Dementia Support Line
Difficulty with deciding to move Mum with dementia into a care home
Neil shared his story about caring for his mum, Yvonne, at home. Neil updates us on how they're both doing, shares his initial feelings of reluctance to move her into residential care, and some messages of support for other carers of people with dementia.
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.
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!
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.
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.
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Wendy
saysMy 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.
Jean Campbell
saysMy 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
Sophie
saysHello 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!
Terri Chapman
saysI 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
Mrs Linda Llewellyn
saysI 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!,
Happyb
saysI'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.
Sarah savage
saysNeil , 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.
CJ
saysNeil, 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
Sandra Irwin
saysMy 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
Steve Miller
saysIts 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.
Rachael Kemp
saysOh 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
Janet mountain
saysMy sentiments exactly. I have been there and it’s heartbreaking, it makes me cry thinking about my mum who passed away in April 2018
Michael Reilly
saysVery sad well done Neil