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I first noticed mum’s behaviour was changing when she was sixty years old. I contacted my mum’s GP surgery several times, but they wouldn’t listen to my concerns. I took her to see her GP in person. The GP asked her if anything was the matter, my mum said no, we were dismissed regardless of my concerns. After four years of begging the GP to listen, my mum was diagnosed with early onset Alzheimer’s at age 64. That four-year wait had a huge impact on me and my family. My mum lived on her own and had no help, and no access to appropriate medication. I had to give up my job and care for her. This had a huge financial impact. I was paying my own bills and my mum’s bills. An earlier diagnosis would have given mum access to drugs that might have slowed down the heart-breaking symptoms of Alzheimer’s. An earlier diagnosis could have helped me keep my job. An earlier diagnosis could have saved us all from watching mum helplessly decline with no outside help from anybody. I would like to see positive changes made that mean no other family has to go through what we went through.

My mum was diagnosed with dementia 6 years ago and passed away in February this year. We knew something was wrong with mum and tried to get her to talk to her GP but she refused. Eventually she was admitted into hospital with a suspected UTI. She was having hallucinations and was very confused. She was in hospital for a number of weeks and we expressed our concern about her confusion. When she was physically well to go home, they were going to discharge her with carers calling in. We spoke to her social worker and explained our worries about her being alone for a lot of the time as she was prone to leaving the house and wandering. She was assessed by a consultant and eventually diagnosed with Alzheimers disease. I think earlier diagnosis would have helped my mum and us to prepare caring arrangements and support.

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.

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.

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.!