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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.’

National Dementia Helpline
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90 comments

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A 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!

Neil

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.

Ditto.

Your 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

A heart felt story, written from the heart of an excellent son.

Wow 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.

Your Mum is very lucky to have you and you are an incredible son. Love you. X

Oh Neil this made me cry, you have such a big heart and I admire you!
Always here if you need anything

Thank 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.

You’re amazing Neil. Truely admire what you do for Yvonne. She’s very lucky to have you. Stay strong. Love to you both ❤️ Xx

A 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

Dear 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

Your 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.

Thank 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.

Thanks for sharing Neil 💗 One of these days I may write my own story, although similar to yours. #endalzheimers

Thank 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.

You 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

Much 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..,,

Bless you. Very hard. My mum passed
end of last year. She had Alzheimer’s for quite a while. I cared for her.

You 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

Well done young man. Im sure your mum is very proud of you.x

Such 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 ,

Your 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.

Hiya 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

What 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

You are a wonderful son! God bless you a d your Mum.

You 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

This is my story exactly we are walking in the same shoes .

An 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

Everything 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.

Such a wonderful story. Yes very sad, but truly remarkable. Wishing you the strength to smile and be with your mum as long as possible so she has the best quality of life she can. Losing my mum at the age of 52 was very hard for me and leaving in a different country did not allow me to be with her thru her tough journey.

When I come across you at work, I’m always surprised by your smile and your vitality. In this world of sad faces and egoism it is a Blessing to meet your kind face.
I didn’t know about your family situation and after reading your story I admire you much more. Your mother and your friends are incredibly lucky to have you by their side.

Neil, I have always known you as one of Lee's mad friends. Always laughing and joking around. Lee had told me about your Mum and how well you look after her. It must be so hard for you to see this happening to the person you love the most. Mum's are special people and I am sure you will carry on doing what you are doing to make her life as good as you can. I think you are amazing person, to deal with such an awful illness as you do.

Neil, your story is so touching and humbling to read. You should feel proud of yourself for stepping up and taking care of your lovely mum the best way you can. I wish you all the strength in the world to keep going and supporting her. Take care x

Neil I can hardly read for my tears, My lovely husband is in the same situation, he in a similar situation, Just recently he had to go into full time care, because I have a serious health problem and the medical people insisted that he needs more care round the clock. It breaks my heart and I promised that I would keep him at home, He keeps asking to come home to be with me. He has Vascular Dementure and Alzheimer’s I have looked after him for several years. I feel so sad and guilty. I see every day and I hate leaving.
You are an inspiration to us all Well Done keep strong, you are a wonderful person. Tace care x

Neil I feel your pain as I am in the same place with my husband it is heartbreaking to see our loved ones suffer this awful illness,I still have my husband at home while I can still manage just don’t know how I will cope when he needs more care my heart breaks thinking about it

Your love for one another is phenomenal and rare. Unconditional in every aspect, your dedication, admiration, time, generosity and respect for your Mum give her the will, strength and purpose to continue and keep on living.

You know in your heart what needs to be done to ensure your Mum has 24/7 safety which gives you and her 'peace of mind,' even though it may not be the direction you would like to head towards.

Be kind to yourself and love yourself every single day Neil, a very important aspect to keep you grounded. In saying that, you obviously have your own strategies in helping yourself during the years you have cared for your beautiful Mum.

My admiration for you is beyond words, being on your own without sibling support must be extremely difficult.

My blessings, goodness, prayers and respect I send to you today and for everyday. May you and your Mum continue to laugh, cry, hug, kiss and do all those beautiful things by just being together and for each other, especially under the circumstances. I, 100% understand both your journey.

Kindly, Eddie

Thanks for sharing your story. Your an amazing son for your mum. I was mum's carer to. It's definatly a roller coaster ride. I would do again in a heartbeat

JohnK- I can only sympathise. I looked after my wife who was diagnosed with early onset at the age of 59. I too saw her gradually deteriorate until last year I couldn’t cope with her at home any longer. She is now being cared for in an outstanding care home at significant cost to the family with no support from the NHS. For me the feeling of guilt at not being able to cope with her care at home will not go away and I still harbour thoughts of bringing her home but I fear it is wishful thinking. Alzheimer’s is a devastating disease.

Hi my name is cathrina and I know exactly what you going through, it is so hard being the only one to care for a parent, but you sound to be a very loving and strong person, I have my mother age 91, and in the latter stage of dementia, she was only properly diagnosed last year, and from that she has went downhill so much, as I'm the only member of the family. I have to care for her all the time, have home help coming in when I go to work, every day has being a challenge for me and most of all for her, I stay evety nite, and it is physically and mentally draining, so at the moment mam is on a waiting list for home care in a demintia care unit, I have picked the best place possible where I know my mother will be properly cared for, and give me peace of mind. It is the toughest thing ever dementia, as it hard to look at a parent declining every day, for a person that was so alert and active all her life. Anyways for everyone out there that has to face this challenge, may u have the courage and strength to get through, and never feel guilty, as choices have to be made to ensure safety. Kind regards cathrina

Your story is very moving. Your mum is a very lucky lady to have such a special son. Enjoy her company as long as you can.

Hi Neil
I too can sympathise with what you are going through. My mum was 98 last week, and she has had Alzheimers for the past 4 or 5 years. I am her main carer and have looked after her for this time. I live with her (I am 68 with a caring brother who lives 90 miles away - he supports me by phone calls each day as he cannot come up very often). Mum wasn't too well end of January and she was admitted to hospital on 25th January to one of the local hospitals, then next day moved to another hospital, and on 13th February she was admitted to a nursing hospital. She is hoping to come home tomorrow and I have all sorts of equipment for her in the room as this will now be her bedroom. Whilst in hospital she has become less able to stand and now needs a hoist, plus she has become doubly incontinent which was heartbreaking for me to hear and the hospital thought I knew - she wasn't like this before going into hospital. I will have extra carers in for her, and I hope I can cope with the support of extended family and local friends and carers but its going to be so hard but everyone says I am doing a fantastic job and have done looking after mum for all this time. I hug her and hold her hands every time I see her, as I don't now expect much conversation. If I cannot cope my brother and I have agreed that mum would have to go into residential care, when no doubt she would become more confused (even moving her from one side of the ward to the other in the latter hospital agitated her) Take heart in knowing a lot of people know what you are going through. As people say to me, keep smiling.

This made me cry. I cry every day. In private. My husband was diagnosed 11 years ago. It really is the long goodbye. Every day I want to see him. I go 4 times a week to the nursing home that takes care of him. Always hoping he will smile at me. He was only 65. And very fit apart from his brain. It is a very cruel disease and I really understand the unhappiness of other people that are trying to care for the person they love. I wish you well and that the care home you choose will make you feel so much better about his care. It will not be easy. xxx

I am full of admiration for you and your mum. My mum sadly has this wicked disease, and she moves away from me each time I see her. It truly is a long goodbye that is hard to bear.
She is now in a lovely care home, and we do still have a giggle together, I know that she is safe and well cared for, the staff have got to know her ways and really understand how she likes things. I wish you well in your search.

My mother is 91 and has stage 4 Alzheimer's. She has lived alone for the past 29 years since my dad died. She has cleaner, hairdresser and chiropodist services provided at home, and Age Concern outreach every week. Mother has recently refused to attend a Community Club because she says she does not like being in the company of elderly people. Her unsociable behaviour and a constant non- compliant attitude to all suggestions of assistance are always refused.I do not like the person she has become and struggle to be civil and respectful towards her. Not everyone's story is positive or heartwarming. Mine is one of them.

Thank you for sharing your experience. I am sure it will resonate with many people. Sending my thoughts to you and your Mum.

What 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.

A 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

Well done Neil, Thanks for sharing your story. Take care mate. Love and respect.

We 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.

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