I need to vent!

[woodblock]

I moved back in with my mum a year ago. My dad died a few years ago.

Mum has been assessed as having late onset Alzheimer's. She is extremely forgetful and as a result of that can be vulnerable (ie - will try to pay people twice, asked me where the turkey was on New Year's Day having forgot Xmas had been and gone, etc).

I work FT (mostly WFH thankfully) but do all of her life admin and pay for all the food. I live rent and bill free in her house. I drive her everywhere to appointments too.

I go through a cycle of feeling extremely irritated by her behaviour then feeling guilty by my irritation.

What I am struggling with is her lack of respecting boundaries. She keeps interfering with whatever I am trying to do be it washing or cooking. Whilst I recognise that she thinks she is being helpful, she just won't or can't listen to me when I tell her to let me do whatever needs to be done alone. Today, she got to the washing machine before I was able to and put everything in the tumble dryer whereas I hang dry certain items so they don't shrink.

I know it sounds petty but I feel suffocated by her and just need to vent online!

Anyone else with experience of coping with Alzheimer's?

Hi OP, I know how tough it can be to provide care and support to someone with dementia. Have you had a look on the Alzheimer’s Society website or the website for Dementia UK? They have a wealth of useful information and tips available. Through Dementia UK you can also access Admiral Nurses who are dementia specialist nurses.

I've had a brief look. I was hoping to come across a local support group but didn't see any.

Living with someone with Alzheimers is so so hard. I've been there. And the worst thing is, the only way is down. The person's behaviour deteriorates and it becomes so very hard to deal with.

We were "fortunate" in that MIL didn't live very long. I'm not sure we could have coped for years if she had.

Yes well she has dementia so obviously she can't help any of what she is doing ! Not sure why you are getting angry with her.

I listen to nurses and councillors telling you how to speak to a dementia sufferers and I wonder how many of them have actually lived with someone rather than just worked with someone. I fully get your frustration, op. You know they can't help it but it doesn't make it any easier. I live with my mum half the week so coming home for a few days does give me some calming down time. I don't know how I'd cope full time. You do have to look after yourself, though, otherwise you'll be destroyed and that will be dreadful for you both. Can you get carers to come in to give you a break? Or take her to a day club somewhere to be with other people and give you a day off?

I've contacted Alzheimers society in the past and they were very nice but useless.

@lollipoprainbow

Yes well she has dementia so obviously she can't help any of what she is doing ! Not sure why you are getting angry with her.

Because the OP is in an exhausting and horrendous situation. No it isn't her mum's fault but equally the OP is allowed to be frustrated. Better to come on here to vent and get support rather than spite.

OP, it is horrible and shit. Are you getting any support because you can't effective care for your mum without some support. MIL has dementia, she has gotten so much worse in lockdowns. When we saw her on boxing day she accused DH of hiding presents and now has no recollection of us having been to visit. We live 2 hours away and most care falls to SIL, to whom we are very grateful and help where we can.

You do need some additional support, because you cant do this alone. We pay for a cleaner for both MIL and SIL as well as keeping a stock of easy healthy meals for them. We are also trying to find alternative accommodation for MIL because her house is very run down and hasn't had money spent on it since the 80s. Hopefully this will happen in the next year and relieve the pressure more on SIL.

Well that's a very helpful post @lollipoprainbow. The OP has not said she is getting angry with her mum. She just needs somewhere to let out her frustration with the situation. My mum has Alzheimer's and drives me round the bend. It's really, really shit. I feel I should be allowed to say that n here - I don't say it to her. Maybe you need to try a bit of empathy.

Crossposted there!

@DontTellThemYourNamePike I have empathy my mum is in a home with advanced dementia.

Thanks for your kind words.

I'm going to ignore lollipop's unhelpful comment.

Mum doesn't recognise she has Alzheimer's and just thinks she is a bit forgetful. She won't accept that she needs carers yet but it is something I will look into down the line.

Mum's behaviour now is a magnification of her pre-Alzheimer's behaviour. She isn't a horrible person but she has always played the martyr/victim role which is frustrating. It's so hard not having my own house and being told ' my house my rules' when the reality is she can't cope on her own.

Just venting really...

@lollipoprainbow I'm sorry about your mum. I know how tough it is. But surely then you must realise what a horrible illness it is and that carers need support too. And if that means coming on Mumsnet for a bit of emotional release, then so be it.

@woodblock My mum doesn't realise she has Alzheimer's, even though she's quite a bit further on than yours. She feels sorry for people with Alzheimer's and says it must be awful for them I know what you mean about the magnification of previous behaviour. My mum is a good person, but certain character traits are much more to the fore now, particularly the negative ones. The carers come in every day to try and get her to wash etc, but she firmly believes she's already washed and refuses to let them help. Apparently refusing care is quite common in people with dementia.

The fact you know how tough the OP has it makes your comment worse @lollipoprainbow. You need to apologise.

The magnification of faults (for want of a better term) is so hard. As is the reluctance to accept and the inability to remember the diagnosis also makes things impossible. Please do look into real life support. If you need to talk 1-1 please feel free to send a message

Can you find her something to occupy her, that enables her to feel useful but isn't actually a hinderance? eg folding clothes, dusting? Would she go to a day centre to give you a bit of respite? You could sell it to her as a social/activity club maybe?

My mum does know she has dementia, except when she doesn't! She thinks she goes to the shops every week so can manage without me and my sister. I reality she hasn't been to a shop since lockdown started unless one of us has taken her.

You need to get PofA if you don't have it already. The longer you leave it, the more paranoid she'll become and she'll believe that you're trying to rip her off and steal her money.

Don't leave the carers until you need them. My best advice would be always try to be ahead of the game. The better you prepare, the better decisions you make, the less stressful it is. Even if you get a carer to come a couple of lunchtimes a week for half an hour to give her lunch and do a quick clean of something, it would give you a break. If she is able to be left, they could leave her a sandwich and cake for her evening meal and you could have the day off or if you work, to go out for a meal with friends in the evening. It gets her used to having people into the house so hopefully it won't be as a big a shock when you need them to help with personal care. Having said that, mum hates having carers but is too polite yo tell them to get lost...soo far. But she needs them; and we need them for our mental health!

We have indoor cameras so we can check on her during the day that she's safe and mobile.

It's easy to say they just don't understand and so be tolerant, it's oh so different when you're faced with the same behaviour all day every day. I've found I give my mum a little task to do and she soon gives up and goes back to the telly. But at least we don't have an argument. If I say, no don't do it, she's more likely to take offence and argue.

I love my mum but she's always had a strong personality. She's actually softened now and I think this is what she was like as a child. She always thinks she's right no matter how much I can prove she's wrong. (All the books say don't argue...but 🤬 )

Can you identify specific things that frustrated.. I.e the washing machine.... does it have a child lock you could put on so she can't open it.

I do have POA.

And yes, it is a good idea to give her a task to do too. I'll have to think of some.

A recent example - we were expecting a delivery, got notification saying delivery had taken place. Mum denied accepting a delivery. We found the item in the recycle bin thankfully.

Some things I can laugh off but it is exhausting trying to pre-empt what she will do next. And she's only in the early stages.

It just feels like having to look after a child. I love my mum but my god it is difficult and as a previous poster said it will only get worse.

It's hellish and no one knows what it like to live with someone with Alzheimer's. I've been there and I'm always described as a patient calm easy going person but I'd be tearing my hair out and gnashing my teeth with my mum.

My mum is quite far gone now and in a nursing home which makes it easier for us - although covid has meant we've not always been able to visit her.

Why not see if there's any day centres or clubs your mum can go to. It will give you some respite and her too. My mum went to one organised by Age Concern and another run by social service. There's talks and games and various activities and a meal and drinks, at the same time the organisers keep an eye on them. My mum would get picked up and dropped off by them.

It's not for everyone, my mum has always helped others not herself, so I had to persuade my mum that she was helping people who were lonely and needed friends.to get her to go to them. She loved it and it was a real lifeline to us all.

OP I literally could have written every single word of your posts as I am going through exactly the same thing with my mum (albeit we don’t actually have a diagnosis).
It is absolutely exhausting on every level and so emotionally painful as well n

It's awful. However, I found the earlier stages of dementia worse for me to deal with. It felt like being gaslighted in many ways, because very often mum was her normal old self and then would throw some curve balls that knocked me for six. She used to love shopping, but for about a year wanted to buy the same item of clothing every single time we went out together. It was always a T-shirt for my brother. He had dozens and dozens of new t shirts in drawers. She then thought I was two people. Once a week I was her daughter, the next time I was a random carer. When I was her daughter she used to slag off the carer (also me) to me. And be quite viscous about this carer too! Fat she was... stringy hair...and a terrible driver...

But now she's got advanced dementia. She's bed bound and barely eating or drinking. She doesn't know where she is or who anyone is really. Just wants to go and be with her mum and dad. And all the frustration and hurt has left me because she's a dear old lady again. And I'm praying every night that it will be her time to go.

Thanks for all the feedback - it's reassuring to hear.

I think part of the reason why I struggle is that she appears to come across as 'normal' at times but actually masks things quite well.

Other things I have noticed - everytime I speak, she says pardon - I think it is to buy time to process what has been said. Also, she says everything is tasteless which I understand is quite common.

@woodblock

I do have POA.

And yes, it is a good idea to give her a task to do too. I'll have to think of some.

A recent example - we were expecting a delivery, got notification saying delivery had taken place. Mum denied accepting a delivery. We found the item in the recycle bin thankfully.

Some things I can laugh off but it is exhausting trying to pre-empt what she will do next. And she's only in the early stages.

It just feels like having to look after a child. I love my mum but my god it is difficult and as a previous poster said it will only get worse.

Had she taken the delivery and then put it in the recycling or had the delivery placed it in there and popped a card through the door which she disposed of?

If it's the second, could you get a box that the mail drops in so she can't get it?

@Muchmorethan - mum took the delivery and threw the item into the recycling bin.

Could you get bin locks?

@woodblock

Thanks for all the feedback - it's reassuring to hear.

I think part of the reason why I struggle is that she appears to come across as 'normal' at times but actually masks things quite well.

Other things I have noticed - everytime I speak, she says pardon - I think it is to buy time to process what has been said. Also, she says everything is tasteless which I understand is quite common.

Yes, they go off food. My mum would live on cake and biscuits if we let her. Everything we cook for her, she hates...until she tries it and then she likes it. But what she'll eat one week, she refuses the next.

They definitely need processing time. Try to speak slowly and not to use to complicated sentence structures. They can mask because they will fall back on tried sentences that always work. They will listen, nod and agree and offer to make you a drink. Friends used to say that if I hadn't told them, they wouldn't have known. But obviously longer conversations would have shown it up. And they can only keep it up for so long because it's incredibly tiring for them. Imagine listening to a foreign language when you only understand 25 - 50% of the words. The concentration of trying to figure out what's being said would be so tiring and you'd be scared of responding in case you'd got it wrong and said the the wrong thing.

Mum kept hiding things, plates, cutlery, shoes etc. She was constantly losing her keys. We got a fantastic set of fobs from Amazon. 6 fobs work from remote control. It used to cause so much stress and bad temper looking for her keys or the tv remote - which she'd deny she'd ever known. "Madison, you're stupid. That door has never had a key." That door being the back door! Now we just press a button and find stuff straightaway. So easy and my life is all about removing as much stress around her as possible.

@madisonbridges - I'll look into those fobs. Are they like the Apple Air Tags?