Share your story

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.

I was 14 when my dad was diagnosed and it was so confusing seeing him slowly stop being able to parent me. Although at first I didn’t comprehend what was going to happen to him, by having a diagnosis I was able to understand why he was acting the way he was and that he could not control his behaviour. Dementia is not a natural part of ageing and the impact it has on society and people like me, my dad and my family are truly devastating. I work first hand with diagnosing people with dementia, and I cannot tell you the impact the lack of funding has had on waiting times and jeopardising patient care. I’d like the government to understand this isn’t going away and we need to act now to prioritise dementia diagnosis and dementia care in this country.

My husband was diagnosed with Alzheimer’s in 2012 the specialist was kind and understanding.
But the first few years were not to bad we could still do things together,and we had help.
But my husband was taken into hospital with chest infection and on trying to put him on a standing swivel he broke his humorous bone in his arm.
From this happening he stopped walking and we had to have carers in 4 times a day seven days a week.Our home was adapted for he needs.
It was very stressful going from having myself and 1 carer and our daughter looking after him.
Some carers were very good some were awful, and in one month alone we had 38!carers.
Our social worker was excellent, plus the district nurses.
but i had to fight for a lot of things the proper pads etc . and with the care company over his care.
He was double in continent and we had to liquidise his food and was having seizures.
Every morning he would give me a lovely smile and a kiss and at night. We have a strong faith and I had a lot of love and support from my christian family and a local hospice.
Sadly he Died in 2021 i miss him more each day i was lucky to have him at home and though it was hard I would do it again.
Every case is different my husband was gentle and i have
friends who’s partners were not and they had to go into care.
More should be done in training carers and help in the home and social care.
People should not lose their houses and savings even being at home cost over £800 pounds a week which we contributed to.
I would gladly pay more to social care and the NHS for better training because a lot of professional staff do not understand Alzheimer’s.

My husband had vascular dementia for which there is no treatment and is a very hard diagnosis. When the dementia took over he would be completely out of it, I had to give him medication, his diabetes injection, wash him, toilet him and every else involved so I became his carer not his wife with no help from any source. The picture shows how we were.

My parents lived at home together. My Dad had other issues and the dementia was overlooked initially because of this. My mother also had dementia which we were not really concentrating on as Dad was getting worse. He needed morphine regularly for face pains. As a result of Mum not having a diagnosis she was giving him way too much morphine daily as not aware. Though times for family. Once we had diagnosis of dementia for both the help we received was amazing. From social workers, mental health department, consultants, funding. You feel alone and scared as a carer until the diagnosis is given and help can be sought.