Share your diagnosis story

My husband Tom showed personality changes & trouble with memory as far back as 2016, but diagnosed with Alzheimers in 2019, after I spoke to our GP, who referred him to our local specialist hospital after an initial memory test. I'm so grateful that we had that facility in Liverpool, as the care coordinators have been so helpful as his condition worsened , also showing concern for me. Diagnosis led to so much information available to me - he remained in denial of any serious issues& understood little as time passed. Sadly Tom died at home 7 months ago, but that diagnosis was invaluable and afforded me so much support in dealing with this cruel condition. I wish the help we had was nationwide, sadly it is not...

My mother Betty was a fabulous cook. She was constantly in the kitchen creating wonderful meals. Her main hobby was making & decorating cakes - birthday cakes for the grandchildren or wedding cakes. My father started to notice out of character behaviour & I too was getting concerned. One day Mum was preparing a meal - sweet & sour pork. She was following a recipe which was next to a curry sauce recipe on the page. The end result was a mixture of all of the ingredients! Mum suffered for 14 years & was a shadow of her former self. Dad suffered alongside her - he cared for her at home as he promised her she would never go into a home.
Dad was my hero. "For better and for worse" was definitely his motto.

My grandma had dementia, it was awful to witness her deterioration, but worse came, two of my aunts became ill with dementia. It was awful to watch their deterioration over a period of months and years. My grandmas diagnosis was in the late 1970's I believe, she was always full of fun and happiness. She was a wonderful grandma, adored by all the family. Sad to say two of my aunts, grandma's daughters ended their days with dementia

My Mum started having difficulties with her memory in 2018, she had a CT scan and was told by the doctor that there was ‘no sign of dementia’ we now know that not all conditions show on a CT scan. Mum was supported more than we knew by Dad but when Dad passed away suddenly from COVID 19 in April 2020 the level of Dad’s support became apparent, We pushed for Mum to have a memory test, this proved more difficult due to lockdown, Mum told the Practice Nurse twice that she didn’t need one, we pushed the request and a memory test was completed which in turn led to a full assessment and Mum was formally diagnosed with Alzheimer’s in November 2020. The diagnosis opened up support links for Mum and for us to support Mum and whilst I did eventually give up my job to care for Mum due to the care she required and the difficulties during the pandemic, we received support from our local Dementia Team and GP Team. Having the diagnosis helped to get priority access to her GP and opened up support within the Hospital Dementia Team during a hospital admission which potentially wouldn’t have been there without the diagnosis.
Early diagnosis is so important and for Mum in 2018 it could have been 2 years earlier and support could have been in place earlier.
Mum passed away in 2022, Alzheimer’s was not the Primary Cause, it was a cruel and sad journey for Mum and we miss her greatly.

The wait and see policy, as it seems it is, for the diagnosis of Dementia is cruel. Both my parents had to wait unnecessarily losing valuable time that they could have been taking the improving treatments. This would have been so beneficial

My story is about my lovely Mum. I am going back to approximately 2000 - My mum had been diagnosed with Vascular Dementia and I was almost 58 and working part time as an office administrator. I was suddenly diagnosed with breast cancer and about to go into hospital for my operation when my Mum fell and broke her arm and leg. A very difficult 2 months followed visiting her in hospital after my op and then when chemo started still visiting when my blood levels were reasonable. A break of 1 month and then Radiotherapy for 3 weeks every day.

My Mums Vascular Dementia had been diagnosed and she lived with m brother who worked full time. Eventually she came out of hospital and I was able to get a carer through the local council to come once a day to help her. I came over every day I was not working to clean the house and make dinners for her and my brother.
As she deterioarated the care increasted eventually to 2 carers 4 times a day, which was a godsend for my brother and I. I still came on all the days I wasn't working and made dinner etc. She had Attendance allowance which helped very much. Care was much better in those times - I understand people have to pay for their own care now!! Such a deterioration in care support!!!
Eventually my poor mum was doubly incontinent and had to go into a Residential Home and then as she worsened into Nursing Care which was excellent, and where she eventually passed away.
Then she lost her Attendance allowance and surrendered her pension book but was allowed to keep a small amount which made it possible for her to have her hair washed and set by the resident hairdresser.

I visied her every day I was not working ie Wednesday Lunch (as I only worked a half day on Wednesdays) Thursday Friday and Saturday - always at Lunch time so I could feed her and help the staff as there were several patients needing help with their food. The Sister in charge was very good and had a rota on the wall in the kitchen of all those who required help with feeding - they had to tick the list when that patient had had drink, starter, main meal, and puddings.

We never wanted her to go into hospital but I was 60 and my brother 61 and we were both working so it just got too much for us and the her carers.

My late friend and I belonged to Musical societies and both sang in several old peoples homes for many years and I always noticed how the residents could remember the songs even though they had difficulty speaking or understanding

My husband was a member of Mensa so was able to mask his symptoms for years. The family noticed signs around 2014 but he wasn’t formally diagnosed until 2021. The diagnosis helped financially (25% reduction in council tax & attendance allowance). It also provided a pathway to support for me (Admiral nurse & Memory Café) which is invaluable as I don’t have relatives nearby to share the load. He doesn’t yet need help with personal care & can manage without me for short periods with copious written instructions - but I feel judged when I get away.

My husband died two months ago from Alzheimer’s it has been very hard especially the last two years. I feel everyone’s story and experience is different and to tell my story may frighten some people at the start of this journey as theirs maybe easier. Early diagnosis is crucial as one can then access different services. The waiting for help is so difficult as all services are stretch to beyond their capacity and sadly at times one needs instant attention. Even when sectioned there was no places or beds for my husband to go, he finally had pneumonia and was hospitalised. Hospitals are not the right place for dementia patients we need more specialised facilities with dementia trained staff which will help patients and their families

My husband was diagnosed in 2013 age 70, we did get an early diagnosis and were lucky to have medication that helped to slow thing's down for four years, then came a quiet fast decline, I am his sole carer, he now has no real memory of much, he is incontinent and can just hobble around the home.
Social services were involved last year as he was hospitalised due to septic arthritis, but now we are basically on our own.
I am 82 in June and finding it is getting harder caring for him, it's long hours as he can wake up anytime and his day then starts, there is no care for the carers, if you can afford day care that's ok but £90 + for a few hours is very hard to find, so we just plod on doing our best for our loved ones.

Thank you for the opportunity to write this.
Deborah.