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My mum was diagnosed with Young-Onset Alzheimer's...
My lovely husband Ian died at home in March 2024, he was diagnosed with Alzheimer's disease, at the age of 68, in October 2018. He was very fit and active but then...
My Grandma first started showing symptoms of dementia before covid and we managed to persuade her to go to the GP. The GP conducted a short assessment and told my...
My handsome husband was sadly diagnosed with Vascular...
We didn't see Dementia creeping up on my Mum, it seemed to come into her life in 'dribs & drabs'.
I first noticed that things weren't going well for Mum when I asked...
My wife first started showing the signs of dementia in 2009 but finally went to see her doctor in 2011 and after tests and interviews including myself she was...
My dad is an educated man with a degree from Oxford...
My mother’s memory problems started to show in 2019 when she was 83 and her GP referred her to the memory clinic. Lockdown the following year accelerated her memory...
Dementia….I had heard of it & read a little. I...
It was discovered after genetic testing that some...
I am a unpaid carer to my mum. Im 53 she is 74. ...
My beautiful Grandfather Don was always the life and soul of the party. My Grandparents moved from London to be near my parents in Gloucestershire. About a year later...
My mum was diagnosed with Young-Onset Alzheimer's Disease at 56. I was 20 at the time. From the point we noticed her symptoms, it took years to get a diagnosis for her. This meant years of confusion and uncertainty for all of us. Years with no support or direction to turn. Both before and after her diagnosis, we were met with disbelief and dismissal. People didn't understand.
We have watched all of mum's extended family and friends fall away over the years, as if dementia is contagious. Our little family has suffered behind closed doors for so long, moving from crisis to crisis. Mum went from a confident, bubbly, vivacious woman, who was incredibly independent, to needing 24hr care in just a few years. Now, 8 years on, she is in a complex needs nursing home and cannot do anything for herself. She has recently lost the ability to speak at all, and we can never be sure if she ever knows who we are.
Dementia has caused untold pain and stress for our family. Still, all of these years on, I cannot comprehend how this happened to mum, and how this happened to us. On top of all of that pain, it has been a constant battle with both health and social care to get the right support for mum which has really worn us down over the years.
It didn’t need to be like this.
We have watched all of mum's extended family and friends fall away over the years, as if dementia is contagious. Our little family has suffered behind closed doors for so long, moving from crisis to crisis. Mum went from a confident, bubbly, vivacious woman, who was incredibly independent, to needing 24hr care in just a few years. Now, 8 years on, she is in a complex needs nursing home and cannot do anything for herself. She has recently lost the ability to speak at all, and we can never be sure if she ever knows who we are.
Dementia has caused untold pain and stress for our family. Still, all of these years on, I cannot comprehend how this happened to mum, and how this happened to us. On top of all of that pain, it has been a constant battle with both health and social care to get the right support for mum which has really worn us down over the years.
It didn’t need to be like this.
Meghan
My lovely husband Ian died at home in March 2024, he was diagnosed with Alzheimer's disease, at the age of 68, in October 2018. He was very fit and active but then his deterioration was so rapid, it was if, he had gone off a cliff edge: loss of speech fluency, unable to go out alone, needing help to wash and dress, double incontinence, needing to be fed, unable to initiate automatic movement, so stuck in a chair, car or side of bed for minutes or an hour, complete loss of balance/falls, so needing be hoisted and sit in a till in space chair, use an electric bed, Interspersed with all of the foregoing were grand mal seizures, and later absence seizures, plus urine infections resulting in admissions to a and e,, where there are no facilities to care for people with advanced dementia, nowhere private to change continence pads. Long waits for my carer's assessment and his occupational therapy assessment were stressful. Further problems occurred with epilepsy medication causing him to be drowsy and sleep all of the time, and this exacerbated swallowing problems, so all food had to be liquidised and drinks thickened. He had a beautiful smile but during the last. year, this disappeared and he did not know me or his daughters and grandchildren.This was heartbreaking. We were lucky is that we had good support from family, friends, private carers and care agency staff. We encountered an excellent Social Worker along the way and the Council put in a wet room for him. The rapid response team provided some very useful equipment such as a hoist very quickly. Our GP surgery made sure that he was on the Respect pathway, so we could try and avoid unnecessary admissions to hospital, and we had a DNAR in place. Until the last few months, he had to fund his own care, and so his savings were decimated, and he was turned down for NHS continuing health care.
Catherine
My Grandma first started showing symptoms of dementia before covid and we managed to persuade her to go to the GP. The GP conducted a short assessment and told my grandma she didn't have dementia which meant she thought she was fine and would not go back for another memory assessment as her memory got worse. She said 'all my friends my age are like this'. In Spring 2023, she became unwell in her home where she had lived independently for over 25 years. She had delirium and was admitted to hospital. She was discharged to a care home because of her complex needs and on-going delirium. After a further year or trying to get a diagnosis (so another year without dementia medication, a care plan or sufficient support for her or my mum) she finally got a diagnosis of dementia. We believe that she has had dementia for a while and this caused her to self-neglect and ultimately need to be admitted to hospital from the complications. I wonder how much different her and our families life would be if she was diagnosed years earlier and got access to the medication she needed. She is now in a care home and has good days and bad days. It is heart-breaking to see her so far from her usual self and losing parts of herself everyday. I wish that the government would do more to get people diagnosed when they first develop symptoms so that if they have to live with this horrible disease they can do it as well as possible.
Megan
My handsome husband was sadly diagnosed with Vascular Dementia & Alzheimer’s 3 1/2 years ago at the age of 64.
Until now I have been in denial, if I didn’t talk about it then it’s not real - but reality has hit home as he sadly becomes less of the man I fell in love with day by day.
My one wish is that I, along with other carers of loved ones, could able to give up work to look after my husband at home in the future. The financial support for wonderful carers is sadly non existent - this needs to change in order to keep loved ones at home where they belong.
Until now I have been in denial, if I didn’t talk about it then it’s not real - but reality has hit home as he sadly becomes less of the man I fell in love with day by day.
My one wish is that I, along with other carers of loved ones, could able to give up work to look after my husband at home in the future. The financial support for wonderful carers is sadly non existent - this needs to change in order to keep loved ones at home where they belong.
Karen
We didn't see Dementia creeping up on my Mum, it seemed to come into her life in 'dribs & drabs'.
I first noticed that things weren't going well for Mum when I asked what she had had for her lunch & she described her meal totally, but when I checked the fridge, none of the items she had mentioned were around & her freezer hadn't been used for so long it was frozen shut with ice. This was back in the late 90s, when Dementia was not spoken about, it wasn't even really recognised.
With a young family, myself & my Mum battled on & it wasn't until I was on my knees not knowing what to do that help was provided by the Manchester Social Services. My question was 'Who helps the Carer?' & unfortunately, although 25 years forward, I feel that this is still very much the case. That conversation with someone who understood, helped me & my Mum no end.
My Mum & our family lived with her Dementia for 25 years +. We were the lucky ones, we made it work for us all. Her needs always came first & this caused a number of strains on my family, ending in divorce.
I feel that not much has really changed, I happened to change career & started to work for a Housing Company where my Role included supporting clients in Sheltered Accommodation who had Dementia & we were given intense training so we absolutely knew how to spot the signs & also to treat & support people with this dreadful illness. This training helped me so much with my own Mum, it was invaluable. But where do others who are not as lucky as me & can't navigate the internet get help & support?
My Mum's illness was diagnosed as Vascular Dementia & we had regular Check-ups at the GPs & sometimes with Consultants. I was very lucky & although my Mum had this disease, she just had 'blips' & anxiety from time to time which we were able to work through together. She always knew who we were & never lost her cheeky sense of humour!
With the help of a wonderful Care Service, Cleaner & Scheme Manager she was able to live at her Older People's Sheltered Scheme in a 1 bed flat for a number of years. Until she was 93 years old in fact, when her Dementia progressed from Vascular Dementia to Lewy Bodies & this meant that she had bouts of delusions & hallucinations which meant she was no longer safe on her own.
She moved into Residential Care & was there until she needed to go to hospital one early morning & unfortunately her illness had progressed to such a stage that her swallowing reflex was very difficult & some food had entered her lung. There was no way back from this & she passed away very peacefully with me by her side the next morning. She was at peace & died as she lived, in a quiet, happy place - with me, telling her that everything would be ok. We miss & think about her every day & always will.
I first noticed that things weren't going well for Mum when I asked what she had had for her lunch & she described her meal totally, but when I checked the fridge, none of the items she had mentioned were around & her freezer hadn't been used for so long it was frozen shut with ice. This was back in the late 90s, when Dementia was not spoken about, it wasn't even really recognised.
With a young family, myself & my Mum battled on & it wasn't until I was on my knees not knowing what to do that help was provided by the Manchester Social Services. My question was 'Who helps the Carer?' & unfortunately, although 25 years forward, I feel that this is still very much the case. That conversation with someone who understood, helped me & my Mum no end.
My Mum & our family lived with her Dementia for 25 years +. We were the lucky ones, we made it work for us all. Her needs always came first & this caused a number of strains on my family, ending in divorce.
I feel that not much has really changed, I happened to change career & started to work for a Housing Company where my Role included supporting clients in Sheltered Accommodation who had Dementia & we were given intense training so we absolutely knew how to spot the signs & also to treat & support people with this dreadful illness. This training helped me so much with my own Mum, it was invaluable. But where do others who are not as lucky as me & can't navigate the internet get help & support?
My Mum's illness was diagnosed as Vascular Dementia & we had regular Check-ups at the GPs & sometimes with Consultants. I was very lucky & although my Mum had this disease, she just had 'blips' & anxiety from time to time which we were able to work through together. She always knew who we were & never lost her cheeky sense of humour!
With the help of a wonderful Care Service, Cleaner & Scheme Manager she was able to live at her Older People's Sheltered Scheme in a 1 bed flat for a number of years. Until she was 93 years old in fact, when her Dementia progressed from Vascular Dementia to Lewy Bodies & this meant that she had bouts of delusions & hallucinations which meant she was no longer safe on her own.
She moved into Residential Care & was there until she needed to go to hospital one early morning & unfortunately her illness had progressed to such a stage that her swallowing reflex was very difficult & some food had entered her lung. There was no way back from this & she passed away very peacefully with me by her side the next morning. She was at peace & died as she lived, in a quiet, happy place - with me, telling her that everything would be ok. We miss & think about her every day & always will.
Dorothy
My wife first started showing the signs of dementia in 2009 but finally went to see her doctor in 2011 and after tests and interviews including myself she was diagnosed with early stages Alzheimer's. Deterioration was slow and in 2013 she had a fall in the garden and broke her femur, which meant over an hours operation with metal pin inserted. In 2015 she suffered two minor strokes after which her mobility, eyesight and hearing were badly affected , and in 2017 after a number of assessments by local mental health team she was placed in local care home. By that time she also had no idea who I was. The home was a specialist in dementia care and I cannot fault the love ,respect and attention she received until her death in April this year at the age of 87--we had been married 64 years. Although the home was about 4 miles away I visited several thousand times to visit and sit with her, although of course she had no idea who I was. I had to travel by car as it was only option and during the fifteen years till now I was not able to take a holiday ---in fact even if I could have afforded it I would have felt guilty, but I do now feel I have missed fifteen years of normal life which I am sure many others will have felt the same, so dementia is an evil disease which so drastically affects the lives of their loved ones, and carers like myself will know only too well that little or no financial help is available from government or other sources.
Clive
My dad is an educated man with a degree from Oxford he had a high powered job in banking. He is 89 and lives with mum who is 88 and has an Alzheimer's diagnosis.
Dad now is scared and confused after having a stroke and a diagnosis of vascular dementia. He can call me up to 30 times a day
'who owns my house?' 'do I have any outside space' 'how does the shopping man know what to deliver'. If mum isn't in the room 'what am I meant to be doing where am I meant to be?'. I have LPA, I regularly get calls asking where money comes from I have to explain that dad has a pension and he has doesn't need to worry, he spends hours studying bank statements but isn't able to process what he's reading. I've been accused of trying to take his house and control him when all I'm doing is the best that I can to make sure that they are supported, and cared for. Caring is the hardest thing I've ever done, luckily I have private carers who visit twice a day they are amazing, but its the time they aren't there when I get to pick up the pieces. We have cameras in the house which are a godsend, if dad calls I can see he's in his chair and nothing is as bad as he is describing.
It may sound dramatic but some days its a living hell.
Dad now is scared and confused after having a stroke and a diagnosis of vascular dementia. He can call me up to 30 times a day
'who owns my house?' 'do I have any outside space' 'how does the shopping man know what to deliver'. If mum isn't in the room 'what am I meant to be doing where am I meant to be?'. I have LPA, I regularly get calls asking where money comes from I have to explain that dad has a pension and he has doesn't need to worry, he spends hours studying bank statements but isn't able to process what he's reading. I've been accused of trying to take his house and control him when all I'm doing is the best that I can to make sure that they are supported, and cared for. Caring is the hardest thing I've ever done, luckily I have private carers who visit twice a day they are amazing, but its the time they aren't there when I get to pick up the pieces. We have cameras in the house which are a godsend, if dad calls I can see he's in his chair and nothing is as bad as he is describing.
It may sound dramatic but some days its a living hell.
Cathy
My mother’s memory problems started to show in 2019 when she was 83 and her GP referred her to the memory clinic. Lockdown the following year accelerated her memory loss and delayed her diagnosis. As I lived 60 miles away (and my brother at the other end of the country) we had unqualified carers going daily to help her with more and more aspects of daily life: meals and personal care, shopping, supervising medication and providing some company.
Things came to a head when one carer was taking a holiday, at the same time as me, and the other couldn’t provide the level of support my mother needed. We moved her to a home, near my bother as it was cheaper, and I got on with clearing out her home in order to sell it. It was painful having to dispose of a lifetime of her possessions before she was actually dead.
The house has now been sold which secures her care home for at least five years, but the last time I visited her, she asked me when she was going home…
Things came to a head when one carer was taking a holiday, at the same time as me, and the other couldn’t provide the level of support my mother needed. We moved her to a home, near my bother as it was cheaper, and I got on with clearing out her home in order to sell it. It was painful having to dispose of a lifetime of her possessions before she was actually dead.
The house has now been sold which secures her care home for at least five years, but the last time I visited her, she asked me when she was going home…
Suzan
Dementia….I had heard of it & read a little. I noticed Chris, my partner, a kind, quiet, easy going man, was forgetting recent events, conversations, some only one hour previous. I mentioned to a medical friend, who suggested I contact the doctor. They would do a test. Sadly, Chris was diagnosed with early Alzheimer’s.
Chris was an intelligent guy. Lots of degrees, spent his working life as a University Lecturer in engineering sciences. He was aware of his situation & we were both very upset. There was no counseling offered.
Some years on now, Chris can hardly walk, sleeps alot so difficult keeping meal times. He has lost the ability to work his iPad so lost touch with the outside world. His family live far away, some in Australia.
I love him dearly. Feel so so sorry for him. I feel helpless.
I know the above is very negative, but I can’t make it more positive. There is not much on offer socially in our location. There could be more.
Most importantly, the Government should do so much more financially. Chris 88, myself 78, with severe arthritis, are at home most of the time, we use more water, more energy cooking & heating, more wear/tear on appliances. We are now denied our Winter Fuel Payment!
In addition, we need domestic help. I am his full time carer but can’t claim Carers Allowance because I am a pensioner! However, a younger person can get the Allowance. But who would work 35hrs for £82.90 per week. That’s £2.34 per hr. An insult.
Money doesn’t buy a cure, but it makes life more comfortable, bearable……& possible.
Chris was an intelligent guy. Lots of degrees, spent his working life as a University Lecturer in engineering sciences. He was aware of his situation & we were both very upset. There was no counseling offered.
Some years on now, Chris can hardly walk, sleeps alot so difficult keeping meal times. He has lost the ability to work his iPad so lost touch with the outside world. His family live far away, some in Australia.
I love him dearly. Feel so so sorry for him. I feel helpless.
I know the above is very negative, but I can’t make it more positive. There is not much on offer socially in our location. There could be more.
Most importantly, the Government should do so much more financially. Chris 88, myself 78, with severe arthritis, are at home most of the time, we use more water, more energy cooking & heating, more wear/tear on appliances. We are now denied our Winter Fuel Payment!
In addition, we need domestic help. I am his full time carer but can’t claim Carers Allowance because I am a pensioner! However, a younger person can get the Allowance. But who would work 35hrs for £82.90 per week. That’s £2.34 per hr. An insult.
Money doesn’t buy a cure, but it makes life more comfortable, bearable……& possible.
Carol
It was discovered after genetic testing that some members of our family do not absorb adequate vitamin B12 after the age of 60, subsequently leading to Pernicious Anaemia, and a long, slow decline into dementia if not correctly treated. Even though I produced many research papers showing the symptoms and correct procedures, my sister’s doctors would not prescribe the regular B12 injections she needed to regain strength, balance and memory loss. For those seeking information, there is more about this devastatingly common problem on the Pernicious Anaemic Society’s excellent website.
Rosemarie
I am a unpaid carer to my mum. Im 53 she is 74. Mums Dementia was initially caused by lifestyle, through alcohol. I tried so hard to get her to stop, and my friends all said they would not have done what I had done. Fast forward to mums mid 60's her memory began to fail and she was diagnosed with mixed dementia. Her partner abandoned her and left her in a hospital where she spent 8 months, homeless and scared. I was with her everynight after work, willing her to get better. The social workers got involved and all they wanted to do was out her in a home. My mum is strong willed and eventually we managed to sort out a bungalow. She has adaptive equipment and is happy. The hardest thing is how lonely it feels when mum is calling me about 20 times as she does not remember calling me, I sometimes just cry. We do have lots of good days though and this is what I hold on to. Mum can be so funny and... shes my mum. I have a wonderful support worker who goes in to mum and she also has carers that enable me to now work, but Im tired and can only work part time because of this. I dont earn that much because of this. We need to look at the way we look at the future of homes, more like Norway who have villages and embrace lovely spaces for their residents when the time comes. I do resent the fact that my family do not help me and worry for the future as I dont have children or a partner if I get dementia myself so really want the goverment to look at long term solutions and give something to those long time carers who cannot work full time but also do not claim benefits.
Esther
My beautiful Grandfather Don was always the life and soul of the party. My Grandparents moved from London to be near my parents in Gloucestershire. About a year later they noticed my Grandfather hiding post and often sitting there in conversation going blank and silent. A few minutes later he would come back and say “I have had one of those funny moments haven’t I”? 2 years later he was diagnosed with Vascular Dementia. No one really understood his diagnosis at the time. Gradually his memory declined and he would try and get outside the house and wander. Very little support, advice and guidance was given to the family in terms of how to manage this. My Parent’s eventually moved my Grandparent’s into their small home to care for my Grandfather on a daily basis. Until you witness this incredibly cruel disease yourself you have no idea the challenges that this brings. The constant monitoring, care and reassurance and the decline of someone who was so animated slowly deteriorating in front of you. The constant fright that when you enter their bedroom that night to give medication that they don’t know who you are! The constant battle that you face every day to give them the quality of life and care they deserve on your own. You feel you are at breaking points at times and this has to change.
Sharon
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?