Share your diagnosis story

My husband was diagnosed with frontal lobe dementia at the age of 61., he is now 67. I was aware of Alzhiemas & heard of Vascular Dementia but not this type

It came as a shock to the family but, by the time my husband had got his diagnosis, he was not in a position to comprehend it. This is a regret I live with as we have never been able to discuss the illness

It took me months going back & forth to the Drs with my husband until we managed to see a Dr that had Dementia training, then the ball started rolling, still took another few months to see Specialists, have scans then diagnoses.

During the time of waiting, as a family, we suffered as we had no idea what was wrong with my husband. We felt in limbo, as no one tries to help you untill these a diagnoses, then we became overwhelmed with what help we could get.

I feel early diagnosed is the key along with more knowledge & more trained GP's to spot the signs & quicker referral rimes

Families should not have to suffer a long wait to get a diagnosed

My beautiful mum June, beautiful inside and out. The closest mother daughter relationship where I notice very early on that it was much more than just getting old and forgetful which seemed to be all I kept hearing from others including professionals.
The biggest challenge I faced was the battle with adult services to make my mum safe and as secure and content as she could be. Living independently with Dementia meant fear, confusion, being often lost inside her flat and outside her flat. Losing the ability to do daily tasks and just staring into nothing and wandering around.
Being offered a care home away from me where mum would have likely deteriorated further without me by her side. Whilst mum was forgetting everything and everyone, I know till the day she passed that she still knew me. I eventually won the battle to get mum near to me where she had several months of contentment and security and having the mother daughter closeness still. Whilst it seemed our roles had reversed I know I was still her little girl.
Mum is finally at peace now and I'm relieved that she is no longer suffering and frightened and confused on a daily basis.
Diagnosis early is so crucial to get all the right help.and support for our loved ones living with Dementia.
Xxx

Both my parents had dementia but my mum declined more rapidly. The diagnosis appointment was stressful as they nearly cancelled us at the last minute. We felt a number that was next on the list. Mum was offered medication but soon after starting her eating and wellbeing became an issue and she was very depressed. We took her off the medication as we didn't know if this was part of the problem. It was only over a period of 5 years that mum forgot how to cook, drive, keep herself safe, look after herself and my dad and evtuallly lost the ability to talk and walk which was devastating as she had always been a very active person. I asked for help from Admiral nurses but that wasn't possible in her area and the Societys just kept telling me to read more online, all I wanted to do was talk to someone who could help me cope with this dramatic change. We employed a carer who helped us through covid and later managed to ensure mum attended activity centres twice a week. When my dad died I moved my mum near me to a care home with dementia support. She spent two years there being cared for and I was able to spend time with her, take her for pub lunches and join in the home activities. The dementia deteriorated to the point that mum stopped sitting up and eventually eating, she died last year in the care home. I still feel bewildered about how difficult I found it to talk to any one face to face or on the phone that really understood dementia and the impact of how quickly my mum deteriorated. Even hospital staff were too busy to take the time to talk, I would really have appreciated dementia support when mum was admitted to hospital, we were just left and plainly told she was on end of life care. Children of parents with dementia need to know that someone can explain how dementia affects the wider family and coping strategies.

My mum was diagnosed 4 years ago and it’s the hardest thing ever that I have had to deal with. We are best friends and now I feel I’ve lost not only my mum but my best friend.