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My has been diagnosed with Alzheimers(11 Posts)
My mother is aged 90 and has been widowed for 3 years. She lives next door to me and we have been very close and my partner and me have done a lot for her. Over the past year she has become very forgetful and it has become very difficult to help her out with her garden, bills, shopping, entertainment and safety as well look after my and my partner's home.
I have been pushing for mum to see her GP which she did in the end and has been to the memory clinic and it looks like she has a diagnosis. Mum has been extremely hostile to me since I have spoken to her GP and she blames me for her getting involved with the doctors. Mum wants just to be left alone and she thinks she is perfectly capable of looking after herself. She is very thin and does not eat much. I used to take her shopping but that got very stressful and mum will not entertain me getting her shopping online. It is a long story that has been going on for about a year. Mum's GP has been excellent and has really pushed for a diagnosis. I have a brother who lives 50 miles away who visits every few months and does what he can. We have a lasting power of attorney but Mum refuses us access to her money to pay for the garden to be maintained or to pay for her food. At the moment Mum walks along a busy road to the local shop to buy milk and bread but there is nothing nutritional in her fridge.
My brother are on different ends of the spectrum where Mum's care is concerned. He is of a liberal nature and is childless. He is a great believer that people should be allowed to do what they want in life. He accepts that Mum has a disease of the brain but says that if Mum does not accept our help then so be it. He believes that we should offer to intervene but if Mum refuses then we should accept that, one day she will have a fall, stroke or heart attack and will end up in hospital. I, on the other think that we should be more forceful because Mum is not in full charge of her faculties and that we should intervene. Mum is terrified of being taken into care and is fiercely hanging on to her independence although she can see her deficits are increasing month by month.
Mum is due to go for a MRI scan but is really reluctant to go and she will get her results of her assessment. We will then know at stage she is at.
I am due to speak to mum's GP this week to be given the diagnosis, even though mum has it clear that she does not want me involved in any way with her medical visits. As I have said she has been very hostile towards me and will not accept there is anything wrong and because I have intefered in her life by going behind her back to her GP. I had no choice because I love her and worry about her very much. It has been a strain because I live next door and I am the first person she goes to when things go wrong but I do my best.
I am retired now and my children are off hand. I am going to be moving abroad next June to Spain to do some voluntary work. I have mentioned this to my brother and he refused point blank to move back where we live as he sees it as a backward step. He is happy for me to move away though. I think we both think Mum will be in care by then.
It is what to do in the meantime. We do have the option of contacting Social Care to get Mum assessed to see if she is a risk to herself but my brother will not condone this because he feels that we 'are ratting on Mum'. He says that if I go down that road he will not support me.
The GP will give me Mum's diagnosis but as I understand it it will be up to Mum to agree to accept outside help which she would have pay for.
There is the option that Mum moves in with me but she has made it clear that she wants to stay where she is and I am moving abroad next year. My brother has not made an offer of help or support in that direction. Both my brother and me agree that we try as long as possible to keep mum where she but this is looking increasingly unlikely if Mum refuses to co-operate with us so we can help her make her life easier. At the moment she struggles up to the shop to get her milk and bread, does her washing (badly) and her bungalow is not very clean.
Has anybody been through this?
Any comments, advice would be much appreciated.
I am doing everything I can to look after mum, as much as she will let me but I am very worried about what will happen to her when I go on holiday in November for 3 weeks. I feel incredibly guilty that I can't do any more than do for her now and worry what will happen when I move abroad next year.
I would talk to SS and see what help could be available. My gran used to go to a wonderful day centre - a minibus picked her up and dropped her home - she would get a good meal, plenty of tea and biscuits and lots of entertainment and activities - hairdresser, aromatherapy, old time dancing/music, sing-alongs etc. After many years of refusing all help it really gave my grandad a break and helped my Gran.
The centre also gave my grandad advice and being in the "system" meant that as grans condition worsened he was aware of other help available - community psychiatric nurse, help with adaptations to the house, respite and care homes available.
I work with the elderly so have some experience with alzheimers although never worked in a full on dementia home. My dh nan also has Alzheimer's and vascular dementia but sounds more advanced than your mums case.
It must be a scary time for all of you. I don't know how much you know about social care services but your mum can be assessed by social services and seen what the best care package would be. Whether she would let you help with her shopping etc, or sometimes domicillary carers can come in at set times of day to help with day to day things, she doesn't necessarily need to go into a home yet if she is deemed safe. Usually with Alzheimer's/dementia a professional will carry out a mental capacity assessment to see if mum is able to make informed choices of her care and how safe she is in her own home. From what you have described though it sounds she is only early stages and the mri should pick that up.
I really think you do need to intervene and help your mum even if she is reluctant. I know care homes may seem awful from the media and it feels like a loss of independence but there is an option of respite care, maybe having a weeks trial in a home to see how she feels? Wish you all the best
My mother fought long and hard to maintain her independence right up until she died. She saw no joy in being in an institution or even having strangers coming into her life and to be honest, I understand this. I can understand your anxiety about her, I really can. But I think you need to be clear that she is an active danger - to herself and / or others - before any compulsory intervention. Our independence is who we are, our space is ours and having others trample into that must feel so intrusive. I would think long and hard before you forcibly dismiss your mother's wishes. She is telling you very clearly what she wants - just because you are worried for her does not give you the right to over ride her clear wishes.
When my mother learnt that her illness was terminal she stopped eating and hastened her death. Dramatic but we eventually understood that she saw no joy in ending her days in a hospital ward and subsequent care institution. It was her way of maintaining her independence to the end. She was in her late 80s and apart from the last 6 months, she lived her life with total independence to the end - as she wanted. I personally would explore every possible option available to enable your Mum to maintain her independence. Easier said than done I know but once our fundamental wishes about who we are and how we live our lives are overridden, there seems nothing left.
Hope that you get some useful support and help. It's difficult I know.
Why do you want her to go for an MRI scan? What purpose will it serve other than forcing your mum to face up to the fact that she has a horrendous and incurable illness? She's 90. She doesn't have many years left. She may have dementia but surely she's allowed some say in how to live her life? If she wants to hang on to some independence then why shouldn't she? Personally in that situation I'd rather die from not eating properly or an accident at home than prolong my life in a care home.
My mum died recently having spent 2 years in a care home with severe dementia. She lived independently until she was 90. I would rather she'd died from an accident at home than have 2 more years of 'life' with severe dementia. She spent the last year bedridden staring vacantly into space, unable to speak or recognise me, her 'life' extended by being so very well cared for.
Thank you for all of your messages of help and support and I have taken on board everything you have said to me.
Perhaps I did make myself clear in my post.
Mum chose to have the MRI scan I did not force her in anyway and I left the decision up to her. Whatever she decided to do I would have supported and understand only too well how frail and frightened she is.
This has been very hard for me and mum to deal with on our own. We have no family or friends around to help me and mum and whatever advice or help I have gained has been from me searching the Internet.
I have supported and fought for her independence from the time that my father passed away. For the past three years it has been me that has been mum's rock.
I certainly do want my mother to go into care and I don't think my post even hinted at that. My brother (who lives miles away) and me want to work with mum to make sure that she is cared for safely as long as possible in her own home.
The problem we are up against is that mum is refusing ALL care, support or help now and is trying (valiantly) to cope on her own.
Just wanted to someone to give me some ideas on how access some outside help for mum, if she'd accept it.
I love my mum very much and just want her to be happy and safe as possible in her own for AS LONG AS POSSIBLE but it has got to the point where she cannot cope on her own. I cannot do any more than I am doing for her because I have my own home tor run.
I was looking for some advice, information or support that was all, not crititism.
Correction, 'I certainly DO NOT want my mum to go into care'
Join the Talking Point forum and ask the same question. You will get some good advice
Have you been in touch with your local Age UK? They are very helpful people and will be able to visit or talk and discuss local facilities such as daycare centres. They will also ensure your mum has all the benefits she is entitled to and help with any application forms.
Accepting carers into her home is a real problem. My friend was recently in your position but 500 miles away which was a nightmare. She did eventually get him to accept carers visits after a SS assessment. He tolerate tied the visits but wouldn't accept showers or allow them upstairs for a very long time. She was constantly fire fighting really. As soon as one issue was tackled another one appeared.
At the age of 90 it's possible that her disease progress will be quite slow. If you are currently doing a great deal you will need to work with her and outside agencies to gradually introduce other people into her life so it becomes familiar and her new normal.
If you are going away in November would your brother be able to stay? If not it will be very challenging and she could be at risk if an established routine of outside care hasn't been set up well in advance. She will get used to new people helping but it takes time.
Maybe she will be able to stay at home or maybe not. Having a good GP on board is really helpful as they will be able to signpost you to good services. It's very frustrating your DM won't allow you to help her without suspicion but it's the illness.
I hope you can get good support for both her and yourself. There is no one fix, it's a progressive situation so only short term plans are possible really although looking at care homes might be sensible so you don't end up in an emergency panic. One offering initial respite might be a solution for your holidays. Don't expect any thanks, though. Sadly you have had the best of your DM and it's a long hard road so you must look after yourself.
Talk to Age UK, DM's doctor, and any other resources that might be available. Find out what you can and should do to protect your parent, and give yourself a break. Your DM doesn't want to be infantilised so things will be beyond your control.
It is a tough journey and it will help if you and DB can agree on the approach to take but I appreciate DM will have her own ideas.
One of my grandparents adored driving and it was very difficult persuading him he was no longer a safe, competent driver. My parents were dreading the day he would cause a crash perhaps with fatal consequences for someone else.
My DGM once widowed spent recklessly and frivolously. She told the family that it was her money and she could spend it as she chose. Yes it was her money, but Grandad meant it to help provide her with a comfortable living for the rest of her life.
I don't know whether you're already aware of this, but as a person living alone with an Alzheimer's diagnosis, your mother no longer has to pay Council Tax (my Dad's in the same position, which is how I know). I struggled with getting Dad to accept carers when I'm not available, but 'sold' the idea to him on the premise that it would make my life easier not to have to worry about him, and the savings from the Council Tax more or less covered the cost of the carer (we use a private agency, care costs just under £20 an hour). It worked, and now he has a carer in for an hour a day when I'm not there - they just make sure he's taking his medication, cook him a hot meal, check that all is OK in the flat, put a load of washing on if it's needed etc. I do Dad's shopping online for him, so he doesn't have to worry about going anywhere. Just one hour of care a day has made all the difference, and I'm hoping that we can continue to support Dad's desire to stay in his own home (he's 89).
It's not all doom and gloom, btw - Dad and I still manage to have a few laughs, and he enjoys watching films on the telly (over and over!), plus reminiscing about Dad's old friends, my Mum, other relatives and so on. I'm storing up memories of my own for when he's no longer around, and I think of it as a privilege to be able to look after him - even if there are times when I find him - ahem - rather challenging
I really hope you manage to get your Mum to accept some care - best of luck!
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