Share your diagnosis story

I took my Mum to her Doctor after noticing changes with her for a year, the Doctor said I don’t think it’s anything other than lack of oxygen to the brain!

Two years later I took Mum back and she was referred by the same Doctor for diagnosis which came back as vascular dementia.

I didn’t know much about it I had lots to learn to support Mum, I wanted her to have medication to help her manage best she could I believed this was the way.

Mum did get medication, the disease progressed I learnt so much on the move - that it was progressive I couldn’t stop it or make it better and the medication I believe helped Mum manage in a better way in turn helping me/us to support her.

I learnt so much it was like trying to hold back a cart from going faster down a hill it didn’t stop and we managed to support Mum throughout.

I believe although many things changed losing who she had always been Mum always remembered who I was amongst lots of confusion.

I believe it would have been a disaster for Mum and us supporting her had she not had the medication that helped her manage I believe her emotions and how she felt and acted or reacted which is HUGE.

I think it would be far less costly in many ways imaginable to diagnose people and offer medication in an organised supportive structured way more humane.

The photo is of my attempt to get Mum into a CAT scan

When I persuaded my mum to go to the GPs they did arrange a memory test and a MRI diagnosing Alzheimer’s mixed with vascular dementia. Although the diagnosis was a relief that what I suspected was true I didn’t know whether I had done the right thing but then realised I could warn people my mum was in contact with should they suspect anything odd. Like those at church and other relatives. For 18 months she was functional with support adapting to getting taxis instead of driving. Fortunately she took our advice to stop driving. The GP had prescribed a drug straight away and I didn’t u derstand what he meant by this would help but then she would fall off a cliff, I realised 18minths after diagnosis when she had a fall and broke her neck of femur, I realised later was a blackout. After this point though focussing on the leg she had actually changed dramatically and was distressed and could now only remember a couple of minutes.
We had to get her into a dementia care home for her safety and well being.
I have found medics, nurses, most people in fact in roles public facing do not understand dementia or Alzheimer’s, a medical consultant really reacting like it was deafness. I feel a lot of services get there staff to carry out an online course. They do not understand the different connotations of the disease presenting in different people.
My mother can’t remember the past, can’t follow conversation unless one to one, can’t follow TV, when in pain you have to ask in a certain way to get the truth.
I am now used to it, but when I looked online there was little to support the immediate carer/family on how to cope with the Ambiguous Grief you feel enormously as your person continues through the decline.

I worked in care so I had done a Dementia level 2 certificate. This came in useful when my dad was displaying signs of dementia. We had taken him to London for his 80th birthday and as we were going around the science museum he was going to spit on to the floor, not something he would do. He was confused with money, he confused my nephews feeding bottle for the vinegar bottle. He couldn't find his way to the toilets and back. He went to dry his hands at the condom machine instead of the hand dryer. My husband of 28 years was with him but he didn't recognise him. He asked my husband " How do I get out of here mate?"
It was obvious to me that he was showing signs of dementia. I spoke to my dad and he agreed to go to the drs. We went and after numerous tests he was diagnosed , after 6 months, as having Vasculour dementia. We didn't get much support from the memory team. It was down to my mum, my brother and myself to look after him. Diagnosis took too long and as dad progressed his love for playing his harmonica became less and less. He had played, self taught from the age of 7 years old. This all took it's toll on mum. She would take time out by going to bingo leaving dad home alone, as my brother and I were both working full time. My dad then suddenly deteriorated and his love for music and gardening, or simply tinkering around the house disappeared. He would just sit and close his eyes. He didn't recognise my mum. He thought my brother was my husband. He began dressing in his pyjamas over his clothes and passing urine in the waste bin. He was taken for respite into a care home, where he wouldn't eat or drink. He came home but was still the same. Carers were brought in. My mum couldn't cope as he wasn't sleeping at night, he was wandering around in the dark. He was taken, he didn't want to go, back to the care home. He was only in there a couple of days when he was found unresponsive. He was rushed to hospital straight to resus. He was given 12 to 24 hours to live. He fought death all the way. He actually lived another 10 days before, after me giving him permission to go, which sounds strange I know but I was always close to my dad , he passed away on the 6th April 2014. I miss my dad everyday and feel that more should be done to diagnose dementia. In a way we were lucky that I spotted the signs early due to my knowledge. Dad actually passed away after only 4 years due to a medical problem. I often say to mum that I am glad that he passed when he did as I couldn't have placed him in a dementia care home, having worked in a dementia unit myself. There simply isn't enough help or support out there for dementia sufferers.
My dad used to record himself playing his music, he had 2 karaoke machines. One to play backing tracks and the other to record. On his funeral day we had dad playing his favourite song My Way, as he entered the crematorium. I hope my story tells enough to help get more help. Sharon

My husband is now 68 and when he was 60 I was noticing changes in his remembering certain things. He is a very intelligent man acquiring a 1st in economics and statistics and had a very challenging job. I now at the age of 65 had to close my business as during lockdown and being at home with him, he was doing dangerous things regarding cooking and electrics. His dementia had deteriorated significantly and he now would not shower, change his clothes be able to cook for himself. He was a great reader but cannot do that anymore. Being his full time carer impacts greatly on my well being both physically and mentally. Respite is what I need more than anything but professional respite is very expensive. I have joined dementia groups, spoke to professionals and also Admiral Nurses and although they inform you of certain things the majority of the information I am given is common sense and I am already doing it. I feel that my elderly years of being able to do what and when I like have been taken away and I must admit it does make me very sad and at times resentful. We have 4 grown up children and 6 grandchildren and unfortunately he is starting to forget them which is heartbreaking. The government need to sit up and take more notice of this horrible disease and the situation and stress the cares go through on a daily basis. More help and intervention is definitely needed as without we carers it would cost the state billions but they seem to think they are doing it let them get on with it. A very sad society who the majority it seems don’t care.

I have a family history on dementia. On my mums side of the family.My grandmother, mother,and now my 59 year old sister and she has been in care for last 7years and is all nursing care with no speech.it is heart breaking. My brother in law visits weekly and chats away. To her.

My dad was diagnosed with unspecified dementia in October 2017. Following diagnosis and initial support and advice to put in place Power Of Attorney and claiming attendance allowance, you are pretty much left to work out how to live and cope on your own. We've developed strategies to support dad as best we can on a daily basis, but as you learn with this disease, some days some strategies work and some days the same strategies don't! Dad certainly keeps us on our toes. Its all the things people don't tell you that get you. No two days are the same. Knowing there's no cure and no magic pill to make my dad better and coming to terms with losing bits of him daily and getting a new version of him with every inch dementia grips is a real emotional rollacoaster. I love my dad forever and always. Support for families is pivotal in terms of ensuring families have the emotional strength to continue to care for their loved ones at home for as long as its possible. Befriending and carer support for people with dementia who may well be isolated in society is key for their continued socialising skills and mental ability.

My auntie has FTD, it happened overnight. She went to bed normal Ann and the following moning she didnt know me.
We have always lived together as my mum passed when I was 17.
She was sectioned that afternoon, this was all just as covid kicked off so I was unable to see her which was very distressing for both of us.
This was April 2020 and she was diagnosed in the October 2024 with FTD.
This came as a huge shock as her sister had Alzeimers so I was aware of signs to look out for but nothing with my Auntie Ann it literally felt like she lost herself overnight.

I have been massively affected by her diagnosis and the changes that have taken place.

I feel people with this illness arent looked after by the government at all as the cost of care homes is beyond a joke.

I hope in the future this changes and a cure is found for this awful disease#ANN'SARMY