Dementia Support Line
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If you're ready to tell your story, we want your voice to be heard.
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?
It will take society to beat dementia. We’ll take your stories to those who need to hear them most, to help make dementia the political priority it deserves to be.
My mother was waiting for an appointment with the memory clinic for 6-8 months, but was struggling to look after herself, refused to go out and was having several...
Hi everyone im Sherie and I have lost 3 of my...
I cared for my mum for 20 years - the last 5 years when she had Dementia. Mum passed away during lockdown and I saw her visible age 5 years in the 5 months due to the...
Hi my name is Michelle and I would like to share with...
My mom Joyce started to behave a little bit...
Mom was finally diagnosed in October 2022, we knew...
I was diagnosed in April 2012 with Early onset Alzheimer's aged 61.
On top of having to retire early at age 58 due chronic back pain / depression for 30...
My husband was diagnosed with Early Onset Dementia at the age of 59, 4 years ago. We are fortunate to be under the wings of an NHS Research Team, who made the...
My husband, aged 64 had been feeling anxious about forgetting how to do parts of his job and spoke with our GP. He was sent for a brain scan and eventually had the...
My partner is 57 and was diagnosed last July the day before my birthday, I literally felt my blood run cold when they told us. No one else in the family has it so...
When My wonderful wife began exhibiting signs of dementia around eight years ago. Her memory issues were often overshadowed by her osteoarthritis. When the consultant...
We waited seven years for an accurate diagnosis. I...
My mother was waiting for an appointment with the memory clinic for 6-8 months, but was struggling to look after herself, refused to go out and was having several falls. On one occasion she was kept in hospital and the doctors advised me that she did not have capacity, they were the ones who made the diagnosis. If not who knows how long we would have waited. This diagnosis did unlock the need for carers to attend 4 times a day which did take some of the strain the family was under. However that was all the help we received, 1 year later she had to have an urgent knee replacement, as her original knee replacement had broken. On leaving hospital it was advised that my Mum could no longer live on her own and as none of the family homes were suitable she went into a residential care home. While initially we thought this would be good for her, sadly she has deteriorated and the home do not seem to make any allowances or offer her specialised help or support, which we think has exacerbated her mental wellbeing. Currently we are at a loss as to what we can do as no one seems to offer any help or support for her or us. We are alone struggling to cope, while my mother is confused and upset every day as she cannot remember what she is doing from day to day. She has lost all her life skills, so can no longer dress or wash herself. Every day she asks what she needs to do and with her mobility cannot get out and about very much. We try to take her out in the community or to our homes, but she finds it overwhelming and spends most of her time asking when she can go back to the care home. So even through she has carers around 24hrs a day she is still isolated as they appear to give up trying to get her to socialise or join in, even for meal times and she is left every day in a small room by herself. We try to visit as often as we can, but it is very difficult when she just asks the same questions over and over again about who we are, where is her family etc. and gets upset with the answers. In her head she is still the independent woman she was and cannot understand why she cannot do thinks she used to. We have no idea if there is anything that would help, but we have no one to ask. She has no quality of life and keeps saying she hopes she doesn't wake up in the morning. This is mental torture for both My Mum and us, my 13 year old son and other members of the family no longer visit her, so it is left to myself and 1 of my brothers and his wife to visit. As I am unable to afford to give up work I can only visit 3 times a week and am torn every day between My Mum and my son/family. My mental health is suffering and every day I struggle to cope, with no end or relief in site. I can only imagine what families that live with their loved ones with Dementia go through and have no idea how they can cope. Nottingham is very poor for dementia patients and with the local council cuts they are not even getting any help planned in for the future.
Heather
Hi everyone im Sherie and I have lost 3 of my grandparents to this incredibly cruel disease and my dad has been diagnosed recently so is in the early stages of dementia.my first nan nanny holmes was the first in the family to have the disease and how we all became more aware of dementia and to be honest up till nan was diagnosed I didn't know much about dementia but because of my Nan our family has done so much research on dementia to see how we can help anyway possible. My nanny holmes was a very happy funny pleasant dementia sufferer who lived 13 years with it before it took her. Then my grandad was diagnosed 2 months later and he died in 3 years of dementia being diagnosed and then when my heartbeat/my nan was diagnosed we got to see how unbelievably cruel and heartbreaking dementia is and how it affects people differently .my special Nan was a totally different person altogether nasty vicious aggressive would bite and scratch .this broke our hearts but the worst thing was she starved to death because she forgot how to swallow and seeing her waist away infront of me.and when she was asking for me say she misses me so much and what had she done for me to forget her and not come see her was probably the worst thing really knowing she died thinking I had forgotten her and abandoned her .this is the reason why I am raising money to help the future generations of dementia and also my dad is in the early stages and seeing him be proud of me for trying to help save him and his memory and generations to come is keeping me going in the right headspace and is stopping me from joining them by doing something selfish.dementia is in my eyes the worse disease it's not something that can be fixed with treatment or reversed all that is available is a tablet that can help slow the disease progression down but has to be diagnosed early on.other diseases can be treated and cured yet they are in the spotlight for donations and are getting the raised awareness constantly and dementia is being pushed to the back of the queue for any awareness and support.why can't it be a world charity that all funds are split between every charity equally so that everyone is benefiting .
Sherie
I cared for my mum for 20 years - the last 5 years when she had Dementia. Mum passed away during lockdown and I saw her visible age 5 years in the 5 months due to the isolation/restrictions in place. Support which had to be fought for at every turn was limited even though I was paying for it. No support for the me. I gave up my career (£40k a year) to help her and qualified for carers allowance only, yet I must have saved them thousands over the years.
Denise
Hi my name is Michelle and I would like to share with you my story about my amazing husband who was very ill with being in and out of hospital due to him having chest infections and urine infection and having mini strokes COVID twice and we never given a proper diagnosis
Michelle Wright
My mom Joyce started to behave a little bit differently in 2007. I recall her buying slippers for a whole family, also giving away my baby dolls and lots of her clothing. This was totally out of character for her. I didn’t think anything was wrong until she admitted not being able to write her Christmas cards and hadn’t bought any presents. Mom always loved buying presents for the family. She lived with my dad and brother. My dad said she had put cat food in the bread bin, and other little mix ups.
I took her to see her GP, about a different health issue and also told her about my concerns. The GP referred her for a brain scan, she was diagnosed with vascular dementia in early 2008.
She was referred to what was our local geriatric hospital to see a psychiatrist.
It was a worrying time as there was no treatment or support available. She was given regular memory tests which were distressing as mom had enough awareness to realise that her memory was deteriorating. We were able to support her to live at home. She was physically fit, and my dad had no cognitive issues, but his physical health was failing.
After mom pushed dad into a cupboard, I realised that my dad needed help. I had requested help from Sandwell Social Services but was told that she wasn’t eligible as she could wash and dress herself. Following my dad being admitted to hospital following a fall, eventually we had a visit from a social work assistant. She completed an assessment. The whole process was lengthy, stressful and confusing for my mom. Eventually mom got a carer 3 times daily and access to daycare twice a week. This enabled my brother to work. I had to work as a single parent.
As the dementia progressed I applied for Direct Payments to manage her budget myself. I employed a carer for mom 2 days each week, also using the contracted carers and daycare. It was complicated and again stressful, but again it meant that mom could remain at home. My dad died a couple of years later. Mom
lived until she was 87, dying in her own bed peacefully, 7 years after her diagnosis.
It is essential to get a correct diagnosis. I know of elderly people who are told they have Alzheimer’s , without a brain scan.
They can then be offered the correct medical support and hopefully practical support for the family. This would help to avoid dementia patients going into care homes unnecessarily.
Families should be given a full understanding of the condition, the changes that will occur and the support available. I found out by fighting for my mom’s needs.
I took her to see her GP, about a different health issue and also told her about my concerns. The GP referred her for a brain scan, she was diagnosed with vascular dementia in early 2008.
She was referred to what was our local geriatric hospital to see a psychiatrist.
It was a worrying time as there was no treatment or support available. She was given regular memory tests which were distressing as mom had enough awareness to realise that her memory was deteriorating. We were able to support her to live at home. She was physically fit, and my dad had no cognitive issues, but his physical health was failing.
After mom pushed dad into a cupboard, I realised that my dad needed help. I had requested help from Sandwell Social Services but was told that she wasn’t eligible as she could wash and dress herself. Following my dad being admitted to hospital following a fall, eventually we had a visit from a social work assistant. She completed an assessment. The whole process was lengthy, stressful and confusing for my mom. Eventually mom got a carer 3 times daily and access to daycare twice a week. This enabled my brother to work. I had to work as a single parent.
As the dementia progressed I applied for Direct Payments to manage her budget myself. I employed a carer for mom 2 days each week, also using the contracted carers and daycare. It was complicated and again stressful, but again it meant that mom could remain at home. My dad died a couple of years later. Mom
lived until she was 87, dying in her own bed peacefully, 7 years after her diagnosis.
It is essential to get a correct diagnosis. I know of elderly people who are told they have Alzheimer’s , without a brain scan.
They can then be offered the correct medical support and hopefully practical support for the family. This would help to avoid dementia patients going into care homes unnecessarily.
Families should be given a full understanding of the condition, the changes that will occur and the support available. I found out by fighting for my mom’s needs.
Susan
Mom was finally diagnosed in October 2022, we knew she had it really for sometime.
After a fall March 2022 the MRI scan showed damage to Moms brain and we then had to wait until October for a Memory clinic appointment they did the questions /cognition ability a week later was diagnosed with Alzheimers & Mixed Vascular dementia. My Nan passed from Alzheimers so we wonder if genetics has played a part and worry for my own cognitive and physical decline if moms passed the cruel genetic disease onto me as first born daughter. I have been care giver to mom ever since we lost dad to terminal glioblastoma brain tumour in the pandemic, once mom lost dad the decline began almost over night, we were glad mom got diagnosed to prove what we feared was true, I then began reading as much as I could from many web sites to help mom on her progression. I have managed to put in moms bungalow lots of mobility items to help keep mom safe , many think its just brain decline, however the physical impact is also so sad as is the cognative decline . #ForACure #Fixthefunding for our loved ones and us family care givers, This disease has been swept under the rug time and time again, attendance allowence & carers allowence needs to be increased to give a better quality of life for our loved ones and family care giver #CHC should be awarded our loved ones with the disease after 2 years of diagnosis should they need it - taking their savings and & home , rightful inheritence that should be given ti the family member written in a legal WILL
so make Dementia /Alzheimers a priority NOW not in a few years times .
After a fall March 2022 the MRI scan showed damage to Moms brain and we then had to wait until October for a Memory clinic appointment they did the questions /cognition ability a week later was diagnosed with Alzheimers & Mixed Vascular dementia. My Nan passed from Alzheimers so we wonder if genetics has played a part and worry for my own cognitive and physical decline if moms passed the cruel genetic disease onto me as first born daughter. I have been care giver to mom ever since we lost dad to terminal glioblastoma brain tumour in the pandemic, once mom lost dad the decline began almost over night, we were glad mom got diagnosed to prove what we feared was true, I then began reading as much as I could from many web sites to help mom on her progression. I have managed to put in moms bungalow lots of mobility items to help keep mom safe , many think its just brain decline, however the physical impact is also so sad as is the cognative decline . #ForACure #Fixthefunding for our loved ones and us family care givers, This disease has been swept under the rug time and time again, attendance allowence & carers allowence needs to be increased to give a better quality of life for our loved ones and family care giver #CHC should be awarded our loved ones with the disease after 2 years of diagnosis should they need it - taking their savings and & home , rightful inheritence that should be given ti the family member written in a legal WILL
so make Dementia /Alzheimers a priority NOW not in a few years times .
Louise
I was diagnosed in April 2012 with Early onset Alzheimer's aged 61.
On top of having to retire early at age 58 due chronic back pain / depression for 30 years.
This additional news, was the last straw. I could not cope with life at this point. If it wasn't for the back up services of CPN and Consultant providing daily contact, I would not be telling my story today.
When I was mentally strong enough, I became involved in helping others in many ways. Volunteer work at Alzheimer's Society and guest speaking.
I now run a self dependent Dementia group promoted by DEEP & Trent Dementia (Nottm).
Friends for Life (Nottm) "Ay'e up mi duck". Now supports 50 people also dealing with Dementia. I was lucky getting early diagnosis and the support I badly needed at this point in my life. There now seems a greatly reduced support system in place.
Let's get the urgent quality support in place, now.!
On top of having to retire early at age 58 due chronic back pain / depression for 30 years.
This additional news, was the last straw. I could not cope with life at this point. If it wasn't for the back up services of CPN and Consultant providing daily contact, I would not be telling my story today.
When I was mentally strong enough, I became involved in helping others in many ways. Volunteer work at Alzheimer's Society and guest speaking.
I now run a self dependent Dementia group promoted by DEEP & Trent Dementia (Nottm).
Friends for Life (Nottm) "Ay'e up mi duck". Now supports 50 people also dealing with Dementia. I was lucky getting early diagnosis and the support I badly needed at this point in my life. There now seems a greatly reduced support system in place.
Let's get the urgent quality support in place, now.!
Steven
My husband was diagnosed with Early Onset Dementia at the age of 59, 4 years ago. We are fortunate to be under the wings of an NHS Research Team, who made the specific diagnosis of Posterior Cortical Atrophy (PCA). The Rare Dementia Support organisation have provided a wealth of information around this condition, which has helped me, as my husband's full time carer, and friends and family, to support his specific needs and as to why he does/can't do certain things, and what is likely to happen in the future. Had we not been under this vital Research Team, I can't begin to imagine how isolated and lonely we would be with very little outside support. To obtain an exact diagnosis with referrals to various support groups is an absolute must for the wellbeing of the sufferer and the carer.
Janine
My husband, aged 64 had been feeling anxious about forgetting how to do parts of his job and spoke with our GP. He was sent for a brain scan and eventually had the memory test at the local Memory clinic. This happened in 2014/15. It was quick and to me shocking. Tom took it well and was happy to know something was not right. At this point he didn't want to start taking any drugs, he didn't totally understand how they could help. He was then sidelined with MCI until I took him back to GP two years later. The memory team then came to our home and persuaded him to accept help from Memantine. We are now 9 years since diagnosis and his downward spiral is just starting.
Pauline
My partner is 57 and was diagnosed last July the day before my birthday, I literally felt my blood run cold when they told us. No one else in the family has it so we’re at a loss as to why he has it. We’d been trying to get a diagnosis for 3 years but they kept saying anxiety and depression. He tried to go back to work 3 times but couldn’t take in new information so the financial implications have been massive. I had to fight for the CT scan that then gave us the devastating diagnosis. We have two boys age 11 and 16. I now care for my partner, two children and work and run a house.
We have a mortgage to pay and bills so I have to keep working. If we had a Council house maybe it would be easier as we’d get help with the mortgage. We are trying to give our boys as normal a life as possible whilst also making sure my partner has the best quality of life, it’s really difficult. We’ve had a bit of help from admiral nurses and Carers Leeds but ultimately we’ve been left to it. Luckily, we have family and friends so I’m grateful for that. My partner is ok at the moment just confused forgetful and loses things constantly. He’s also forgotten how to fix the car, do any DIY (which is really stressful as he keeps trying!) he was so clever and fitted our kitchen and bathroom and worked as engineer for 15 years but all that has gone now. He also had a episode of delerium in January after breaking his leg which was terrifying for him and me. Thankfully, it only lasted 4 days and he’s stable at the moment. It’s the most devastating illness and I wouldn’t wish it on anyone. I don’t know what the future holds for us now so just live each day as it comes.
We have a mortgage to pay and bills so I have to keep working. If we had a Council house maybe it would be easier as we’d get help with the mortgage. We are trying to give our boys as normal a life as possible whilst also making sure my partner has the best quality of life, it’s really difficult. We’ve had a bit of help from admiral nurses and Carers Leeds but ultimately we’ve been left to it. Luckily, we have family and friends so I’m grateful for that. My partner is ok at the moment just confused forgetful and loses things constantly. He’s also forgotten how to fix the car, do any DIY (which is really stressful as he keeps trying!) he was so clever and fitted our kitchen and bathroom and worked as engineer for 15 years but all that has gone now. He also had a episode of delerium in January after breaking his leg which was terrifying for him and me. Thankfully, it only lasted 4 days and he’s stable at the moment. It’s the most devastating illness and I wouldn’t wish it on anyone. I don’t know what the future holds for us now so just live each day as it comes.
Kate
When My wonderful wife began exhibiting signs of dementia around eight years ago. Her memory issues were often overshadowed by her osteoarthritis. When the consultant neurologist recommended that she be referred to the Bristol Brain Center, nothing happened until a year later. Only then because she had fallen and brocken her leg. The doctor caring for her noticed her confusion and chased up the referal. When she was discharged from hospital we finaly got the appointment and diognosis of Alzhiemers desiese. We did then get a full attendance allowance but not a council tax reduction because our son was living with us. The only home help that we had was when the district nurses came to treat her pressure sore.
Peter
We waited seven years for an accurate diagnosis. I wrote a book about our journey over 22 years. It's called "A Bucketful of Patience" and published by Bristol Books CIC.
Tony
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?