Share your story

Mum died for the last time in February this year after a cruel and relentless battle with this illness that takes your loved one away from you bit by bit and in a cruel relentless way.She was a very active joyous person who became a frail defenceless shell by this disease not remembering what she had done or why she cried so often.This disease devastates peoples bodies and the brilliant minds they once had.Mum was the heart of our family who has left a huge hole that will never be the same again.

My husband was funny,kind,caring,helpful and very practical.Gradually over the last four years he has turned into someone I barely recognise…lacking in motivation,needing encouragement to wash,shower,change clothing and rarely speaking.
He has been assessed as requiring residential care and I have to decide.My health isn’t brilliant at 77and very little support is available.Should he stay at home until I drop or should I. let him go where he will be better cared for and I will be left at home with a reduction of 2/3rds of our joint income.What would YOU do?

I watched my Mother slowly go from a very caring person to someone who landed up in a care home and in the end did not even recognise me when I went to visit her which broke my heart dementia is a very cruel thing for anybody to suffer from and the government should do far more or people that suffer from it .

After noticing changes in my husband some 6 years ago I mentioned it to dr.
4 years ago diagnosed by Navigo with it after brain scan. Twice since then he has had assessments carried out none since.
Pilgrim nurse was brilliant in looking after my well-being now ceased.
Went through incontinence issues which were very difficult purchased all items needed myself.
The main sad thing for me is the conversation repeating over and over the same thing and lack of conversation so feel very isolated. Having been married for 65 years it’s sad to see my husband deteriorate. Cannot understand why no follow ups happen. Tony also has pacemaker, diabetes,COPD, B-12 deficiency luckily we have wonderful District Nurses to administer injections and INR tests
Very difficult to get him to keep clean bath removed and wet room fitted so made my job showering him so much easier. Although I am 84 luckily I still keep active and able to drive.

My mother had cardiovascular dementia. My father was her carer. I helped and relieved him on top of a full time social work job. Mother ended up in psychiatric hospital with other dementia patients. At home she lost all knowledge of who people were including her husband , but she knew me. She became violent and unresponsive. We had to get the ambulance several times to get her off the floor. She got out once and when my father tried to get her in she fought him. The neighbours called the police thinking father was attacking her. It took 5 years to get her memory back to the capable loving person she was.

Mine is a fairly new story as my husband's dementia has only recently been diagnosed but unfortunately his decline has been very rapid.
I want to share some of the things that have badly affected us. I have gone ftom spouse to carer/spouse almost overnight.
My husband has had to give up driving, which he understandably railed against. He is 73.
One of the most bizarre things to have happened on this journey is how quickly my husband has lost daily skills. It is important for him to remain as independent as possible.
He likes to set the table for breakfast before going ro bed. Last night as I was switching off all tge lights he had left on, I discovered that instead of cereal and a bowl in his place, he had put bleach and polish!!! No idea why. Didn't question it, just changed quickly.
I am equally fascinated and horrified by what in his brain led him to do that.
It is a tough journey. Some days so challenging but as the marriage vows state, 'in sickness and in health', and so be it.

I have cared for my husband for over 7 years ,It gets so overwhelming and lonely at times. We just celebrated 65th anniverserry, it was just like any other day. I am so sad much of the time...We need more help for everyday tasks.

I am a full time carer for my HWD for over 12 years..Its full on 24/7 he has nightime incontinence so its wet bed daily..He doesn't like being washed so I struggle with his Hygiene..His moods swing from easy to nasty ! Because of his irregular sleeping patterns home carer coming in morning and night to assist him didn't work for us.This illness is soul destroying it is isolating for the carer and it is so very easy to slip into depression..I wish the Government would recognise the real impact this horrible illness has on us as a family and put it on their priority list for further debate regarding new drugs/respite for carers/also better access for full time care when can no longer cope before the carer becomes ill themselves....

I am daughter and LPA for my mother who has advanced dementia and has self funded her care for the last 6 years. No one seems to understand an LPA and I’m constantly fighting for her best interests. Communication between everyone involved is poor, sometimes non existant. Her Care Home doesn’t provide entertainment due to poor staffing levels and the carers sit around while residents sleep all day and Care Plans are not followed. Dementia skills are rare and staffing levels poor with a high turnover. The company involved insists it’s a funding problem. She has moved care homes reluctantly in the past due to neglect (legally fought) and now after 3 years and advanced dementia cannot move. A move would be detrimental and she is reaching the threshold for self funding. New residents with increased dependencies are moving in without an increase in staff. Falls are increasing and my mother is showing signs of distress. Long term staff have left so the environmental familiarity needed for dementia is absent. The Home’s suggestion to manage sun-downing is to drug with temazepam. My mother has no choice. She has to remain in a failing care home as her finances now mean she’s unattractive to many care homes plus she needs what familiarity she has to stay the same. I therefore continue to visit daily to ensure her bed is made, try to entertain her (and others), apply her creams and maintain her hygiene. She’s paid £300,000 so far to be left alone at night and drugged. Relatives are left to manage

My husband was diagnosed with Lewy Body dementia and Parkinsonism in 2020. I looked after him at home for almost four years. He was up half the night every night and I was becoming exhausted from lack of sleep. I felt very alone in spite of having family around. Eventually he was having so many falls that he was hospitalised and is now in residential care. I feel sad and guilty that I was not able to keep him at home. Being a carer can feel very lonely, but I was and am grateful for support groups and for our local Age Concern.