Jess smiling beside her dad at a special event

'Dad's hallucinations got worse and worse' - Jess and her dad's young-onset dementia diagnosis

Jess and her brothers began to notice worrying changes in their dad's behaviour while he was living alone. Following a diagnosis of Alzheimer's disease, the siblings set out looking for the right care home for their father.

My dad retired around five years ago from a job he had worked in for over 40 years. My parents divorced 20-odd years ago now. My dad didn’t remarry but he seemed happy enough. He was a fun, loving and do-anything-for-you kind of man.

Whilst I was saving up to buy a house, I moved in with Dad. Me and my brothers, Luke and Alex, had begun to notice that Dad was quite forgetful. He would repeat himself often. Dad would brush this off as old age.

At the time, my dad was 63, fit and healthy.

Jess Ford and her brothers sitting with their dad

Jess and her brothers, Luke and Alex, with their dad in 2019 at Christmas.

Encouraging Dad to visit the GP

When I moved out, that’s when he rapidly declined. I didn’t see him as often anymore and each time I saw him he would look lost and confused and his memory was really bad. Dad refused to go to the doctors.

Around a year passes, my dad starts acting strange. I get a phone call from a neighbour. Dad had locked himself out of his house and had fallen over.

The following day, I made an appointment with a GP. The GP told us to go to A&E as, his words, 'Your dad is not acting normal’. Dad's tests came back as having a water infection, which the doctors passed off as the confusion.

Dad had a brain scan and the front part of his brain had shrunk, but they did not diagnose him with dementia straight away.

After a stressful week, we managed to get my dad home with a bit of help. We got him a cleaner, and me and my brothers checked up on him regularly.

Seeking a dementia assessment

Dad's condition deteriorated rapidly. He lost a lot of weight, wasn’t washing, and started talking about a farmer that lived in his cupboard. It was apparent that Dad was having hallucinations.

I rang the GP again and he was booked in for a dementia assessment quite quickly. The dementia nurse was lovely. She gave me her work mobile number and said if I ever needed anything then to just call her.

That weekend, my dad turned up to my house in a state. The voices he heard from his cupboard were telling him he was going to be arrested. He came to tell us he was going to prison and would not settle. I did not know what to do or who to turn to.

I text the dementia nurse who told me to ring the local RITT (rapid intervention team) and the crisis team. We ended up having a few agencies involved to help Dad.

Dad's hallucinations got worse and worse, to the point he would hand himself in at the police station telling them that he was being kidnapped in his own home. He would knock on my door when I was at work and tell my neighbours that I was inside having eight babies and he needed to see me.

The distress this caused to him and us as a family was heartbreaking.

Dad soon got sectioned by the Mental Health Act as he became aggressive with carers and refused to let anyone in the house. He finally got on the right medication and the hallucinations stopped, but the Dad we used to know was gone. Doctors at the hospital diagnosed Dad with Alzheimer’s disease.

Deciding how to best help Dad

At this point, me and my brothers had to make a difficult decision. It was apparent that Dad could not care for himself anymore and he was a risk to himself. We set out looking for a care home for my dad, but because of his young age we kept getting turned down, Dad would be the youngest resident by a mile for most of them.

After months of stress and searching, we found a lovely home for our dad and he is really settled now.

Me and my brothers never thought that we would have to deal with this at such a young age. I was 24 at the time, my brothers, Luke 31 and Alex 27.

It was a very hard time in our lives and has affected us all. I imagine it will do for a long time.

Not being able to see Dad during the coronavirus pandemic has been so hard, but we know he is being looked after and generally isn’t aware of anything strange going on in the world right now. I kind of envy him for that!

My dad loves my dog, Elsie. When we were allowed to visit the home, she would always sit on his knee and he would be so calm with her.

Two pictures of Jess's dad - one holding a photograph of him with his children, and another with Jess's dog, Elsie

Elsie the dog loved visiting Jess's dad at the home.

I’m getting married in October (hopefully) and my wedding favours will be the Alzheimer’s Society ‘forget-me-not pins’. I’m hoping Dad can be there on my special day. I got engaged the year Dad deteriorated at home. When I told him the good news, he cried. He was so happy.

Even though his brain was playing tricks on him, he still had some emotion in there, and that’s the Dad that I wish I could have back. Dad loved his family and devoted his life to us. I know Dad wouldn’t want to be going through this. Life seems so unfair at times.

I hope this helps any other young people out there going through this. The help is out there and you are not alone. The best thing I did was talk to people and ask for help.

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If you are worried about the behaviour or memory of someone close to you, Alzheimer's Society can provide free support and advice on what to do next.

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17 comments

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Hi everyone. It's kind of reassuring hearingnall your stories. I feel less alone. I stay with my parents a few nights a week, really so my dad has support. Mum had her head scan this morning but has shown symptoms for about 4 years. Since June it's become so much worse. Tonight she wants to go 'home' and has packed 4 handbags with such random stuff. She says the things in this place are all the same but it's not her house. That's down the country! There's people visiting her who have been in the house and now she is worried where they are and what if they come back. She hides everything. There are no sharp knives in the kitchen as she has hidden them all and we have no idea where.
The doctor is calling my father on the 23rd March after he has viewed the head scan so hopefully this will open up some support for dad and I.
Dad and I have discussed wether or not to give mum the diagnosis. What are people's thoughts on this?

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Hello Alex,

Thanks for getting in touch. We're glad to hear that you benefit from reading other people's experiences. The best place to talk with other people affected by dementia is within Talking Point. It's a free online community, open day or night, where you can chat with other people who have gone through or are going through similar situations.

You might also like to call our Dementia Connect support line on 0333 150 3456 for advice and emotional support. Our dementia advisers are here for you when you need them: https://www.alzheimers.org.uk/dementia-connect-support-line

In the meantime, here's an article on asking to 'go home' that you might find useful: https://www.alzheimers.org.uk/blog/i-want-go-home-what-to-say-to-someon…

We hope this is helpful.

Alzheimer's Society blog team

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My dad was diagnosed with early onset dementia at the age of 53 and the pandemic has aged him by about 10 years and the rapid decline is difficult to see as someone who has always seen their dad as that strong, father figure. In the process of this, he lost his father to covid 19 which he doesn’t know how to deal with, especially as he was in a better state of mind than my dad. He is so stubborn and used to doing things his own way, trying to get him to try new things has proven to be very difficult. Alzheimers is a cruel disease which nobody can be prepared to deal with. This forum really helps and brings a sense of togetherness, thank you all.

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Hello Akshay,

Thank you so much for sharing this. We're very sorry to hear about your dad's dementia diagnosis, the loss of your grandfather, and how the pandemic has affected your dad's condition.

Would you be interested in sharing your story in a blog post, similar to Jess'? As you've mentioned, hearing other people's experiences can be really helpful. We are sure many of our supporters will be grateful for you sharing yours. Please email [email protected] if this is something you'd like to know more about.

In the meantime, if you're in need of emotional support, please call our Dementia Connect support line on 0333 150 3456. Our dementia advisers are here for you when you need them: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope to hear from you, Akshay.

Alzheimer's Society blog team

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I know exactly what you went through,my mum had lewy body dementia and she was the same it is a very frightening time for all of you ,my mum was in her eighties and we lost her last August ,you have to just go along with whatever they say and do and it's the hardest and most heartbreaking time of your life ,stay strong x

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The overwhelming delusions are difficult to deal with. Sometimes they are so ridiculous,but very real to my husband,that I just want to say ......
Cut out this nonsense.

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I was 24 when I became power of attorney for my dad with early onset dementia, I believe at age 63 for.him also.. it was a year or two of decline before he moved in to a long term care. He lost everything he worked so hard for... he almost ended up in jail! It was hard to get a diagnosis and get the forms in line with his understanding & permission. Very delicate situation..The general practitioner diagnosed him with depression, but we insisted he later got an MRI and he had had several small strokes. And finally vascular dementia diagnosis. He went through an angry, violent stage as well... we couldn't live with him on our incomes/his CPP, so it has been good that he is settled in is and more at peace with his 'retirement' as we remind him. And sometimes he has really nice days and he speaks a lot about highschool or when he was a young boy, which I never really heard much of growing up. You're right you're not alone, I feel like this story is very similar to yours..

Covid 19 has been so unfair to our families, already robbed so young of family time. God bless you all and hope you're well.

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A beautiful heartfelt story that had many similarities to our own experiences and brought back memories of those challenging sad times. Dad died at the end of 2014. Such a privilege to help someone you love tho. 💕 best wishes ❤️

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That was a very difficult and stressful time for Jessie and her brother.
All that her father went through.

But I am glad they got treatment for him and a good home for him to stay.
Thank for these true life even

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Your story really rings true with what we are going through with my Dad.
The hallucinations have begun to start and he often asks us to pick him up even though he is at home.
He was diagnosed several years ago now but I feel this pandemic has aided to the progression of his dementia.
It really is such a tough thing to watch your once outgoing and independent father go through.
Thank you for posting your story. I hope your Dad can be at your wedding. I too hope mine can walk me down the aisle this year. All things are crossed.

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I could have written your reply myself. This is EXACTLY what we’re going through right now. In fact my husband has gone over to put my dad back in bed as I type this. He doesn’t believe he’s in his own house. We have three young children too. It’s so very difficult right now. I can’t believe how quickly he has declined during this pandemic, it’s tragic.
We currently have the ongoing assessment from the rapid response team. I’m really hoping they’ll be able to give him some other medication ASAP . We’re so worn out and emotionally drained now with everything. Can a change in medication stop the hallucinations?

Thank you for sharing your stories 🙏🏼.

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I would just like to add that sometimes, hallucinations can be the result of developing a visual impairment affecting the retina, or developing cataracts. I have reassured several people like this in my previous career. Eye test required.

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Everything was arranged for my husband to go into residential care. He was due to go in 2 weeks time. I had a phone call today from the home telling me they can't take him now they've read the social workers assessment. This is from last year. He hasn't been reassessed recently. I'm at my wits end knowing what to do next. I thought everything was sorted.

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Hi Jeanette,

Thanks for your comment. This sounds like a very stressful situation. We would recommend speaking with one of our dementia advisers to discuss the next steps. They can also provide you with emotional support throughout the process.

Please call the Dementia Connect support line on 0333 150 3456 - opening hours are available here: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope this is useful, Jeanette.

Alzheimer's Society blog team

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Hi Jeanette
Feeling your pain, keep talking and writing communication is the best medicine. Well done to you.
It seems unfair Carer’s and Families going through this with our loved ones
Dementia is hard in Covid 19 even harder.
We all want the best for your loved one’s and for those who love and care for them.
We are important too, the experience is exhausting and emotionally draining.
We deserve a better structure to a system that makes it harder when u need it the most to be easier.
Good luck moving forward and make a cup of tea Again lol and take care x

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My 93 year old mother has stage 4- 5 Alzheimers and lives alone. She has a carer every day, a cleaner, hairdresser and chiropodist services organised for her. Mother is in rapid decline and does not know the day, month, season or year. Mother reads newspapers dailybbut has no idea about any current events. She rings my sister constantly, wanting her heating turned off, her television sorted,and the solar torch lights in her garden turned off because she thinks they are costing her money. Mother makes endless lists of shopping which she no longer does and her mental capacity to look after herself, decreases daily. We, her family of 4 siblings, are at the stage now where we know she has to go into a Nursing Home. Mother is stubborn, anti - social, deluded, in denial and will not hear of leaving her bungalow. She becomes very aggressive and verbally abusive towards me when i tell her she has to leave her home. We are now in the process of securing a POA for Health and Welfare which is the only way we can overturn mother's decision to remain. With my mother's attitude, I am unsure of whether any Nursing Home will even accept her on the basis of her negative behaviour and mindset.

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Hello Janet,

Thanks for getting in touch. We're really sorry to hear about the ongoing difficulties you and your family are going through.

If you, or perhaps your siblings, are in need of support during this, we'd strongly recommend speaking with one of our dementia advisers through our Dementia Connect support line on 0333 150 3456. As well as emotional support, our advisers can provide information and advice with regards to residential care options. Opening hours are available here: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope this is helpful for now, Janet.

Alzheimer's Society blog team

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