Les2211, you've obviously been coping for awhile on your own. The fact that you recognise that your Mum is no longer the Mum you knew, is a huge emotional step forward. And, that you want the best for her, and are asking advice from this Forum is to your credit as a kind and caring human being although under a lot of stress that sadly, having a Mum will Alzheimer's brings.
It's so hard to deal with someone that was once your Mum, a bright and brilliant person in their own right, but who because of a brain disease has almost become someone you don't recognise.
You need help for yourself to support your Mum. If you have no other family support, it's hard to do this alone. You need to reach-out to whatever support is out there and talk to us in detail on this forum and we'll try and help you even if all we can do is share our experiences.
Reach out to Admiral Nurses. It was only very late in my journey with Mum and AZ that I learnt that they are there for us to reach-out to. Google it, and you'll hopefully be able to hook up with someone who has the knowledge of AZ that can help you.
You haven't shared much background about your Mum or your sitaution with us, has she had a memory test, are you supporting her at home on your own, do you have carers, etc? Are you working and trying to hold down a job? Please feel free to share with us because we've all been down the journey you are going through and we'll help you.
I coped for over 8 years with Mum, She's still alive now, 6 years later, and doing well, but is now in a care home as it became impossible to hold down a job, travel over 2 hours where I live to support her.
It seems that having been on this forum for years on and off there is a pattern to all of this for all of us. You need to understand (but I think you do have an understanding) of where you are at a given point.
1) You realise that your Mum/Dad/loved one is exhibiting weird behaviour and more stressed out than normal and unable to cope with the every day stresses. Maybe they say that their clothes are "scratching" them, or they've can't cope with seams in their toes and turn their socks inside out, or are cutting up the seams in their pants because they say it hurts them. That was a big red warning flat for me and I did even was getting clothes personally made with very soft fabrics by local clothes makers until one of them said "You're Mum's problem isn't physical, it's mental, her brain isn't functioning". Or perhaps they are saying stuff about their home, like "Don't use the bathroom! The pipes aren't working!".
2) You investigate and realise they aren't dealing with their finances anymore.
3) You get more phone calls than normal initially during the day, and increasingly at night.
4) You realise they are really stressed, but don't get what is stressing them out as you try your best to remove the stresses they feel.
5) You realise that they aren't dealing with day-to-day activities like making making food.
6) You realise that they aren't actually able to wash themselves as either they can't get in the bath on their own, or don't have an appropriate shower, and if there is an appropriate show you've installed, they are confused about how to use it even though they were using it a few months before.
7) They keep telling you that things are wrong with their body and they have a serious illness. The GP says there is nothing wrong, but your loved one insists, and you pay for private examinations. And you pay loads of money only to be told, there is nothing wrong with them.
8) You've done all you can to get them diagnosed, but keep getting called late at night and have to take them to A&E waiting for hours, because they say they are in severe pain only to discover that they have wind. And that's beause their brain is is so mashed up that they can't understand how to read the issues in their body they've done since a child. It all seems new to them as if they've never experienced before because their brains are no longer connecting properly but you don't know this at the time.
9) You realise they don't cook anymore, so you bring in Wiltshire Farm foods, you've already taught them about the microwaive some time ago, but now you leave specific instructions, leave cold food in containers labelled up, you leave food that you've prepared and realise that they don't undertsand and are not eating other than the box of sweets you left thinking it was a treat but now is what they only eat pushing up their sugar and stress levels.
10) You give up work for a period, go in and do their food for them, and you stay with them, and then experience weird behaviour mid-afternoon where they get angry with you, don't know who you are and in my case start calling you "Mum". They don't know how to get ready for bed, can't dress themselves, and you try and take-up the slack, and make sure that you have Mum/Dad ready for bed in their night clothes, teeth brushed, before you leave them. And you think they are safe because they've suddenly changed back into Mum/Dad and seem normal.
11) You come in next day and realise your lovely Mum/Dad hasn't made it to the loo, and has the carpet is soaked with urine. You deal with that, as a one-off but it becomes a normal thing even though they deny it ever happened and can't explain any of it to you and because you're not their overnight you don't understand what has happened although you know this is now really wrong.
12) The neighbours start saying to you stuff about your Mum/Dad seems to be distressed, and although they seem fine with your Mum/Dad during the day, they suggest that they are worried because they go out at at night, just outside their flat, but because they know something is up, they alert you.
13) Your Mum/Dad despite you providing all the care you do and ensure all their food, suddenly decides to go to the local shops for something, but has no money. The lovely kind public, pay for your loved ones bill when they get to check-out but the local shop know there's an issue but not who to contact but ensure your loved one gets home.
14) You find sutff in their fridge that you never bought them and wonder how it got there. So you go to the local shops and discover they know your loved one, and that it's always paid for by other people and that they are aware and sensitive that the person has dementia so don't make a drama. You give them your details, photo and say, tell me when this happens and I'll pay.
15) You realise your loved one isn't safe and you can't support them 24/7 so you get carers in. In my case as social services said Mum wasn't under their care because she had private money, I researched and interviewed the care firm recommended by her GP.
16) The private carers refused to care for Mum anymore because they said that she obviously has dementia and needs to be in a care home. I asked if I paid them to keep her at home, they refused saying that Dementia needs specialised care and they couldn't provide that.
I had promised Mum I would always keep her at home but even I realised, with this disease all bets are off. Mum when she was looking after my Grandad, said "If this happens to me, put me in a nice home and leave me there, and then get on with your life".
I visited over 48 care homes in her area, but I shouldn't have bothered. There were only 2 care homes that will take people with dementia. I wish I'd been a bit better in my google research, it would have saved me so many weeks.
I never expected that a brilliant, intelligent, kind, thoughtful woman who had worked all her life and brought-up 5 children (all but 1 of which have nothing to do with her) would ever be reduced to a person who doesn't know me, keeps calling me "Mum" ask now even when I see her and take her out of her room says "where do I go now?" - and I have to say "this way Mum ... follow me ...".
It's heart breaking, it hurts, it's emotionally and physically draining, and if you are an LPA for such a person, it comes with all sorts of things you are responsible for etc that you never anticipated, and yes, you have to keep records of every receipt and everything you've done in case you are called to account.
It's not easy. And I doubt that any of our loved ones expected this to happen to them. My Mum certainly didn't, but even thought she said when she was able to decide, that I should leave her, I just can't do that.
My brother and I look at this way, which perhaps is wrong, we look after and care for a lovely old lady in her later years, who doesn't know us, gets angry with us, but we do our best for her because whilst she doesn't know us, and we don't really know her, we still know that she is part of us and she in some way knows that we are part of her.
We are ready for what will happen next as like many of you, you think you are middle stage dementia, but it could be many years away before the brain gives up to the point where someone is later stage where they can't leave their room and sleep all the time. We see this in Mum's care home, and sometimes people live for 8 months and more in a state of being bedridden and unable to function. I so hope that Mum will just die of a heart attack but she's physically strong so that is unlikely.
So little is really known about this disease, what has caused it, and the government has done so little understand and support people like my Mum, as policitally, the government got rid of social care and privatised it.
Anyone reading this post, who is in this situation, please make sure you get support. It's so hard to deal with this not just the emotional side but the legal and other issues too and you MUST get support!
But also always remember - your loved one never expected that this would happen to you ... and that you would have to do so much for them ... and give up your life to do this.
They will never be able to thank you -- but just remind yourself of the person they were and they would say thank you. I know my Mum - and we had our fall-outs but I know always that if she realised what I've done for her and her family, she and my Dad would always have said thank you.
I wish you all the very best
