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.’
Lin Jones
saysThank you Neil for sharing your heartfelt story. So important for us all to understand this awful illness. You are an amazing man caring for your Mum as you do. I know it's not easy. Feel no guilt about the next path you have to take, it's the right one for you both and you do it out of love. My love to you both.
Lin Jones
saysYour journey with your Mum through Dementia has been an incredibly moving story Neil. It's obvious the close bond you have and what a wonderful son you have been. Feel no guilt about the next stage you are showing amazing courage and love by taking the right path for you both. Love to you and your Mum.
Pam Selley
saysDear Neil, thank you so much for sending me this link. Having known Yvonne since we were 12, the tears just fell, and having been through this with my Mum, I feel your sadness about the 'long goodbye'.
As you know, I think you are an amazing son, but you must always remember that you must maintain your own friendships, because you still have a life of your own.
Take care Neil xxx
Janette Pelham
saysA touching story Neil. Your mum must be very proud of you. I do wish you both all the best and let hope they find a cure x
Jade Barrett
saysYou’re amazing Neil. Truely admire what you do for Yvonne. She’s very lucky to have you. Stay strong. Love to you both ❤️ Xx
Gail Owen
saysAmazing man neil..I went through the same with my beloved darling mum..we were best friends as well as mum and daughter and i had to watch her face before my very eyes..she couldn't walk or talk in the end and it was heartbreaking to see her..we lost her in October. You are doing a wonderful job x
Lin Jones
saysThank you Neil for sharing your heartfelt story of yours, and your Mums battle with Dementia. Those of us dealing with this can appreciate how difficult a journey this has been. But you must feel proud of yourself, as no doubt your Mum would have been, had she been able, and you must try to feel no guilt with the next path you have to take. You have been an amazing support and carer for your Mum, but most importantly an amazing son. My love goes out to you both.
Georgina
saysOh Neil this made me cry, you have such a big heart and I admire you!
Always here if you need anything
Hannah Gadsby
saysYour Mum is very lucky to have you and you are an incredible son. Love you. X
Simone Meade
saysWow what an emotional read. Whilst she has been hugely unlucky to have been affected by this illness, she is also incredibly lucky to have you as her son.
I wish you the best for whatever the future holds to both of you.
Michael Reilly
saysA heart felt story, written from the heart of an excellent son.
Val Marian
saysYour story made me so sad Neil.
You are a very brave and special son Neil. Only wanting whatever is best for your Mum. When you find the right place for her to be cared for you must start to live your own life knowing it is want your Mum would want for you.
God bless you both
Love Val
James H
saysA wonderful and very moving story. It brought a tear of sadness but also a tear of happiness - the bond and love you both share is magical!
Robert Crowley
saysNeil
I buried my wife Julie on Friday. Just like your Mum she had died purple hair. The speed of degradation was frightening in the last 6 months. But it was a privilege to assist my wife in her personal care until I was not able. It is challenging doing it. I was retired for the last 3 years but the impending down ward path started about 8 years ago. For those who have friends and family I can give you words which helped me understand how the sufferer feels and what you see:
Do not ask me to remember,
don't try to make me understand
Let me rest and know you're with me
kiss my cheek and hold my hand
I'm confused beyond your concept
I'm sad and sick and lost
All I now is that I need you,
to be with me at all cost
Do not lose your patience with me
do not scold or curse or cry
I can't help the way I 'm acting
I can't be different though I try
Just remember that I need you
that the best of me is gone
Please don't fail to stand beside me
love me 'til my life is gone
If I knew who wrote them I would give credit, but I found that on days when I was failing they reminded me of my wife's distress. To see fear and confusion in her eyes was very distressing, knowing there was nothing you could except tell her you loved her always and forever.
Jeff
saysDitto.