...
I was diagnosed with early onset of alzheimers in...
My lovely was taken from by a massive stroke. Before that, for four years she was in a fantastic care home suffering with dementia. I tried my best to keep her at home but. Vascular dementia beat me and no matter how hard I tried to cope I became a stranger to her and me her full time carer. The kindest thing was to place her in a home where she was looked after professionally and with loving care
Dad was diagnosed with Alzheimer’s in 2017. It wasn’t a total shock. We’d noticed him becoming forgetful and had noticed unopened post stacking up. Sadly Mum, who had always relied Dad, didn’t take the news well and retreated into herself whereas Dad didn’t really understand or comprehend what was happening, he had always been the one who dealt with everything from driving, shopping to paying all the bills. A keen runner over the years who had completed many half and full marathons including the London marathon 3 times. A man who also loved his profession as a train driver.
I really tried as hard as I could to help. Between having a young family of my own and working full time it was not easy. Weekends were taken up with helping my parents with all their chores, shopping and cleaning plus trying to spend time with my own family. My brothers helped as much as they could but lived a long way plus also worked full time. Try as I might, I engaged help from outside parties but both parents always refused help and thought they could cope as in their minds nothing was wrong.
Sadly Mum passed in December 2022. We had the terrible decision of having to place Dad in nursing care. I offered him many times to come and live with me and my family but sadly he always said he was waiting for Mum to come home as he was unable to comprehend that she had gone.
Dad passed away 2 days shy of his 85th birthday on 02 March 2024.
On this Fathers Day I struggle with the knowledge for the first time I am unable to buy Dad a card and gift. A wonderful father who always put his wife, children and grandchildren first.
Thank you to Alzheimer’s Society and all those who work and experience living with dementia. Being able to talk to those who have an understanding of what we were going through will always be appreciated.
I really tried as hard as I could to help. Between having a young family of my own and working full time it was not easy. Weekends were taken up with helping my parents with all their chores, shopping and cleaning plus trying to spend time with my own family. My brothers helped as much as they could but lived a long way plus also worked full time. Try as I might, I engaged help from outside parties but both parents always refused help and thought they could cope as in their minds nothing was wrong.
Sadly Mum passed in December 2022. We had the terrible decision of having to place Dad in nursing care. I offered him many times to come and live with me and my family but sadly he always said he was waiting for Mum to come home as he was unable to comprehend that she had gone.
Dad passed away 2 days shy of his 85th birthday on 02 March 2024.
On this Fathers Day I struggle with the knowledge for the first time I am unable to buy Dad a card and gift. A wonderful father who always put his wife, children and grandchildren first.
Thank you to Alzheimer’s Society and all those who work and experience living with dementia. Being able to talk to those who have an understanding of what we were going through will always be appreciated.
Rachel
My mum and dad were inseparable; they owned a sub-post office; worked side-by-side and spent every hour of every day together.
Their love for each other was all consuming, and was such a joy to see.
Unfortunately, mum had a stroke in 2021; which ultimately resulted in the onset of vascular dementia.
Whilst my dad (85) initially was able to care for her at home; she had a severe neurotoxic reaction to a change in medication. This notably accelerated her dementia.
Within a matter of days, her presentation changed dramatically, this especially with the increase in aggression, agitation.
As if the vascular dementia was not enough, she was also diagnosed with BPSD, comorbid depression and paranoia.
My dad was devastated, and felt (at that point in time) he could no longer meet her care needs at home any longer; hence we sought a suitable alternative.
Mum was assessed and required 24-hour constant one-to-one care/monitoring.
Unfortunately, two dementia friendly care homes, they were unable to effectively manage her behaviour.
In the first care home she was left unattended and pulled a wardrobe on top of herself, resulting in severe injuries. At the second EMI care home, notice was served (out of the blue) after 7 weeks of residency, because her care needs far exceeded what the care home had anticipated.
No local care home was willing to accept mum owing to her behaviour and the disruption she caused; the only other option offered was that of a mental health facility.
We were unwilling to put mum through any further torment and upset; being separated from my dad was quite obviously having a detrimental effect to her well-being. Dad himself was very depressed, as he felt he was abandoning mum. Hence, he made the monumental decision to bring mum back home.
He was the only person whom could effectively manage (to some extent) her care needs. Mum just wanted to be with him, as she always had been.
Mum coming home, ensued in a huge battle with Continuing Healthcare.
Whilst the ICB were willing to fund my mum whilst she was in care homes, when she returned home, they ceased funding. They seemingly were of the opinion, because she had returned home, her care needs had dramatically reduced!
A DST meeting was a shambles. Everyone involved in mum’s care (social services, the mental health team, the carers, mum’s GP), where all in full support of mum receiving Continuing Healthcare funding. The assessor submitted a report which contradicted the viewpoints of all the professional healthcare members attending the meeting.
Whilst everyone involved in mum’s care could see she was drastically deteriorating; a stranger made the decision her healthcare needs did not warrant any funding.
Mum sadly passed away, 4 months after she was deemed ineligible for any funding.
She was at home, where she would have wanted to be; with her precious husband and her family surrounding her with all the love she needed.
I submitted an appeal to the ICB, and also raised an official complaint owing to the significant breaches of the National Framework by Continuing Healthcare at the DST meeting.
This complaint has now been escalated to the Ombudsman.
Out of the blue (and prior to an appeal), we have recently received a letter from the ICB that they have now decided to refund all the private care fees dad paid.
The letter has provided no explanation as to why there has been a change of heart by the ICB. We suspect, it could be they are aware the matter has been escalated to the Ombudsman and are trying to deflect their oversights.
Families caring for their loved ones have to endure so much stress, without constantly fighting for the support they rightly deserve.
We miss mum, every hour of every day, but hope that our fight with Continuing Healthcare may lead to lessons being learned and ensuring that in the future other vulnerable individuals are not treated the same way.
Their love for each other was all consuming, and was such a joy to see.
Unfortunately, mum had a stroke in 2021; which ultimately resulted in the onset of vascular dementia.
Whilst my dad (85) initially was able to care for her at home; she had a severe neurotoxic reaction to a change in medication. This notably accelerated her dementia.
Within a matter of days, her presentation changed dramatically, this especially with the increase in aggression, agitation.
As if the vascular dementia was not enough, she was also diagnosed with BPSD, comorbid depression and paranoia.
My dad was devastated, and felt (at that point in time) he could no longer meet her care needs at home any longer; hence we sought a suitable alternative.
Mum was assessed and required 24-hour constant one-to-one care/monitoring.
Unfortunately, two dementia friendly care homes, they were unable to effectively manage her behaviour.
In the first care home she was left unattended and pulled a wardrobe on top of herself, resulting in severe injuries. At the second EMI care home, notice was served (out of the blue) after 7 weeks of residency, because her care needs far exceeded what the care home had anticipated.
No local care home was willing to accept mum owing to her behaviour and the disruption she caused; the only other option offered was that of a mental health facility.
We were unwilling to put mum through any further torment and upset; being separated from my dad was quite obviously having a detrimental effect to her well-being. Dad himself was very depressed, as he felt he was abandoning mum. Hence, he made the monumental decision to bring mum back home.
He was the only person whom could effectively manage (to some extent) her care needs. Mum just wanted to be with him, as she always had been.
Mum coming home, ensued in a huge battle with Continuing Healthcare.
Whilst the ICB were willing to fund my mum whilst she was in care homes, when she returned home, they ceased funding. They seemingly were of the opinion, because she had returned home, her care needs had dramatically reduced!
A DST meeting was a shambles. Everyone involved in mum’s care (social services, the mental health team, the carers, mum’s GP), where all in full support of mum receiving Continuing Healthcare funding. The assessor submitted a report which contradicted the viewpoints of all the professional healthcare members attending the meeting.
Whilst everyone involved in mum’s care could see she was drastically deteriorating; a stranger made the decision her healthcare needs did not warrant any funding.
Mum sadly passed away, 4 months after she was deemed ineligible for any funding.
She was at home, where she would have wanted to be; with her precious husband and her family surrounding her with all the love she needed.
I submitted an appeal to the ICB, and also raised an official complaint owing to the significant breaches of the National Framework by Continuing Healthcare at the DST meeting.
This complaint has now been escalated to the Ombudsman.
Out of the blue (and prior to an appeal), we have recently received a letter from the ICB that they have now decided to refund all the private care fees dad paid.
The letter has provided no explanation as to why there has been a change of heart by the ICB. We suspect, it could be they are aware the matter has been escalated to the Ombudsman and are trying to deflect their oversights.
Families caring for their loved ones have to endure so much stress, without constantly fighting for the support they rightly deserve.
We miss mum, every hour of every day, but hope that our fight with Continuing Healthcare may lead to lessons being learned and ensuring that in the future other vulnerable individuals are not treated the same way.
Claire
Hello, my 82y/o mother, Bernadette, was diagnosed in September 2021. Her being diagnosed was important so that she could get the help she needed. My mom’s diagnosis has drastically changed our lifestyles. A cure, better resources and assistance for care.
Martha
My wife, then 72, in 2020, was clearly having 'memory problems' and would sometimes refer to it as dementia. I spoke to the doctor in November 2021, who referred us to the memory clinic; but the appointment took many weeks to come round for an initial assessment and provisional diagnosis in August 2022. It was a further 3 months until an MRI scan in October, enabled the formal diagnosis of vascular dementia with Alzheimer's in December. All the people I have spoken to, within the NHS and elsewhere, have been most considerate and helpful in assisting me to understand what behaviours were going on, but it was the waiting for action by NHS that made it hard.
Nick
My dad was diagnosed with dementia in 2019.
He is now 79 and previously to his diagnosis he was very fit with no health problems and took no medication for anything.
He had a very fit physique and worked hard all his life, outdoors and was a strong person
Looking back we can now say dad had symptoms probably a few years beforehand, just those small changes which at that time if he did know anything, he wouldn’t have said to us, in fact hisden it if he could.
Covid lockdown and mum and dad been just over an hour away for myself and my sister, followed by my mum diagnosed with breast cancer, it’s fair to say added pressure, upset, challenges and care for them for us all. My sister dealt with contacting a social worker for dad, she took care of paperwork, phone calls and dads overall who and what to do next sorts of things. We were all blind to the medical side and also no clue to what would follow, in how any help or needs we should get for them. My sister and I for around 17 months shared everything in travelling, staying with them, taking them to g.p hospital appointments, organising there finances, and basically exhausted to a point that we both knew we couldn’t carry on with all as we were doing, not physically or mentally, and I look back now and although it took a long time, dads social worker took the decision herself and that load off us to say it was time for dad to go into a home permenantly. I recall feeling a little shocked at that time, as if it felt almost too sudden or not expected? Probably as we were so used to been full on with it all it was as if the breaks had been put on and startled us a little 🙈my dad had been in the same home on multiple occasions for respite, and the home felt like a second family to us and only 20 min from there home. Mum is a tough cookie and I cannot begin to state how much health issues and operations she has had along the way she has quite a medical journey which she always goes in has what ever they need to do and carries on as if she went away for a spa or similar.
Her and dad had gone through pretty much every challenge in life that most couples find alarming 😩🤷🏽♀️but always strong and got on with it. Only now had they actually spent soooo much time together at home in there life, put covid on top and dad much worse with daily life and mum breast cancer which took a sad turn been much more advanced than 1st thought. Communication was very tense and me and my sister had to become taking charge and talking without mum and dad involved? This added more pressure as mum felt very uneasy and angry that we had took things on without her knowledge and dad was worsening by the day yet our hearts were breaking for him as mum wasn’t and couldn’t cope and dad got the brunt of it as she didn’t want to accept this huge life changing situation which was so overwhelming 🥲 I became my dads cater for weeks at a time to basically get him out go places and actually just have a laugh we were like kids and those memories I’ll keep forever, we just had fun got out and it allowed dad to be just that. It gave mum a rest and then I would cook etc and keep them both sane whilst sister got on with the sorting and talking she needed to do with social worker Gp hospital finances and look for all what needed to be done and in place I came home now and then to do what I could and then back where I’d say my mind had left my own life to do 12-15 month of live in carer at mum and dads. Today dad is in the same home settled and mum visits many days where she joins in too with the home as if she’s part of the team and her and dad both actually look well go out locally and laugh and get on as if they both just met❤️ yet dad is much much worse where he doesn’t know day month year or anything other than the moment he’s in yet has us and everyone laughing and probably helps everyone else in the home as they all have no mobility or little and it’s heartbreaking 🥲🥲to see him laugh to look only a short while ago who he was and how brutal this disease is! It’s as if it’s disbelief that there brain is dying each day as you watch it do so, feeling helpless as nothing can be done and yet this is what I would describe as the worse silent horrible medical incurable invisible condition which devastates many of the family there lives and YET affects so many? Of course each and everyone of us needs to SHOUT OUT!! As not only to be heard and make a difference to change that but NO one can SEE it no ONE would know it and NO one is expected to UNLESS you are part of it suffering with the thousands that are. Every family live differently and every household affected are unique and personal in there own life and challenges, there is no kind of rules you can put on paper to follow as such and waiting until you become a part of dementia in some way is not a roll of a dice you do or don’t NO one should live and watch loved ones exist to a point of cruelty and suffering it’s not acceptable to see a physical person who you love who you have known to be either your partner your parent your friend etc and live and care in a world which turns into isolated confused collapse from the world you knew and be alone until others like this offer there hand as there in that same place. It is not a medical issue in fighting to make them better it’s a world to which you no longer have but existing in it with no one to help to explain to give care to tell you where here to say it’s okay and guide you to give advice etc etc and not turn a blind eye or not acknowledge it because you don’t see it or hear it,,, it’s massive it’s here and it is not right to ignore this stories need to be read voices must be heard and has to be now? This as been here for many years the huge research the 1000’s who are diagnosed the education we have on this YET other than the ones suffering how the hell is there no trained employment caters and support there when this happens?? Why not it’s almost ALL hidden yet bursting to explode in the world before it’s accepted to have many people waiting to help you along in every way that just eases explains and helps you along? How the hell are we still just sharing amongst ourselves telling our own stories battling and crumbling by it today….why have we still not automatically got all resources right there for guidance why is there a fight for all the acknowledgement on top of it it’s like pot luck? Where you live? Your council? No homes who deal with such? In 2024 this is not acceptable in anyway because you don’t see it? There is more than enough knowledge but know follow on?😡going to mp’s and standing with thousands of signatures and fighting for? Because of ignorance and it’s hard enough to be having this on top it’s upsetting heartbreaking hard and needs to be offered right now to all with dementia who need it they all do need this and where screaming this to you where giving you stories so why is it not in place we watch some one we have known in life and taught us life itself reverse little by little and it’s an awful thing to watch and be alone we shouldn’t experience this in life and no one to be there it’s frightening it’s suffering and it needs to be just fair in our world
He is now 79 and previously to his diagnosis he was very fit with no health problems and took no medication for anything.
He had a very fit physique and worked hard all his life, outdoors and was a strong person
Looking back we can now say dad had symptoms probably a few years beforehand, just those small changes which at that time if he did know anything, he wouldn’t have said to us, in fact hisden it if he could.
Covid lockdown and mum and dad been just over an hour away for myself and my sister, followed by my mum diagnosed with breast cancer, it’s fair to say added pressure, upset, challenges and care for them for us all. My sister dealt with contacting a social worker for dad, she took care of paperwork, phone calls and dads overall who and what to do next sorts of things. We were all blind to the medical side and also no clue to what would follow, in how any help or needs we should get for them. My sister and I for around 17 months shared everything in travelling, staying with them, taking them to g.p hospital appointments, organising there finances, and basically exhausted to a point that we both knew we couldn’t carry on with all as we were doing, not physically or mentally, and I look back now and although it took a long time, dads social worker took the decision herself and that load off us to say it was time for dad to go into a home permenantly. I recall feeling a little shocked at that time, as if it felt almost too sudden or not expected? Probably as we were so used to been full on with it all it was as if the breaks had been put on and startled us a little 🙈my dad had been in the same home on multiple occasions for respite, and the home felt like a second family to us and only 20 min from there home. Mum is a tough cookie and I cannot begin to state how much health issues and operations she has had along the way she has quite a medical journey which she always goes in has what ever they need to do and carries on as if she went away for a spa or similar.
Her and dad had gone through pretty much every challenge in life that most couples find alarming 😩🤷🏽♀️but always strong and got on with it. Only now had they actually spent soooo much time together at home in there life, put covid on top and dad much worse with daily life and mum breast cancer which took a sad turn been much more advanced than 1st thought. Communication was very tense and me and my sister had to become taking charge and talking without mum and dad involved? This added more pressure as mum felt very uneasy and angry that we had took things on without her knowledge and dad was worsening by the day yet our hearts were breaking for him as mum wasn’t and couldn’t cope and dad got the brunt of it as she didn’t want to accept this huge life changing situation which was so overwhelming 🥲 I became my dads cater for weeks at a time to basically get him out go places and actually just have a laugh we were like kids and those memories I’ll keep forever, we just had fun got out and it allowed dad to be just that. It gave mum a rest and then I would cook etc and keep them both sane whilst sister got on with the sorting and talking she needed to do with social worker Gp hospital finances and look for all what needed to be done and in place I came home now and then to do what I could and then back where I’d say my mind had left my own life to do 12-15 month of live in carer at mum and dads. Today dad is in the same home settled and mum visits many days where she joins in too with the home as if she’s part of the team and her and dad both actually look well go out locally and laugh and get on as if they both just met❤️ yet dad is much much worse where he doesn’t know day month year or anything other than the moment he’s in yet has us and everyone laughing and probably helps everyone else in the home as they all have no mobility or little and it’s heartbreaking 🥲🥲to see him laugh to look only a short while ago who he was and how brutal this disease is! It’s as if it’s disbelief that there brain is dying each day as you watch it do so, feeling helpless as nothing can be done and yet this is what I would describe as the worse silent horrible medical incurable invisible condition which devastates many of the family there lives and YET affects so many? Of course each and everyone of us needs to SHOUT OUT!! As not only to be heard and make a difference to change that but NO one can SEE it no ONE would know it and NO one is expected to UNLESS you are part of it suffering with the thousands that are. Every family live differently and every household affected are unique and personal in there own life and challenges, there is no kind of rules you can put on paper to follow as such and waiting until you become a part of dementia in some way is not a roll of a dice you do or don’t NO one should live and watch loved ones exist to a point of cruelty and suffering it’s not acceptable to see a physical person who you love who you have known to be either your partner your parent your friend etc and live and care in a world which turns into isolated confused collapse from the world you knew and be alone until others like this offer there hand as there in that same place. It is not a medical issue in fighting to make them better it’s a world to which you no longer have but existing in it with no one to help to explain to give care to tell you where here to say it’s okay and guide you to give advice etc etc and not turn a blind eye or not acknowledge it because you don’t see it or hear it,,, it’s massive it’s here and it is not right to ignore this stories need to be read voices must be heard and has to be now? This as been here for many years the huge research the 1000’s who are diagnosed the education we have on this YET other than the ones suffering how the hell is there no trained employment caters and support there when this happens?? Why not it’s almost ALL hidden yet bursting to explode in the world before it’s accepted to have many people waiting to help you along in every way that just eases explains and helps you along? How the hell are we still just sharing amongst ourselves telling our own stories battling and crumbling by it today….why have we still not automatically got all resources right there for guidance why is there a fight for all the acknowledgement on top of it it’s like pot luck? Where you live? Your council? No homes who deal with such? In 2024 this is not acceptable in anyway because you don’t see it? There is more than enough knowledge but know follow on?😡going to mp’s and standing with thousands of signatures and fighting for? Because of ignorance and it’s hard enough to be having this on top it’s upsetting heartbreaking hard and needs to be offered right now to all with dementia who need it they all do need this and where screaming this to you where giving you stories so why is it not in place we watch some one we have known in life and taught us life itself reverse little by little and it’s an awful thing to watch and be alone we shouldn’t experience this in life and no one to be there it’s frightening it’s suffering and it needs to be just fair in our world
Julie
My wife, Cathy, had been having memory problems for some time but would not acknowledge it was dementia. She continued in denial but was ultimately referred to a specialst unit. The Doctor visited us at home and established she had Alzheimer's without Cathy realising she was being diagnosed. This opened the door to support and medication which was a huge comfort.
Howard
My dad was referred by our GP on 22/01/18 and finally diagnosed on 27/11/19 with mixed dementia (cognitive & functional) also Lewy body. He had been seen at the memory clinic 3 times and they always said that it was mild cognitive impairment. Once diagnosed things got better, Alzheimer’s Society helped me with information and benefits were applied for and I was made my dad’s appointee. I went to their support groups where I could cry and listen to others and what they were going through too. After all the confusion and hallucinations and fear and anxiety that my dad was going through and the wandering and getting lost, he was moved into residential care. The move was during a covid outbreak so I took him to the care home that day and had to leave him at the door and walk away I never even got leaving him down to his room and I wasn’t allowed a visit for 2 weeks, it was so heartbreaking. After 2 years he was then moved to nursing care due to aspiration. I am so happy now with the care that he is getting so it is vital to get that early diagnosis. My daddy is now settled and content and is quite a character, his carers and nurses just love him. He’s happy and healthy and his wee cheeky smile and twinkling eyes just melts my heart. I just agree with all that he tells me and listen to his wee stories. He doesn’t know me but he knows I’m familiar as his wee face lights up when I go to visit him. I can sleep at night now knowing that he’s getting the care that he needs and I will always be there for him.
Hazel
Last year my lovely wife Joyce died from cancer and Alzheimer's after 66 years of marriage. Our last year together was horrible, Joyce was no longer my lovely wife and companion, but a different and difficult person who rejected my care so I had to let here go into a care home for her last eighr months, Heart breaking
Lawrence
We lost my mum to Dementia 22/9/2023. She had suffered for least five years and we had give her the freedom to live in the support of carers at a care home. At first she was ok, but as years went by and onset of covid she got steadily worse. It was sad to see her, how she had deteriorated especially when she began losing her teeth-she was so proud of them as up till dementia took hold at 84 she had her own teeth and was so proud of this. She was also proud of her appearance but when we saw her clothes did not sit right on her.
The care home were excellent in her care, but dementia took hold till she could manage any longer.
The care home were excellent in her care, but dementia took hold till she could manage any longer.
Christine
My Mum was diagnosed with Early Onset Alzheimer’s aged 54 in 2010. We had noticed Mums behaviour change 4 years prior to this but when she approached her GP, was told her symptoms were normal for someone going through the Menopause. It took a change of GP and GP surgery for her to be sent for a full MRI scan which then led to a diagnosis. This was truly devastating for my Mum and the family, she finally had the medication and help to support her. I want a world without families having to fight for a diagnosis, for GPs to truly listen to families and not ‘pass off’ symptoms of Dementia for things such as the Menopause.
Jenny
I was diagnosed with early onset of alzheimers in 2020 after 2 years of tests. Helping to fight this been on 4 research programs and helped develop cogno speak with Sitran sheffield. This lead to been on bbc live to show my story. The hardest part of the illness is the wait to confirm my diagnosis . 2 years of been proded and poked had more brain scans than I can remember. Been married for 24 years and have the best family ever 3 children and 2 grandchildren. Making memories and keeping fit helps me along with a good diet
Mark
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Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?