Share your diagnosis story

During Covid my dad got his diagnosis, I couldn’t meet his needs on my own due to having a stroke, carers were coming in x2 3 times a day, they only worked with him for just over a month, in all that time they never managed to help dad with washing putting clean clothes on saying he refused, also leaving food out in the kitchen off course he would forget the food was there, or leave drinks for him, last straw my dad fell and they picked him up and put him back into bed, a few hours later they told my when I went up I called 999, I wasn’t aloud to see my dad for 6 months due to Covid whilst in hospital, I never got to explain to him why I couldn’t visit , the final days I saw him he didn’t know who I was .

My mother was diagnosed early in 2017 with Alzheimers. Unfortunately, even though she was suitable for medication to assist a little, this was not mentioned at the memory clinic at the time, or her doctors. Things got worse in 2019 and it was only then a social worker mentioned medications to me. She was soon prescribed which, i feel, have helped. Early diagnosis is so important.

I’ve still not got a diagnosis for my lovely Mum. She lived about 200 miles away from me and so a lot of travelling backwards and forwards and calls. Her GP surgery was useless kept saying it was just old age but very difficult to push from so far. She is now in a Care Home as living independently became impossible I and her neighbours/friends were getting 20-60 phone calls a day, she couldn’t manage money (forgot her PIN number and the process to get a new one was impossible for her to cope with) wasn’t eating so became terribly thin etc etc. Social Services took 3 months to respond to my pleas for help by which time I’d given up and moved her. She has now been in the home a month has a new GP who has organised the memory clinic and an unofficial diagnosis of dementia. Her memory is still disappearing rapidly and I’m just so angry that she was so abandoned by the healthcare system for so long. How frightened she must have been breaks my heart. She is happy and less anxious now but I feel like I’ve had to pay private (care home fees are extortionate) to achieve that. GPs should be paying more attention and involving families in these diagnoses if you speak to them on a good day they’ll pass all the tests in the practice but then leave and not know how to boil the kettle it’s being missed too many times.

My Father was diagnosed with Dementia in 2017. We managed to keep him at home at 1st caring for him myself, before bringing in carers and then when Covid hit we had no choice but to put him in a home. It was heartbreaking but we could no longer ensure his safety. He paid for care himself until eventually getting funded after he’d been in the home a while. You do feel like you’re ‘on your own’ We had no problems getting him diagnosed, once we realised there was an issue.

I am sure that my story is nothing unusual. My mother came from a very poor background but was bright enough to win a scholarship to a grammar school and became a college lecturer. Fortunately, she had no obvious dementia before my father died but after the age of 90, she lost mental capacity. This loss started slowly at first and then increased rapidly, like on a roller coaster. She became very confused and became bowel incontinent, leaving shit everywhere. Despite having carers come in 3 or 4 times per day, for most of the day, her home became completely insanitary. Although I had a son living fairly locally, I lived a few hours drive away.
She very vociferously opposed going into a care home. She would tell us that she was very bright, had won a scholarship and would show us her various academic certificates. However, we realised that we could not leave her in her own home as it was so insanitary, so I did a lot of research into care homes awaiting the right opportunity. After 2 falls within her home in the one day, she was admitted to hospital for observation and was then transferred by the hospital into a joint local authority / health authority temporary respite care home.
We took the heart-breaking decision that even though it was very much against my mother's wishes, we had to take that opportunity to get her into a care home, rather than letting her back into her own home, as it was no longer safe for her to live there. I found a place in a nursing home, a former vicarage and in sight of the local parish church. It was not far from her own home, so even though she had never been into it, it was not unfamiliar to her. My elder son took her there on the pretext that it was just another intermediate stop before going back to her own home. He reluctantly had to do this deception, as otherwise she would have fought against it.
Whilst she was there, she had to go to hospital for an appointment. As my son was unavailable on that day, I had to drive up from South East London to Derby to take her to the appointment. On our return from the hospital, she refused to get out of the car, demanding to be taken back to her own home and I had enormous difficulty getting her out of the car and back into the nursing home. I had to win but got no joy from doing so.
We only placed her in that nursing home, as our preferred care home had no vacancies. When a place did become available, she went there. Even then, our problems did not end. Although she had no serious medical conditions, other than Alzheimer's, her physical condition continued to deteriorate, so she was no longer able to walk or get into or out of bed unaided. The then manager at the home demanded that we transfer her to a nursing home, unfoundedly claiming that she needed medical care, although the real reason appeared to be that she needed a hoist to get into and out of bed (which was subsequently provided) and a lot of staff time. We appealed against that decision and when that manager left, the demand that we transfer her was dropped.
In her later years, even though I was her only child, she no longer knew who I was, who my sons were or even remembered her late husband (my father). The only thing that she consistently remembered was her own name (and would repeatedly tell people). She died of Alzheimer's aged 97.
As bad as it was, she was fortunate in having reasonable mental capacity until she was 90. Some people get Alzheimer's at much younger ages, including Ted, a neighbour of mine, who was diagnosed with Alzheimer's when in his 50's. He had been very bright and had a managerial position but by his later 60's he was in care. His family held a 70th birthday party for him in the care home. As I was in the same profession and knew some of his former colleagues, I asked them to send him a card. As a result, the colleague that organised the card was invited to the party. He advised me that although everyone else at the party was having a good time, Ted was completely oblivious to it all.
Although my mother was the only one of the 4 parents of my wife and myself to be diagnosed with Alzheimer's, all of our parents suffered from health and mobility problems in later life and 3 of them ended their days in nursing or care homes. As we are both only children, we have experienced the problems and difficulties that this can cause.

My husband was finally diagnosed in 2020 after a suicide attempt ,we had suspected dementia for 2 years but were told by gp it was not ! I care for him on my own ,very minimal support has been offered. Last year I was diagnosed with stage 4 cancer , I find the treatment leaves me feeling exhausted ,but unless we pay more than I think we can afford there is no support or help.we have a reduction in council tax and attendance allowance. It can be a very lonely existence, sometimes I go for days without talking to anyone .My husband falls frequently and has poor mobility we use a wheelchair for him but some days I struggle to push it .There needs to be more support for carers ,many people devote years to caring for a family member at a cost to themselves which can have a knock on effect on their health both physical and mental. This will eventually require NHS input.

My husband was diagnosed with Alzheimer's in 2018. I had taken him to the doctor after several years in which his memory and ability to perform 'normal' tasks e.g. handling money, telling the time,remembering his appointments , organising things to make a meal.etc. had deteriorated.
Doctor did the clock test, my husband looked at it and burst into tears.
We then were sent for a brain scan within weeks, in Newcastle. Got a diagnosis of Alzheimer's and referral to a specialist unit at the Freeman Hospital. There followed medication, review every 4 months. Then the pandemic, we heard nothing for 2 yrs ,and when my daughter rang they had moved buildings and had no record of him at all. This was rectified but 2yrs of having new tablets had been wasted.
Since then we have had lots of agencies involved but none offer any practical help for us in our home. I am now struggling to cope at home and the only help available is expensive. But that's another fight.

I'm still waiting to be able to have an a appointment with a Doctor, I have a form filled in, from Dementia , but alas still waiting. My aunt(on my fathers side) had Dementia, my father my sister and my brother he died last November. I have a job to end my sentences forgetful, so I just want to know early rather than later, I live on my own family all gone now.

My mum had vascular dementia. It was heart breaking to see her, as see progressed with the dementia. Since mum died in 2020. Both her younger sister and brother passed away in 2023. Both had Dementia. This has been devastating for all my family.

My husband was diagnosed with dementia a couple of years ago...he also became bedbound with urinary snd arthritis issues..life would be much harder if he were active..grateful for carers snd neighbours