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Neil with his mum at sunset

Neil's story: 'I want to protect Mum till the very end.'

A diagnosis of young-onset dementia can turn lives upside down. But for Neil and his mum, Yvonne, their special bond remains strong. Neil shares the new challenges facing them as Yvonne's condition progresses.

Back in 2013, my Mum Yvonne was diagnosed with early onset Alzheimer’s disease aged just 60, I was 29.

This was a huge blow to us, which turned our lives upside down. Life would never be the same again.

We had just lost my Nan in the February of that year. It was her death that hit my Mum extremely hard and this was the trigger for the strike of Alzheimer’s.

A special bond

Mum and I have a special bond and I love her with all my heart; I am her son and her principle carer. I do not have any siblings so it’s just Mum and I living at our home.

I was all set to move out when the news that Mum was ill came and I chose to stay.  

Mum and I like to go for walks, take a drive to the coast for some sea air, or pop to local garden centres for coffee and cake. I also paint Mum's nails so she still gets some pampering! Making sure Mum has a smile on her face and a laugh daily is really important to me.

I am extremely proud of my Mum and how well she deals with the huge challenges she faces daily with this unforgiving mental illness.

Neil hugging his mum, Yvonne

From the very start of our journey, one of my main goals was to keep Mum at her home for as long as I possibly could. I have increased her care packages as each hurdle has presented itself.

The caregivers who work for the care company we use have all become Mum’s best friends, which is something beautiful to come out of this.

Mum now attends a day centre at a local nursing home five days a week, which she loves. It’s great for her mental and physical stimulation and the staff are fantastic and extremely caring!

As we progress through this illness, Mum’s needs are getting ever more complex. It’s the hardest thing in the world to witness as I can’t make it go away.

I want to protect Mum till the very end, but the Alzheimer’s is so cruel and is taking her away from me. It really is the long goodbye...

The effect on loved ones

Not only does Alzheimer’s affect the patient, it has a huge effect on family members who care for their loved ones and this has had a massive impact on me.

I have feelings of guilt and anger that my Mum’s quality of life has been taken from her. The upsetting scenes I have had to witness as Mum gets more poorly will leave a mark in my mind for the rest of my life.

Being an only child as well has been tough, as I don’t have the support from other family members.

As well as working full time I have really dedicated the last seven years of my life to making sure Mum’s every need was met, given the harsh hand she has been dealt with this illness. 

Neil with his mum at Memory Walk

Supporting Alzheimer's Society

In October 2017, Mum and I walked 5k at the Berkshire Memory Walk to raise money for Alzheimer’s Society. My family, friends and colleagues dug deep and we raised £2,700!

Now, Mum requires 24-hour care and I am forced to look into care homes.

It’s a heart-breaking decision, but I have to make the right choices for her to ensure that she is getting the care she needs and deserves. 

For any other families caring for loved ones with Alzheimer’s, all I can say is: be strong! One of the hardest things you will ever have to do is grieve the loss of a family member or friend that is still alive.

Thank you for reading my story. Let’s hope a cure can be found soon!

‘Remember not everyone’s disability is visible, be patient.’

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93 comments

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My mum has dementia - she is 98 and it really started when she was 96 so lucky had my mum so long - she is in a lovely home and is very happy there prefers it to staying in her own home there is more going on and always cups of tea and home made cake - she falls asleep most of the time and I hope for her sake she just falls asleep one time and passes on. I read years ago that dementia was a wicked illness and now I am experiencing it I agree takes your loved one away.

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My dad was diagnosed with alzheimers at 70. He was looked after by my mum and I. I never moved home but wasn't too far away. Like you I am an only child. My dad started refusing help with personal care before Christmas and after going into hospital after an infection, he was moved to a care home. It was one of the hardest things that I have ever been through because I felt that I had let him down and hadn't protected him. He now doesn't get out of bed without a physio which is only twice a week so his mobility is going. I can't help but feel that if he hadn't been moved there then he would still be walking and wouldn't be declining so fast and that it is my fault. Sometimes I feel OK but reading your posts made all of the emotions flood back.

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This is such a moving read and I’m in awe of your strength these last few years. I’m newly navigating the world of dementia with my grandmother and it has been such a tough experience but rewarding to know you can make someone’s life feel that little bit better when they themselves feel they are losing control. This next step you are taking will be tough and I’m sure, lonely at times but it’s clear from that picture of you both that you have a special bond. Hang in there!

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As a social worker in adult services I see stories and sheer love like this often, but not always. You are lucky to have each other, just remember this condition will impact on both of you so much sure you tap into all the support avaliable x

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Neil - I empathise entirely with what you wrote as I'm facing exactly the same situation except that it's my wife I'm caring for rather than a parent. By the way the poem was written by Owen Darnell, an American gentleman who cared for his wife with her Alzheimer's.
Big hugs to you.

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Big hugs to you Neil. You are a truly amazing son. I lost my mum to this horrendous disease in January and like you I cared for her myself for the first seven years. It broke my heart when she needed to go into a care home. As you say the hardest thing is grieving for a loved one who is still with you. I wish you and your lovely mum Yvonne all the love in the world. Stay strong. You are doing as awesome job xox❤

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Hi Neil
What an amazing Man U are and how proud yr mum will be of u.
My dad has dementia and Alzheimer’s and has recently moved into a home. It’s awful. I have a brother but he isn’t interested and provides very little support to my mum or to me. Mum and I battle with guilty feelings that we can’t have dad at home! I try to laugh at something dad does or says every day but I’m screaming inside!
Keep up the good work yr doing. Be strong but allow yourself some time to be pissed off and sad. U can’t botyle it all up. Big hugs xxx

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Everyone son or daughter who ever feels guilty you can’t be their 24/7 carehomes are the place to be you can visit any time still be there for your parents knowing they are safe guilt is a thing we all go through I took a few months i now no we done it right

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I lost my mother last week to this terrible disease your story rings so many bells. I use to take her to the hairdressers every 2weeks and I can still see her looking in the mirror there and a smile would come on her face and from a few moments when I took her home she was my mother again I put it down to the massage and heat on the head stay strong

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All the messages are testament to the appreciation of a caring son . You have touched many hearts. As others have said, you should feel no guilt (although I know that is easier said than done) and allowing yourself your own life is also very important. Your mother may settle well in a home and I hope that you find one where you can also have confidence that help is at hand when she needs it. Good luck.

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Thank you for sharing you experience is just amazing . and you're a very wonderful man God bless you and your mother I am pretty sure she is very , very proud of you.

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Wow Neil, your story feels sadly all too familiar - my mother was diagnosed with fronto-temporal dementia aged 60 (6 years ago) and I am 35. We are just now at the stage of having to move her to a care home permanently, having tried to keep her at home as long as possible. Watching her deterioration is thoroughly heartbreaking. You have my full understanding and empathy, and I totally agree with your wise words - stay strong. Also hold on to all the good memories. Thank you and well done for sharing your story.

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A wonderful and extremely moving story which I can totally relate to. I too took care of my mother who was suffering from dementia for 10 years - and I recognize all the hurdles you encounter along the way, particularly as an 'only child'. My very best wishes go out to you both - and yes, staying strong is very tough, but it is the only way to deal with this devastating disease.

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You are both amazing and so very special to each other. My mum also suffers from it and so I understand completely. Best wishes to both of you.

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Dear Neil I can not put into words how much I admire you I am living with dementia and have been for 4 years , I am very lucky with the help of my family and friends I am managing to hold my dementia at bay. I do quit a lot with the Alzhiemers Society going out giving talks about my Dementia hoping people of all ages will get involved with people living with Dementia all we need is a smiling face a happy word some one to talk to this is what you are giving to your mum Neil plus all your love and kindness . The DEMENTIA JURNEY when getting to the end is very demanding I could only wish that every one living with DEMENTIA has a SON or DAUGHTER or even a very good FRIEND that cares as much as you NEIL I take my hat off to you . If I could I would give you a big hug from your mum remember she still loves you even when she doesn't or cant tell you

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