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.’
Linda Shires
saysDear Neil, I would just like to say what a wonderful son you are in supporting your lovely mum, you are doing a fantastic job and you should never feel guilty about the decisions you are making for her. My mum was diagnosed in January 2018 and I am her primary carer. It was a difficult task and took me a while to get the support of carers visiting her in her own home each day, but they are fantastic and it is reassuring to know that they call in each day to assist her, in case I can't get to her. However, it doesn't stop me from feeling guilty if I miss a day without seeing her and giving her a cuddle, and it breaks my heart when she doesn't always recognise who I am. I work full time and went through a nasty divorce last year after 38 years of marriage, I thought that was the worst thing ever, until this cruel illness took hold of my mum, I also don't have the support of family, therefore, I have had to make decisions on my own, but I now know that I am doing the absolute best for her, keeping her safe, warm and happy in her own little world is my top priority and when she smiles at me that is the best feeling ever.
Diane
saysNeil you are a wonderful son. I am going through this now with my 66yo husband, he has mixed dementia/Alzheimer's components with hallucinations/delusions/and I am alone as his caregiver. I just read 30% of caregivers die from the stress before the patient. I am so heartbroken and sad.....we are truly grieving them in the longest goodbye as time goes by. Just when I think I have no more tears, I cry more. I don't know how I will survive this journey.
Susan Elliott
saysI have been diagnosed with Alzheimer’s at the age of 62. Meditation slows the deterioration and I continue to lead a normal and full life. Last week in New Zealand I parachuted from 18000feet. What an experience! I won’t give in to my illness and I am very lucky to be surrounded by family and friends. Choir singing and running 5k park runs all help. I often repeat myself but friends and family understand.
JoJo Green
saysThank you for sharing your story you have such a fabulous bond with your Mum and you are very lucky to have each other . I myself went through the Dementia journey with my Mum and now how challenging it can be . Hang onto those magic moments X
Shirleyann Munro
saysLovely caring story Neil,I was in the same position as you with my aunt,who sadly passed in December ,take care an keep well you are doing great.
Liz Airton
saysJust makes me more determined to get the word out to enable people to understand and be aware of dementia .
Peter Garside
saysCongratulations on such a moving story. NHS should provide you support to cover all the financial costs of Care in your Home. This is providing the situation is becoming "complex". I had great difficulty getting NHS to help me care for my Wife Pauline, but was successful.
After Pauline's death I launched a website to help people like yourself. Alzheimer's Society carry a link & featured my website last Spring which led to huge interest.
Details are on https://continuinghealthcare.wordpress.com/
The NHS CHC situation is in a chaotic state & many deserving cases are being refused. This is getting wide publicity now. If you know how they Assess Cases before your own review this will be helpful.
Best wishes. Peter Garside
Thanks for sharing, Peter. We hope you're keeping well.
A diagnosis of Alzheimer’s or indeed any type of dementia does not carry automatic eligibility for CHC, as much as we would like it to. Eligibility for CHC funding is never ’condition specific’ and relies upon identifying the person’s needs in line with the criteria laid out by the Department of Health.
Here at Alzheimer’s Society, we suggest that the best way for people to access NHS Continuing healthcare (CHC) if they think they are eligible or they represent someone who they think is eligible, is to inform themselves fully of the CHC criteria before the process starts.
Take a look at ‘Tips on preparing your case for NHS continuing healthcare’ (https://www.alzheimers.org.uk/get-support/help-dementia-care/nhs-contin…) and download our free booklet for further information.
Gordon McTaggart
saysThis is such a heart wrenching story so similar to my own. I lost my mum to this unseen illness and I too could not protect my mum from it. A special bond between mother and son. Your story has brought tears to my eyes.
Diane T.
saysLove keeps us going and together, never give up hope.
VC
saysRead your story with a tear in my eye, you have been such a wonderful help to your mum. No doubt the right decisions will be made. Can relate to your story as was in a similar situation myself - my mum was diagnosed with early onset Alzheimer’s 8 years ago and circumstances lead to her going into care 4 years ago. Like so many others, there is much admiration for you and carry on being that wonderful son.
Tania
saysSuch an amazing young man. Thank you for sharing your heart felt story. I have the pleasure of working with people who have this awful illness and I admire every single one of the family members who are in that caring role because like you say Neil, suddenly the ones you love are being taken away from you a piece at a time and it is heart-breaking to see. Stay strong you are doing an amazing job.
Margaret.
saysMassive respect to you Neil. I walked the same journey with my darling husband Sean. It was awful but I I would not have missed it for the world. I wish you and your Mum many happy days together. Please do not let guilt get in the way, you are doing all you can and more. Sending all my love to you both.
Steve .P
saysYou are a wonderful and caring son. I wish I was as strong as you Neil. You may be a only child but you’re not alone, although I’m sure you feel that way. I thank God that I have two older siblings for support. God has certainly blessed your mother with a great son. Don’t let guilt get to you. It’s quite obvious you have done all that you could. God bless both you and your mom. I truly believe that she knows how much you have done for her.
Steve .P
Ayokunle Moses
saysVery touching story, although i have been facing thesame scenery since over 28 years ago. My dad was diagnosed of this heinous disease in year 1990 and i was one of the primary carer at early age of 10 years old. We managed him till he died in 1996 at age 72. The most devastating thing is that we had lost another brother to this dangerous disease in year 2004 and presently 3 other senior siblings from different mothers but we of the same father are currently battling this disease while one of them are at critical stage of stroke now. I wept uncontrollably the last time i paid a visit to UK to see him. May God have mercy and make there be cure to dementia! There is nothing as sad as losing prime and bright relatives to this heinous disease. I look forward to miracle for Fred Bola Moses!
Dawn Wicks
saysReading your story has made me cry . My dad has Alzheimer's and still lives on his own. Its so hard especially when your making decisions on your own. It's such a cruel disease...xx