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My lovely mum Susannah , was diagnosed with Vascular Dementia/Alzheimer's in 2015 through a CT scan . But her journey had started much earlier , probably 4/5 years, , you kind of pass of things for a while the repetition, what day is it , forgetting to do the stuff she’s done for years kept thinking she’s ok see how she goes . Got the mental health team out sorted her scan got diagnoses then was it, unless I got in touch to say I was worried there been a change in her then got an appointment for what really!! Having to see my mum do these memory tests that wasn’t needed so much stress for someone with Dementia. Probably had 3 appointments in the time leading up to losing my mum . I cared for her at home with my sister difficult times towards the last year of her life . Wandering wanting to go home, falls , I got private carers in mum didn’t get much help towards that . Put her to bed that became pointless as she would get up once they had gone. I had cameras fitted so in the end I took over . Glad I did looking back even though it was difficult having to keep popping back to put her back in bed. I had door senses everything to keep her safe . And I’m thankful I was able to care for her at home. She was admitted to hospital in COVID times with Delirium due to water infection , this was mums journey coming to an end . Thank god I had power of attorney, I got her home even though she had caught COVID was catheterised and bedridden she was home . I knew she was end of life not a Dr telling me this , me having to do this over FaceTime because of covid restrictions, I got continual health care , I demanded she had that . They where amazing looked after mum in her final week. Me and my sister moved in and spent that time with her , it was heartbreaking 💔 but I proud of what I fought for and did and I know she would of been too . Her journey ended 14th November 2020 11.10 am surrounded by family X

My wife Pat and I have been married for nearly 67years and were both born on 15/01
My wife has type 2 diabetes and very advanced vascular dementia. I was nursing Pat at home until a year ago, but she was admitted into hospital and then to a Care Home. I visit Pat every day for 4 hours, but she does not really recognise me without a lot of prompting.
We lost a daughter 37 years ago and to be losing my wife as well is heart breaking! We had 4 children and have 6 Grandchildren, 29 Great and are expecting our 4th and 5th Great Great's!

In 2015 my husband was diagnosed with chronic lymphocytic leukemia and prone to many infections. With infections confusion occurs so initially I and the medical professionals thought his confusion and poor memory was probably the result of his illness and medication. In 2021 following a course of chemotherapy he was diagnosed with Alzheimer's. For me it was like a bereavement, I had handled the CLL well but this was different. I am a retired physiotherapist and university lecturer specialized in elderly people and dementia, I knew what was to come. I felt I had the skills to cope but it's so very different when its your husband and not an objective patient, when it is 24hours a day, and when you live on a remote rural island. As time went by I could see a deterioration mentally and physically and knew from experience I would need a wet room for bathing and wheelchair/hoist access. I was told we access need as he is now not for the future. I am at that need now and no wet room and inadequate shower for a husband who is now doubly incontinent. I feel frustrated and at breaking point trying to work round a seemingly inflexible system. In February this year he slipped on the ice, our GP was very good, to access the hospital its a 2.30 hour journey across 2islands and the mainland. We were sent for x-ray, fractured spine, sent home, then difficulty passing urine, pink and blood in stools, bruising excessive, back to hospital. GP asked for admission for observation and CT scan, I took his suitcase. The doctor in A/E kept us waiting then after an examination sent us home. He said there was no evidence to keep him in he didn't seem to be in pain despite me telling him he was generally confused and was now highly medicated for pain, he discharged us after the last ferry home and because they considered at one point internal injuries my husband had nothing to eat or drink. I felt then and now that the doctor saw an elderly confused man with multiple pathology with a suitcase and thought if we admit him they would not discharge him. Although he would probably argue that he was medically ok he took no notice of the GP request. My husband went home where he had severe swelling of the legs, back to hospital to find a clot in his groin, contacted the haematology consultant and had to go to Aberdeen a overnight ferry journey, to stop his chemotherapy and start alternative treatment. Since this episode he has rapidly deteriorated and is now awaiting a number of tests which I feel would have been sorted if he had not got the Alzheimer's diagnosis . I feel strongly that A/E staff need more training to deal with multiple pathology especially where dementia is involved. More care and attention needs to be given to the carer, I felt I wasn't being listened to, and also to the GP who knows the patient more than someone in casualty. It felt that because of the complex issues that was being presented that it was easier to discharge him rather than sort things out. Since then I am having to look to finding more suitable accommodation, the bungalow we currently live in is unsuitable and the NHS and social services are unable or unwilling to make the necessary changes required. As you are aware routine and familiarity is crucial to dementia patients, my husband sometimes wanders, sometimes toilets in inappropriate places because they are unfamiliar surroundings . Society needs to be more dementia aware, better education of health care professionals and social services but also of the general population, my husband was a very fit active man, a former firefighter, hotel manager and fitness instructor he is not the empty vessel that he now appears. I am his second wife of 22 years this itself is difficult and complex as he remembers things of his former life and sometimes calls me his previous wife name, this affects my mental health and my wellbeing but no one realises the hurt and complexity of being a carer, but also a carer of someone who at times is living with another wife, it hurts.

I have young onset dementia sometimes when I wake up i don't know were I am .worst still when the kids tell me stuff I don't remember it is frustrating to me and them as I argue and say that they didn't tell me .when walking I forget to look when crossing the road.i find the best to stick to a routine. Sometimes I just start crying for no reason. Also lose timber. Lavinia