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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...
Our amazing dad grandad passed away with vascular dementia the Xmas before covid hit. Mum god bless her looked after him till her health was being affected
. They had...
My Husband, a very active 69 year old who within a...
Born in 1949, I was a clever boy at school, passed...
Eileen and I met in 1968 when I went with two friends...
My mum Jean was diagnosed with Alzheimer’s disease...
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
Our amazing dad grandad passed away with vascular dementia the Xmas before covid hit. Mum god bless her looked after him till her health was being affected
. They had been together for 65years. He enjoyed the party but didn't know why. He was diagnosed 4 years earlier but we think he had it long before . He was 87 when he passed peacfully in his home . My mum never got over it .luckily he was in thus home for respite for mum so they new my gentle dad. In the September he was admitted to the hospital I'll not name as he had a urine infection. He had no idea where he was he was scared.There was no specialist dementia nurses. One evening apparently a nurse tried to turn him in the middle of the night calling him by his first name. He didn't recognise that name was never called by that name . So scared he lashed out and caught a nurse. He was then labelled violent. The nurse was so upset but protocol meant he was labelled violent and a man of 87 was put on behavior report. That meant the home mum and organised close to their home woukd not take him. It was them who told us of the incident not those in charge of his care.
No other home would touch him dad was the most gentlest man. Even the physiotherapist he had to see said he wasn't a danger to anyone. It was circumstances . Late at night no idea were he was people shouting a name he didn't know he was scared.
Thankfully the respite home who knew him would take him. That was September he was happy but had know idea who the family was and mum . It broke her heart . It broke the grandchildren their beloved grandad was just a body. A blessing he passed away 23rd December.4 years . The death certificate said dementia cause if death. He always said he didn't
want to be in a home.
I wish people really understood. Uou see your loved ones disappear. Their body Is there but the have no idea who you are. Dad woukd look at as us with scared eyes that haunts me forever. My amazing kind gentle dad.
Please help others its too late for us .To the government invest in research this disease that kills more people in UK and to reverse NICE decision and allow this new drug on NHS
. They had been together for 65years. He enjoyed the party but didn't know why. He was diagnosed 4 years earlier but we think he had it long before . He was 87 when he passed peacfully in his home . My mum never got over it .luckily he was in thus home for respite for mum so they new my gentle dad. In the September he was admitted to the hospital I'll not name as he had a urine infection. He had no idea where he was he was scared.There was no specialist dementia nurses. One evening apparently a nurse tried to turn him in the middle of the night calling him by his first name. He didn't recognise that name was never called by that name . So scared he lashed out and caught a nurse. He was then labelled violent. The nurse was so upset but protocol meant he was labelled violent and a man of 87 was put on behavior report. That meant the home mum and organised close to their home woukd not take him. It was them who told us of the incident not those in charge of his care.
No other home would touch him dad was the most gentlest man. Even the physiotherapist he had to see said he wasn't a danger to anyone. It was circumstances . Late at night no idea were he was people shouting a name he didn't know he was scared.
Thankfully the respite home who knew him would take him. That was September he was happy but had know idea who the family was and mum . It broke her heart . It broke the grandchildren their beloved grandad was just a body. A blessing he passed away 23rd December.4 years . The death certificate said dementia cause if death. He always said he didn't
want to be in a home.
I wish people really understood. Uou see your loved ones disappear. Their body Is there but the have no idea who you are. Dad woukd look at as us with scared eyes that haunts me forever. My amazing kind gentle dad.
Please help others its too late for us .To the government invest in research this disease that kills more people in UK and to reverse NICE decision and allow this new drug on NHS
Ann
My Husband, a very active 69 year old who within a few months was repeatedly repeating himself, which raised alarm bells, so I set about seaking help from our GP which from our first appointment began the journey of referrals, within 10 months having being to numerous appointments went to our last appointment to be told ( well Steve you have Alzheimer’s) so from stepping out of that door to be told to go home and live your life (what a life) if you have ever lived 24/7 with your soulmate to deteriorate at such a speed in front of your eyes it’s just Human torture mentally.
Jan
Born in 1949, I was a clever boy at school, passed the 11+ exam and went to the Royal Grammar School in Guildford, then to Trinity College, Cambridge for my MA degree in Mechnical Sciences. Subsequently, I was promoted to Wing Commander in the RAF (my first career), played rugby at Twickenham for the UK Combined Services against the French Armed Forces, and later became a World Champion in Advanced Aerobatic competition (my second sporting career). I can still visualise the bungalow in which I was born (1949) and the route to walk, therefrom, to my primary school. I also have recollection of the village's Elizabethan Coronation celebration in 1953. Now, following in the footsteps of my maternal grandfather, who lived to be 99 years old, I have got a very full brain and thus suffered a dementia (or perhaps "fullmentia") diagnosis, in the name of Mr. Alzheimer. I struggle to remember things that have happened more recently and this places a high burden on my wife.
My principle enquiry concerns any scientific knowledge of the actual capacity of our brains. Having lived through the Digital Revolution, we all now talk easily about megabytes and gigabytes of computer memory, but I have never heard these units used to qualify the capacity of a human (or any other animal) brain. So an answer to that question would be very valuable and may resolve "What did I do to get this?" issues for a number of individuals.
So, can we start talking about "FULLMENTIA"??? Over...
My principle enquiry concerns any scientific knowledge of the actual capacity of our brains. Having lived through the Digital Revolution, we all now talk easily about megabytes and gigabytes of computer memory, but I have never heard these units used to qualify the capacity of a human (or any other animal) brain. So an answer to that question would be very valuable and may resolve "What did I do to get this?" issues for a number of individuals.
So, can we start talking about "FULLMENTIA"??? Over...
Alan
Eileen and I met in 1968 when I went with two friends to a beginners’ ballroom dancing class. She was the teacher. She was bright, confident and totally in control of herself and the pupils in her classes. We soon became a couple and were married in 1970, and Eileen became a stay at home mum.
In July 2020 she was diagnosed with Alzheimer’s and my Eileen started to disappear. At first the signs were very subtle, but that couldn’t last, and the Eileen who could once tango or jive with the best now has to be guided into the shower; which she calls the ‘place where the water comes out’.
As far as we as a couple are concerned, she recognises me as the person that is always there looking after her, but has to be reminded on an hourly basis who I am.
I wake up each day knowing that another piece of the woman that I met and fell in love with all those years ago will have gone during the night, and there is nothing I can do about it.
I am angry at the world for not taking this vile disease seriously, and treating it as a natural condition of ‘old’ people. I recently sent the AS campaign letter to my MP, who replied with stock statistics and platitudes, but no sign that he had even understood its purpose and what we are asking of our parliament.
In July 2020 she was diagnosed with Alzheimer’s and my Eileen started to disappear. At first the signs were very subtle, but that couldn’t last, and the Eileen who could once tango or jive with the best now has to be guided into the shower; which she calls the ‘place where the water comes out’.
As far as we as a couple are concerned, she recognises me as the person that is always there looking after her, but has to be reminded on an hourly basis who I am.
I wake up each day knowing that another piece of the woman that I met and fell in love with all those years ago will have gone during the night, and there is nothing I can do about it.
I am angry at the world for not taking this vile disease seriously, and treating it as a natural condition of ‘old’ people. I recently sent the AS campaign letter to my MP, who replied with stock statistics and platitudes, but no sign that he had even understood its purpose and what we are asking of our parliament.
John
My mum Jean was diagnosed with Alzheimer’s disease in May 23, just after her 80th birthday, although signs of dementia had been prevalent for a couple of years. The pandemic took its toll on mum as she was on her own. We suspected it was dementia in summer 22 but it took quite 8 months to get a diagnosis and some medication. The medication really helped mum with her anxiety and memory at first. Mum came to live with me my husband and then 12yr old son in September 22. We have seen at close hand how this disease changes a person. At first I found it difficult to adjust and got irritated with mum’s forgetfulness and reliance on me for many things she had not long ago been so capable of doing herself. I no longer had her highly valued support but was suddenly her main support and carer.
I also found her character changes difficult to accept and understand at first - missing the empathy and compassion. Now that we have adjusted we’re focused on making every day as good as it can be for mum. I’m not working at the moment and am looking for work that fits in with looking after mum. Mum has recently started an Age UK dementia club and although she didn’t want me to leave her there for the day at first, she’s now made friends and absolutely loves it. It gives me a break too so I’m so grateful for it. The biggest challenge is keeping mum active because as soon as she’s in front of the tv she falls asleep. With a house to clean, shopping to do and family to support it can be hard to focus more time on mum. She enjoys doing some ironing, coming to the supermarket and going for a coffee but can’t walk far so trips are kept short. The next few years are uncertain but we will continue to look after mum at home for as long as we can. I still get occasional glimmers of old mum - she can still surprise me with a touching comment or action. She’s always been a great mum to my two brothers and I and we are all going to support her for as long as we can. Louise
I also found her character changes difficult to accept and understand at first - missing the empathy and compassion. Now that we have adjusted we’re focused on making every day as good as it can be for mum. I’m not working at the moment and am looking for work that fits in with looking after mum. Mum has recently started an Age UK dementia club and although she didn’t want me to leave her there for the day at first, she’s now made friends and absolutely loves it. It gives me a break too so I’m so grateful for it. The biggest challenge is keeping mum active because as soon as she’s in front of the tv she falls asleep. With a house to clean, shopping to do and family to support it can be hard to focus more time on mum. She enjoys doing some ironing, coming to the supermarket and going for a coffee but can’t walk far so trips are kept short. The next few years are uncertain but we will continue to look after mum at home for as long as we can. I still get occasional glimmers of old mum - she can still surprise me with a touching comment or action. She’s always been a great mum to my two brothers and I and we are all going to support her for as long as we can. Louise
Louise
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?