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Neil's story (part two): 'I fought to keep Mum at home for as long as I could'

Five months ago, we heard from Neil who shared his story about caring for his mum, Yvonne. Here, Neil updates us on how they're both doing as Yvonne's condition progresses.

The hardest and most heart-breaking decision of my life came in June 2019. I finally had to give into the battle of keeping Mum at home. Alzheimer’s won.

Mum is now in 24-hour care in a nursing home. I fought to keep Mum at home for as long as I could, ever since our journey started back in 2013.

After looking after Mum for so long, it’s going to take me a long time to adjust to not being able to care for Mum like I used to. Both Mum and I are adjusting to a new way of living.

The pain of Mum not recognising me when I go to visit her is unbearable, but I know I must be brave and keep on going. I will have Mum's hand until the very end.

These days it is extremely rare to see Mum smile, which is horrible as she has the most beautiful smile. When I do get a smile, I cherish it.

Two pictures of Yvonne smiling

The long goodbye will never get easier, but I know Mum is safe and being looked after by a great team of nurses and carers in her new home.

For any families living with this unforgiving illness, be strong. 

The way I try to stay strong is living with the mindset that there is always someone worse off in life and we all have our struggles.

Through our whole journey living with Alzheimer's, Mum and I have never said, 'Why us?'. We have just tackled each hurdle together and carried on!

Take each day as it comes. Life is precious!

Yvonne and Neil together

Always try to remember that however dark times may be, there is always hope. No one ever wants to see a loved one suffer, but with Alzheimer's, you really have to keep strong and support them in whatever way you can. Everyone's journey is different.

Of course, these points are all easier said than done given the roller coaster ride of living with or caring for a loved one with Alzheimer's.

Make sure you are fully aware of all the support that's out there. Local authorities and the Alzheimer's Society will guide you. You can't do it alone!

Having a great friendship group around you is critical. Surround yourself with people who care for you.

Try to have a break/holiday whenever you can. This will give you the much needed down-time you need so you can come back refreshed ready to care for and support your loved one.

Yvonne walking down a corridor

During this whole experience, people have advised me to speak to a professional about my mental health. I never have as I am lucky my mental state has been good throughout, although I have had some very dark days.

I would certainly recommend anyone else going through this is to make sure they talk to someone to look after their mental state.

It's always good to talk and you are never alone!

If you're caring for someone with dementia, we can help. Call our helpline, or visit Dementia Talking Point to chat with other people in your situation.

National Dementia Helpline
Our helpline advisers are here for you.
Dementia Talking Point
Visit our online community to get advice, share experiences, connect.
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28 comments

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Very sad well done Neil

Oh Neil, this really made me want to cry. It’s so upsetting to hear. I think it’s anazing what you have done for your mum and I’m sure in her own way she is very proud of you.
Sending you lots of hugs.
Rach x x

My sentiments exactly. I have been there and it’s heartbreaking, it makes me cry thinking about my mum who passed away in April 2018

Its difficult to find suitable words in reply to your story. Except to say thank you. I am in a similar situation, with my mum in full time care.
My inner feeling is to look after her, like she did when l was growing up, and was ill. But the excellent care she gets in the home , is very good. So l guess that is where she needs to be.
I wish you well sir with your mum.

My worst day was April 8th 2019 taking my 92 year old Mam into 24 hour care, will never get over the guilt but had to be done even though she fought against it as she was in serious danger living at home. Unfortunately she is at end of life now which is so tough but I am at ease now knowing she is being looked after round the clock

Neil, totally understand how you are feeling after looking after my mum who has vascular dementia we had to move her into a care home 2 years ago. I now sleep at night knowing she is safe and being looked after 24hrs a day. Like your situation my mum doesn’t know who I am but there are always those moments that happen when you know deep down she does. The other day mum for no reason held my face in her hands and gave me a kiss, the 1st time in 4 years I cannot explain how much joy that gave me, I left the care home on a real high and with happy tears in my eyes. Stay strong x

Neil , i recognise your mum as my dad has just gone into the same care home. He also has alzheimer's it is so cruel. My dad is just 72 and have watched him go down so quickly. Our worst day was fri 3rd of May when my dad was sectioned for his illness. He was so lost and crying which is the hardest thing every, i can still hear him now. He is now settled and seems happy, i am lucky he still recognize me and has a smile when he see me. His problem is he has lost his speech and can only say a few words. I am lucky to have the support of my wonderful husband. The last three months have been so hard, but i know he is safe and happy. The care home they are in is lovely and the staff have been wonderful.

I'm going through the situation with my mum right now as she has just been diagnose with Alzheimer. I often see you and want to talk to you. I'm finding it so hard and dread the future of what will happen as my mum dead against going in a home but her safety is becoming a risk. Well done Neil for staying strong and being there for your mum.

I totally understand what you were going through Neil.My dad had Alzheimer’s for about 5 years and he ended up in a local cottage hospital for 3 and a half years where he passed away.
Then after about a year my mum was diagnosed with dementia through loneliness!,
Gradually she went down hill,forgetting even how to make a cup of tea!
She attended the day centre 3 times a week and eventually had around 4 carers a day.But after continually leaving the house,I had no option but to put her in a care home on March 1st 2019.
The home is great and I get on well with the carers,which helps.
I’m happy that she recognised me when I visit her.
As she has a house,we do have to pay for all her care!,

I recognise the guilt of putting your mother in to full time care . My mother has Alzheimer’s and has been in care for 5 years. She no longer recognises me which is really hard but I know she is safe and cared for. Stay strong and spend time with her when you can . After all we only ever have one mum x

My husband is 73, his memory has been going downhill for about 5 years, he went to the memory clinic at that time. But recently he went again and after an MRI scan, which still only showed age related shrinkage, and tests within the clinic, he has been told he has mild dementia. At the time I was positive because it was mild, and so was he, but on closer reading I realise this is just the start, 2 years for each stage, and I’m scared stiff. We own our own house, jointly and don’t have much in the way of savings, under the threshold I believe. His pension is good, a private one of approx £500, and a state one of approx £800. Mine is terrible only around £300 pcm, as I stopped work to bring our girls up, I didn’t realise I should have carried on paying a stamp. I’m terrified of his care costs, I realise they can’t make me sell up as it’s my home, but without his pensions I wouldn’t be able to pay the bills, he’s not at a bad stage yet, but as he takes 15 pills a day for his heart, and other things, I have to check he’s taking them as he does forget or gets confused, I cook for him, and keep him looking good. He’s still driving, but I’m applying for an attendance allowance. I’m scared of the future in front of us, especially finance, any advice would be welcome.

My husband is now in full time Nursing Home after I have spent seven years caring for him. Please make sure you get Power of Attorney while he is still able to sign the papers, I almost left it too late as I didn't want to be bothered but I realize now it was the best thing to do. Like you I didn't continue to pay stamps when I left work to bring up the family, we own our own home too and although we haven't a lot of savings I could not get attendance allowance for the hours of care I devoted. His pensions pay for his care, and I have to pay a top up fee also, I manage as my council tax is reduced, my electricity and gas bill are less, we only have one car, so I save on different things and live very comfortably. I don't let the loneliness get to me as I joined various groups and built a new group of friends. Your house cannot be sold as long as you live if you can't afford the care charges the council put a charge on your house, which unfortunately has interest added and the only way they get any money is if you decided to move. So pick yourself up, cheer up and keep on fighting because the road ahead gets tougher. Good Luck and God Bless

Hello Wendy, my sister and I care for our dad who is living with Altzheimers - we lost our mum 1.5 years ago. Your fears prompted me to write. Diagnosis is a frightening time. Don't panic! But you must both sort out the legal stuff now - do not delay. I recommend asking a trusted solicitor to help. Make sure you both set up power of attorney ( both financial and health) , sort out your wills including wishes and other papers related to ownership of the house. Pensions can be signed over to family in some cases - it doesn't hurt to check and make sure the right paperwork is filled in. You can and should protect your husband and yourself. This will give you both some peace of mind. If it helps, ask others you trust (doctor? Local altzheimers society?) if they know about local support and good care homes, so you have some ideas. A care home can explain how the finances generally work. I'm saying do this now, so that you can live each day from now on finding happiness in what you still have rather than fearing what you may lose. There is so much time to enjoy and there are many things you can do to keep both your minds healthier. The Altzheimers Society and Altzheimers UK have lots of good information and reading. We now use the contented Dementia method, which works for dad. And remember, you are not alone!

O,h my goodness Neil, what a saint you are. Most of us oldies worry about the what ifs, and who will look after us, it’s such a worry. We should have more people like you who have bee 100% dedicated to your Mum. My sister looked after our Mother for more than several years, it definitely broke her physically and nearly mentally. Now she has been diagnosed with Alzheimer’s how sad is that. My heart brakes for her.

Wendy I have just put my husband in a care home it broke my heart as I said I would always look after him after 47 years married
I have a financial review next week and am dreading it as I am in a similar position to you . Attendance allowance will go as will other parts of his pension . I have an amazing family but why should they support me ? Our house is the main asset now and I will keep it as we have split the ownership ., my husband is 71 years old
Good luck for your future

Dear all. I had the same expericne myself 3 years ago, actaually my Mum died last February. My own feedback is I did the right thing!! no doubt! in the place she lived it was easier to feed her on time, to bath her on time, etc. I know it is a hard thing to do, but I'm pretty sure even in exico is the best thing to do for them. Hugs to every relative and carer

Hi Neil, you did all you could.
I'm probably going to be in a similar situation in the future.
My wife who is only 60 has been diagnosed with Alzheimer's, her memory started to show major problems 3 years ago and has gone steady downhill since then.
We still have good days but they are becoming fewer and further apart, I know that at some point in the future I'm not going to be able to care for her 24/7 so a care home maybe the only answer.
John

Neil, I feel your pain, this journey is so tough, no two days are the same. Lost Mum sadly this April and not a day goes by where I don't miss her, so cherish this precious time. xx

My wife & I
Got told in June she as the word .I don't like it so it's the word. In the house.
I try to keep strong but some day's I find it hard .I've not been any chat group's yet.
I want to keep her with as long as can .it's horrible .thing to have each day is hard .but I love her more than ever .I fine it hard to write it down on page's like this .

Hello Neil! Breathe and take one moment at a time! Keep Pushing and take out some time for yourself! I loss my mom two years ago to Dementia. The hardest thing for me was her not being able to recognize her one and only child. That was me!! Believe me, I understand your heartfelt pain. Dementia affects each person differently. Therefore, I was able to keep my mom in her home that she loved so dearly. I made the sacrifice for her by leaving my home to be there for her . My mom was a great mom and was always there for me one way or another. I appreciate my kids and husband support and their parts for making her remaining days peaceful and loving. She didn’t recognized us but I believe within her heart she did. Determination is the Key! Continue to pray for strength!!

Neil. My heart goes out to you, I am in the situation with my wife being diagnosed with Alzheimer's 4 years ago over the last 18 months she has declined so very much. I have someone to sit with her while I have some time to myself and both her and her employer are advising that I should consider putting her into care but I can't face doing that, I made a promise 51 yrs ago that we would care for each other in sickness and in health and I would consider that I have broken that promise, so I really understand and you have been absolutely brilliant in your care for your mother, I only hope that ZI can be as strong as you when I cane no longer cope. Enjoy you future.

My wife has Vascular Dementia and I was determined to look after her at home for as long as I could, using a tracking device and carers. Unfortunately she wasn’t able to cooperate and refused help with her personal hygiene and there was a lot of work washing clothes and bed clothes. There were also violent episodes resulting in minor injuries to myself and falls needing paramedics to check my wife out. Before the use of the tracking device they were three occasions when I called 999 to find her. I cannot praise the police highly enough for their prompt response, compassion and empathy in locating and bringing her home. I eventually realised I was failing her because she wasn’t getting the care she needed and
deserved. Our local Alzheimers Navigator was always there when we needed calm thoughtful advice and I couldn’t have coped without her. I was also grateful to the NHS Intermediate Care and the Coventry Carers Trust for providing lovely carers who couldn’t have done more to try and look after my wife. Coventry Social Services were heavily involved in providing respite care when we needed it. My wife spent two weeks respite in a lovely Dementia Care Home, not the most local, but one that completely satisfied me with the care provided by dedicated staff with all the facilities and activities that one could wish for. I spent several hours there each day and was delighted and content with the place. My wife also was very happy there. Soon after she came home, whilst she was lucid, I did ask which home she preferred and after a short pause, she said the other one. Sad for me, but I could understand why; there’s always something going on to catch her interest, if it’s not the organised activities, the visits by pat dogs, miniature horses, exotic creatures, entertainers, great meals etc then it’s the frequent attention of the all the care workers giving them love and fuss. Soon after my wife came home Social Services advised that she needed to go into permanent care and I agreed. We were initially offered a place in another home but I detailed all the reasons why I preferred the original respite home, our Social Worker agreed with me and very quickly the move was arranged. My wife is very happy there, I visit most days over lunch time for about 3 hours. I look forward to the visit and enjoy my time. The staff are very kind to me and it takes my mind off my serious health issues.
I realise now that I wasn’t doing my wife any favours in struggling so long in trying to look after her at home. Every case is different and it’s difficult to judge the right time but Dementia Professionals will advise and one Care Home Manager did say that the person can deteriorate quicker if placed in a Care Home too early.

Beautiful.
Thank you. ✌🏼️

Hi Neil, well done for what your doing for your mun. My mum is now 92 with Alzhiemers and Vascular Dementia, I am her main Carer and myself my husband and young daughter have been Caring for her at home since 2013 as well as we all live together. It is very hard and certainly the hardest thing I have ever had to do. I have 2 Carers who help me an hour in the morning and again at night independently but we have not had a holiday since 2014. We can't go down the Home route as we are self funding and I've been back home for 16 years now and it's mum's home. A Thousand pounds a week we don't have and she's now entered the final stage. I have been down every road possible for any help but unless we pay we get nothing at all. Ask me any question related to Alzhiemers and I can answer mostly All as we've been through everyone available . As our Doctor says we are inbetween a rock and a hard place. We can't even get CHC as she doesn't have any underlying health issues. This disease needs a lot more publicity and help through the Government. If you have Cancer you get every help available but Dementia, forget it. My dad died at home with Cancer so we know. This is a long journey to which, we know not when it will end.

So many heart breaking stories. Maybe to bring a smile to the loved one’s face , try singing with them, some of the songs they would have known and loved from their special hay days? Worth a try? Thinking of you all with love , Charlotte

Neil...u r amazing to have taken such wonderful care of ur dear mum..
Please try to focus on how much u have done for her, with love and consideration for her well being...don't dwell on what u can't do, feel proud at what u have done.
Sending karma and kindness to u, Neil..u so deserve it..

Hello everybody! My name is Paula. As a profesional carer I came across many different cases of dementia. None of them worse than others. Personally I think we all lack attention and love, nowadays People are too busy to take time off for a cuppa or simply go for a walk in the Park. A friend of mine, has been looking after an alzheimer victim for over 9 years now. Who was about to get into a nursing home at that time. She's still happy and smiling .Her dementia seems to be stable, even though she does forget things sometimes. Most People are deeply depressed, but that condition nobody pays attention to it. My advice is please get help and allow time for that walk or cuppa with a friend and always try to put a smile on the face of other People, might need it more than you. Must say that I am very proud of myself for having chosen the job of carer. One of the most rewarding ones. Hugs to you all!

My mother is 91 and has stage 4 Alzheimers. She has lived alone since the death of my dad 29 years ago. At the moment, she has a cleaner, hairdresser and chiropodist whose services she accepts. Mother has had Home Help 18 months ago but her stubborn insistence that she could cope meant that they were superfluous to her needs. Mother's ability to look after herself is declining rapidly. We have found mouldy food left in her microwave and her appetite is frugal. She refuses to use a walking stick, wear her glasses and both hearing aids when at home. Mother is in a comfort zone in her bungalow and has no desire to socialise except with family. Putting her in a Home is our last option because she would not function as expected. She receives daily help from my sister who lives nearby but her needs are increasing and mother is in denial get again. Basically, we are, as a family, waiting for some domestic crisis to occur before we consider this move.

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