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I knew something was wrong. I visited GP and his test stated that it was just old age. My husband jumped on this and after, anything that was cropping up that I was unhappy about he just referred to it as ‘old age’ I tried to get him to go back to the GP. Eventually I took him back on a pretence of something else and spoke to the doctor and explained that I was very concerned because, he was going out like he normally would for a walk, and was very distressed when he got back because he found it difficult to find his way home. Other things also flagged up so eventually he was tested and had a brain scan and it was clear he had Alzheimer’s. Our life (retirement) completely changed, suddenly we couldn’t do anything we had hoped to do. Taking him out is particularly difficult because even if trying to shop you keep constantly looking for where he is because just one glance at something in the store and he had gone in that moment, then you’re running around the store in a mad panic. This was made more difficult because I was waiting on two hip operations therefore my walking was impeded, so trying to catch him or keep up with him was even more difficult. Soon after he was diagnosed with vascular dementia on top of his Alzheimers.
This did up the anti. We had help from the Alzheimer’s Society and from DWP who came and explained lots which made things much more simpler to understand, however trying to suggest something to the person with dementia is never accepted. When a visitor/nurse from any of the societies came, he would act as if he was going to behave, fully understood and promised to carry out all the request. After they left he did none of it. Life now is basically being indoors, he hates going out. Its hard because since he’s been diagnosed with Alzheimer’s / vascular dementia he’s always had prostate cancer for many years, this has now spread to his bladder. It required an operation which he just couldn’t understand and even though we left the hospital he couldn’t even remember that he’d had the operation, therefore being fitted with a catheter after was a nightmare! he kept trying to pull it out. 12 weeks later we went back to discover tumour regrown and there is also a stage three cancer growing. He doesn’t understand any of it.
He is not the man I married, he has changed to a very argumentative person, constantly keeping on throughout the day. Wanting food, which is prepared and put in front of him to watch him scrape it straight into serviette and disposed of.
He now suffers with sun downing and goes around house searching for his mother and brother getting frustrated as he can’t find them. They’ve all passed.
Night times he gets up so many times. Has showered and got dressed at 1.00 in the Morning (Oddly) as under normal circumstances, he refuses to shower and it takes some effort to shower, dry and dress him.

I won’t yet, place him in a home. He loves his home and happiest if we are indoors together. If I have to go for appointment, I have family and friends to sit with him. Apparently he doesn’t settle and keeps looking for me until I return. For that reason I can’t put him into care yet. I know he would be deeply upset. Also, I believe the cancer may take over the dementia and I want to be with him through the ordeal.

I hate this disease. It robs you of a loved one who is no longer the person you knew. Your life is not your own and it’s exhausting.
What I’ve described is barely an outline of what’s involved, how time consuming and difficult dealing with due to so many things which branch off which also causes upset and heartache.

The photo is of better times when we, with my son (his stepson), had many days out having fun and laughter and meals together.

My husband has dementia with Lewy Bodies which causes him to do the most dangerous and bizzare things. After caring for him at home for 6 years while I was still working, he was seriously at risk as also LBD goes hand in hand with Parkinson’s so his mobility caused him to fall often. The calls monitor would regularly go off and an ambulance could sometimes come out up to 4 times a week! One of the saddest things is his memory seems to of improved since before his diagnosis but his confusion is horrendous. He gets lost within our home we’ve lived for over 30 years, he gets confused with getting dressed. He shouts at me when I try to help him . He has double incontinence !Help really wasn’t out there until last November he ended up back in hospital and I had a meltdown saying I just can’t do it anymore! It’s not about me but I was sleep deprived and worn out. I can’t pick him up when he falls. It’s like looking after a toddler in an elderly body . I actually said if he comes home, I won’t be there. He’s now in a care home. I visit 3 times a week and call him on the phone daily but he’s cross with me . He says there’s nothing wrong with him! He’s safe, warm and fed, while I live daily with guilt

I was diagnosed with Alzheimer’s 18 months ago. I still feel fairly ok although I notice the changes happening slowly. I get lost, put things in silly places, can’t be relied on to go out on my own. My best friend gets my doctors appointments and takes me to them. If you spoke to me you wouldn’t really know anything was wrong unless you picked up that I stop mid sentence because I can’t remember the next bit. Since my diagnosis I have only had a visit from 1 health care worker who put me on a pill she said would delay the process since then nothing. I have a disabled husband who has had a stroke and we are muddling through together at the moment, but I must admit I am quite scared of what is to come. My husband is kind and does his best but I think in time it may become too much for him. The follow up care for people diagnosed with this disease is ignored and you are left feeling what next?

Mum I Miss You (We all do!) 😥

My Mum (Sue) Sunset happened 4 years and still hits hard and we all miss her. Mum was our rock she loved looking after all the grand children from the day they were born. The hardest thing that hurt me with this horrid disease was when she forgot the grand children. They loved her so much. Mum had Lewy Body Dementia which was very hard to care for due to both the memory loss and Parkinson’s. Mum was 64 when she was diagnosed and pass away aged 68! In my opinion We need to provide better knowledge and training to GP’s as they just diagnosed as mental health breakdown and prescribed depression tablets which masked the symptoms….perhaps if we had noticed we could have supported her with the correct medication. 😒 There needs to be more awareness to Government level so they can ring fence funds to support cures. Unless you have a member of the family with Dementia then you would not know anything about the disease. The funds need to be there for Alzheimer society: as the local support office closed down and by this happening he could ask for support…husband or wife’s who have partners going through dementia also need the group support with other people in the same situation.

My Dad tried everything possible to Care for her until Mid Stage and then it was so hard for us all to put her into a home. Dad would be there every day to be with her until the end. It was so hard to see her decline but we were all there for her like she was for us in the past when we down.
Love You Mum! 💔

It started with little things out of character. After 30 years marriage you know someone so well and then dementia changes everything. My wife had vascular dementia and I tried so hard to keep her at home till eventually she needed to go into care.
I visited regularly but she didn’t know me which was heartbreaking. She died last year and miss her everyday

It all started for my Wife & I in late 2020 early 2021
My Brother-Inlaw Kevin had been having headaches and started forgetting simple things for a few weeks,
I asked his Gp for an examination as I felt something was wrong.

I took Kevin to Early Memory Diagnosis & Support Service as arranged by Kevin’s GP.
He was Diagnosed with Mixed Dementia.
we were told that it possibly started 3 years earlier.

We knew nothing about Dementia or its effects on Kevin or who we should speak to about it.
we contacted the Alzheimer’s Society for information and we were sent a package that contained everything we needed. But as with many families you try to look after your own and find it so difficult to ask for help from strangers. We started to keep notes of any unusual behaviour.

Kevin started slurring his speech. Stuttering.

We tried to be as normal as possible and carry on with our day to day life.
Kevin and I went fishing as normal and I noticed that he was staring at his hands and not doing anything for at least ten minutes,
He became angry as he had forgotten how to set up his fishing rods.

Kevin has started to become argumentative for no reason

. Kevin & I went fishing. Again Kevin was having problems setting up . And got very angry and started swearing and kicking things. He settled down after half an hour but didn’t bother fishing again. This was very unusual as he is normally a quiet man.

Kevin hasn’t been fishing for a while He has started to lock himself away at home and not talking to anyone. We were finding this very stressful as we didn’t know what we should do to help him.


Kevin has been showing some signs of agitation, when he try’s to ask us a question but cannot remember what it is he wants to say he just gets annoyed,
on one occasion he got up and slammed the door and walked out of our

Kevin seems to be forgetting things more often We have noticed he has not been taking his medication, he gave us a bag containing 3 months worth of tablets.
We have asked the pharmacy for a dosette box to be delivered to his home every week. But he couldn’t work out what tablets he should be taking . So we had to give him his medication every morning and at night.

Kevin has not been washing or showering and is wearing the same clothes every day.

He was not eating proper meals or changing his clothes .
Khedive was relying on my wife his Sister & I more & more to sort out his problems. And his communication skills were getting worse.

He was getting very confused , and showing signs of depression, he has been crying a lot.

Kevin said he had lost his phone and was getting agitated and abusive. but his phone was in his hand.
When Kevin try’s to make a cup of tea or coffee. He has been putting the tea bags into the kettle, or pouring hot water into the coffee jar. Kevin has started to hide items and the say he has lost them.

Kevin has said repeatedly that he wants to go home. To a house were he lived as a teenager.
This seems to happen most nights between 6 pm and 7 pm
Kevin has started walking at night dressed only in a T-shirt and underwear,
when asked were he was going he said he didn’t know or he wouldn’t reply. When he was brought back home he fell asleep in his chair.
He has started to knock on neighbours doors but does not make any sense when asked.
Kevin has also seen going for walks in the evening without knowing were he is going, he once knocked on our door late at night and was short of breath, very emotional and tired.

Kevin has been coming to our house every day in the mornings sometimes on his own or when collected,
He stays all day and has his meals and watches tv . When he goes home he forgets were he lives and needs to be taken home and on occasions he has become emotional and starts crying. And has to be undressed and put to bed

He has started falling over as he is unsteady on his feet. He fell over when he walked around the park he was exhausted as he fell he cut the back of his hands on the gravel. When we tried to help him get up he became aggressive,
When he was taken home he slumped in his chair and went to sleep.

Kevin had a visit from Herts Care.
He was asleep in his chair slumped to one side. We had difficulty in waking him ,
After several minutes he said he was not talking and refused to answer any questions .
He walked to his bedroom and shut the door.
After ten minutes he walked out into the garden and he became very aggressive and was taken to the lHospital by ambulance. He was placed in handcuffs . And was restrained in the ambulance. But on the way to the hospital he calmed down and was talking about football. He couldn’t remember anything about what happened.
The hospital suspected that he may have had a stroke. He was moved to the stroke ward were he was sedated every day as he was agitated and aggressive the security guards had to be called to him, two or three times a day.

He was then under section 2 of the mental health act for 28 days As he was a danger to himself and others. During this period he has continued to loose all of his cognitive skills and had been unable to look after himself.
He was then placed on D.O.L.S Deprivation of Liberty Safeguards.

During this period he continued to deteriorate , sometimes not being able to feed himself he lost weight , he started to shuffle when he walked and started falling over, we noticed bruising on his legs and arms were he knocked himself when he fell.

Now he has been sectioned under section 3 of the mental health act .

We visit Kevin 3 sometimes 4 times a week and have done for the last 3 months , we have found the whole process very stressful we get telephone calls at least 3 times a week to tell us that Kevin has been in an incident, which normally means he has been aggressive or has fallen .
We feel exhausted and it has taken its toll on family relationships, we feel that there is not enough help for families who go through this terrible illness, we are both pensioners and we are not entitled to any financial help as carers for Kevin.
We travel 60 miles a day three times a week. to visit him .

Over the last 3 years we have cared for him and continue to care for him.
we have to feed him when we visit as he cannot feed himself. And we try to keep him entertained but he just wants to walk and walk around the corridors, until he is so exhausted he has to sit down or fall down.

the government should prioritise this dreadful disease and give families more help and advice.

I am positive that their are many families that have and are going through exactly what we have been through and have similar stories to ours.

Ray & Angie

Mum was diagnosed with vascular dementia 2 years ago and although her decline has not been too quick during those two years I did have to move in 12 months ago then 5 months ago gave up my job so I can care for her full time.
We lost my Dad in Summer 2019 which was swiftly followed by the pandemic during which Mum had to shield due to an auto-immune disease. It was felt that these circumstances, along with the death of her best friend, were the trigger for her dementia.
We started to realise Mum's issues weren't necessarily all grief or age related and after an MRI the memory consultant could see evidence of damage to Mum's brain.
My being able to care for her full time means that we keep as busy and active as possible which is both important for Mum's brain and my sanity!
We attend the Alzheimers Society Singing for the Brain and Love to Move sessions weekly and are involved with a local carers charity which arrange lots of events and outings for both the carer and cared for to attend together.
I get about 7 hours a week to myself when Mum goes out with a friend or the the hour a week of companion care that we pay for. Other than that I am with Mum 24/7 so yes, this means during the night too, if I'm lucky I get 5 hours sleep a night.
My life is very different but I am honoured that I am able to help my Mum at this time.

I am now caring for a third member of my family with various forms of dementia. I have been doing this since 2005. My mother had vascular dementia for six years, my sister had posterior cortical atrophy for thirteen years, ten in a care home, five bed bound. My mother in law is just about to go into a home after nine years with vascular dementia. I attended a House of Commons event with the Alzheimer’s Society but feel nothing has changed. It is a constant fight for the right care.

My husband, Kevin.
At 55 he was diagnosed with Lewy Body. If he had a cancer diagnosis we would have received more help. They said he was too young to have dementia and that he was depressed. GPs weren't educated to notice dementia in someone so young. Finally someone listened and sent him for tests. At work he was accused of being on drugs because of the vacant looks. So he gave up work and went to the gym as this is something they say keeps the brain active. People in the area got to know him which was great when he forced open a gate and we had to go look for him. As he got worse I had to install a camera so I could still work. Things progressed and I couldnt keep up with the abuse. He was sectioned after hitting a nurse The first home he went into was only equipped for old people and they couldnt cope with his athleticism. He jumped the fence and they found him in a graveyard. He was lucky enough to be moved to a better home that could accommodate his needs. His body died just over a year ago. His personality and mind died long before that. I thought I would be hardened towards his passing as I had grieved for so long but it hurt just as much and still does.