Real stories

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

Hiya this sounds really tough and just proves that everyone with Alzheimer’s disease is affected differently! My dad was diagnosed with early onset in November 2018 at the age of 57 and this has absolutely broken me because my bond with my dad has always been so strong. Over the past few years I have felt that I have grieved every single loss and adjustment we have had to make as a family . Dad has been affected through his cognitive skills first so his speech , ability to do tasks and independence went first . He walks but loses balance easily but the emotional connection between the family is still there and he shows this which makes it harder. He often holds my hand and gives me a hug and a kiss , the affection he shows my mom as well is beautiful but also heartbreaking. I find it hard when dad gets restless and I don’t know what he needs or wants and often I get upset myself because I feel like I am letting him down.

What I can take away from this is that my dad is smiling at the moment most the time and he loves to sing which melts my heart . This is the toughest journey anyone could go through no matter what age but I do find myself looking at my friends parents and wishing my mom and dad could have that .

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?

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.

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

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.

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.

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 ❤️

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

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.

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.

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.

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.