Dementia Support Line
Real stories
Dealing with mum's young-onset Alzheimer's diagnosis: Neil's story
A diagnosis of young-onset Alzheimer's disease 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 young-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 between me and mum
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 condition.
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 of Alzheimer's disease 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.
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.’
Diane
saysEverything you say is everything I have faced with my mum. She is older than yours and was diagnosed nearly 5 years ago now aged 84. Mum has been at home with care until she had a fall and I too have had to make that decision to put her into a care home where she will be safe. I didn’t want to do it but her frail ness and inability to cope at home meant she was in danger. It has been heartbreaking she became angry with me as she didn’t understand why she was there. A month on and she has settled, she is getting excellent care and is as safe as she can be and while I know she is at high risk of falling if she does someone is on hand quickly. She is joining in with all the activities and is smiling again. It’s not what I wanted but the disease robs you of everything and any choices you once had. I like your analogy it really is the long goodbye at each stage you grieve for another loss. All you can do is what is now best for your mum and clearly your love for each other will see you both through.
Annette
saysAn absolute inspiration, I am in a similar situation and a smile, a giggle or a hug can make it all worth while. Strength, love and patience are required, but every precious good memory makes it all bearable. X
Clare Wimbush
saysThis is my story exactly we are walking in the same shoes .
Kathleen mower
saysYou are a wonderful son! God bless you a d your Mum.
June
saysYou are very strong which you have to be but it’s hard my mother has had it for ten years now still at home with caters in four times a day I feel very angry that she has this but we have to care for them as much as we can
Tricia Quail
saysWhat a wonderful young man so young to after go through this terrible journey with your beautiful mum , one of the hardest thing I had to go through , watching our beautiful mum go through this very sad journey words are hard to find , just be there for your beautiful mum you will find the strength 💖x
Tracey lamb
saysHiya Neil just read your story . My dad has Alzheimers . It's so sad every time I look at my dad I could cry but need to be strong for him . Thank you for sharing your story and hope one day a cure will be found xx God bless xx
Iris Burnage
saysYour story has a special place in my heart as my father was diagnosed with Alzheimer's disease back in 2005, I too cared for him alone until the time came for him to go into a home, but I still visited him every day. You will be strong, and you will cope, I did, but it's the hardest thing I've had to do.
Rosie
saysSuch an emotional read. I just been through the same thing with my mum. Such a hard thing to have to do, 7 years watching her slowly slip away, heartbreak for you and her both ,
Trisha
saysWell done young man. Im sure your mum is very proud of you.x
Lyn
saysYou are a credit to your lovely mum what a fantastic son you are your love foe your mum is beautiful its a terrible disease i have a friend who as just been diagnosed its awfull god bless you and your mum take care
Karen
saysBless you. Very hard. My mum passed
end of last year. She had Alzheimer’s for quite a while. I cared for her.
Ashley Skaife
saysMuch love, I’m in a similar position and determined like you to let Mum enjoy her life at home as long as possible. I hope amongst the daily heart ache you get moments of joy and memories to treasure forever. Keep up the great work, I’m sure she appreciates it..,,
Leanne Corcoran
saysYou are an amazing man. I just lost my mum to vascular dementia like your mum it was early onset. My dad also has alzheimers. You are a credit to your mum. Cherish every moment sending love prayers and support x
Sue Weymouth
saysThank you for sharing your story, such a horrible illness and each day brings new battles. You are a credit to your mum to care for her with such love, respect and fun too. Take comfort that her welfare and happiness has always been a priority.
Amy
saysThanks for sharing Neil 💗 One of these days I may write my own story, although similar to yours. #endalzheimers