Real stories

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

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.

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 for Dad

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 after his dementia diagnosis

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.

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.