Dementia Support Line
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.’
Elaine robinson
saysNeil you are truly inspirational and your mother will be proud of you x
Sue Young
saysHi Neil. Your story has really touched me. My mum died about a year ago. She too lived with Alzheimer’s- as you say it’s a cruel disease. I feel for you having reached the point where you are looking into care homes. I recall how difficult this was for me. It’s such s difficult time but for my mum it was actually better than her staying with us. Stay strong Neil. Thinking of you. Sue
Julie66
saysSuch a lovely story about caring, your Mum must be very proud of you Neil, you are doing a very difficult job. I look after my husband and it's so hard, I get very emotional at times. Well done you are a very strong person
LORNA KING
saysNeil your doing great your mum will still be so proud of you even though her mind is else where , never feel guilty as your mum needs this specialist care and u can be her ever loving son still and be there as a son and not a carer, i speak from the heart as my mum had to go in to nursing care throu the same demetia and altzimers at 67 and its hard for them as well as us but 6 months on she is settled and joining in activities in the care home , and getting a lot of good care , which means i can go visit her and do things like read to her sing with her paint her nails ect and just enjoy quality time as her daughter and not carer . So neil stay strong and enjoy time when your mum knowing u have put her health and saftey first she will always love you in her own little way x
Susan
saysDear Neil,
like you I am now looking for a Care Home for my husband and this is so hard. I have yet to find one that I feel is right for him. I don't want a large place with a lot of people it would be better for him to find a more homely place.
I also worry that he will be lost and confused and people
won't look after him properly but after seven years l am
feeling very tired and in need of a rest and my patience is
wearing thin at times because l feel so tired and I can do nothing to make him better.
This is a long slow terminal illness with no cure and very
cruel not only the person but there careers. No wants to make the decision to use a Care Home and some will say
we should keep the person at home at all costs.
BUT how about asking them to look after your loved one
all day and every day for just a week. l wonder how they would feel after doing this.
Take care
Lynne Harrington
saysI can totally relate to this story. I feel my mum is disappearing before my eyes. Her carers are wonderful and I want her at home as long as possible and the thought of a care home breaks my heart but I know I have to do the very best for her. It's such a horrid illness.
Sandra Bickerton
saysMy heart goes out to Neil and his Mom - my Mom was 58 and I was an only child of 16 when Mom was diagnosed with Alzheimer’s- that was in 1976 and no one knew much about it. Neil’s story and feelings are everything I felt and my heart goes out to him as I understand the love he has for his Mom. My Dad and I cared for Mom at home then as there was no way near the support there is today - thankfully the Alzheimers Society made this a reality for many and continue to do a great job supporting families and friends. I understand what Neil says about the disease meaning you grieve for someone whilst they’re still alive, which for me shows his great amount of love he has for his Mom. I hope Neil gets some comfort for his Mom getting care as the caring staff are trained and professional to help - that’s so important and I just wish my Dad and I could have had this help. God bless you both x
Trudy
saysYou are a very special Son, Thank you for supporting your mam as she too young to go through this and you are also too young to see this happen I too Looked after my mam although mam was Late seventies when given the diagnosis and we were lucky in that we managed to keep mam at home with dad till the very end we lost her aged 86 last August but I feel we had an easy time all mam did was smile I miss her so much Love and respect to you xxxxxxxx Take care of yourself xxxx
Tina
saysWhat an amazing son. You should always be proud of what you have done for your mum. You have such good memories of your time together before the illness set in. That is what you have to hold on to. Good luck for your future. Always remember to tell her you love her and hold her hand.
Fiona
saysWhat a moving story and what an amazing job you have done and are doing Neil. You have a commendable outlook. Very best wishes to you and your Mum with this next challenging chapter X
Margaret Park
saysIt is so wonderful to read the lovely comments about relatives who are affected by Dementia and surrounded by so much love, and understanding, if only everyone was like that. Just flick you mind back to when you were born, the beginning of a precious life , and who cared then and did everything for us. We don't remember the all the details but we are here today to say a very big Thank you and let these very precious people feel the warmth of our love for them. You will get your reward.
PS, I am aware that not everyone has had a good life & has behaved well, but that must not stop us doing our best . Remember "It's love that makes the world go round" well done to you all.
Reach out because a lot of love is on it's way to you ,from Me. xxx
Jacqui
saysWe are into our first month of my mother-in-law going into care, the first 2 weeks I have to say were horrific, we were both overwhelmed with guilt to the extent we were removing her from the home. But we calmed down and thought about her needs and not ours. We visit regular, I was there last night painting her nails etc, and she said she loved her new home, we can see now how happier and relaxed she is, she is kept busy with activities, but most importantly she has made so many new friends and has someone to talk to whenever she wants to talk night or day. Our guilt has been replaced with contentment in realising that where she is now is the safest and happiest place for her. Yes Neil it will be the hardest thing you do, but in time you will smile and realise it was the best decision you could possibly make.
Jamie Bentham
saysWell done Neil, Thanks for sharing your story. Take care mate. Love and respect.
Sarah Buxton
saysA heartfelt story Neil and you are an amazing dedicated son. I the same am going through a very upsetting time as my mother too has suffered with Alzheimers for 9 years now and the guilt and overwhelming heartache for your loved one is there 24/7. I am strong and I care for my mom every day but the pain is unbearable seeing your loved one suffering. Keep Strong your doing amazing Kind Regards Sarah
Sara
saysWhat a story I understand how you feel. When my mum went into a care home the guilt and frustration my sister and I had was horrible, but deep down we knew it had to be done.
Unfortunately we lost mum in September and we are just starting to remember the good times without those horrific times popping into our heads.