Mum’s dementia and siblings

[ASkarsMissus]

My mum has recently had a dementia diagnosis. She seems to be going downhill quite quickly and it’s all been very stressful. I have 2 brothers and we all live within about 8 miles of my mum’s house. She needs support with medication morning and evening and can’t use the cooker so needs a hot meal cooked for her once a day. This means 3 visits. We are waiting for a social work assessment but there is a shortage of home carers where we live so even getting one visit is going to be hard.

I’ve been away for one night with some friends and we worked out a rota for my brothers to fill in the gaps so that she still had her 3 visits. I phoned them both tonight to see how things went this weekend and one of them thought it was just a typical weekend and relatively good but the other one has just lectured me for 10 minutes on the phone about how bad she is detailing things that have happened over the past 48 hours including losing her keys, not being aware of times etc. Nothing that isn’t a daily occurrence. He argues with her and despite me saying he should just agree with her he just got more wound up. He was shouting at me the end saying he’s only going to see her once a day and we should all be doing the same. I managed to say to him look I can hear you’re stressed and it’s been a hard weekend but he shouted back that maybe he should go away for a night. I said as calmly as I could that I didn’t deserve that and that I was hanging up and now I’m sitting here shaking and so upset that he can speak about our mum in such a cruel way. Also that he can hold me going away for one night against me when I do so much more for mum than either he or my other brother do. I’m the one who does her washing, takes her shopping, changes her bed, reassures her, cooks her meals, deals with her post, takes her to appointments etc etc etc. It’s my house she comes to 3/4/5 times a day when she needs someone to speak to or help with something.

So much for my relaxing night away. Not sure what I want from this but I just needed to write it down. It’s hard enough seeing my mum disappear before my eyes without my brother being so aggressive and unkind to everyone. Part of me thinks it’s his way of dealing with the grief but I’m sick of making excuses for him as this has been escalating for weeks. 😭

Thanks for reading if you made it this far.

I’m so sorry you’re losing your mum in front of your eyes, working so hard to keep it all together and then having to put up with this. You didn’t deserve his outburst.

Thanks for this. I hate him right now 😩 It’s just making a bad situation worse.

My dad had dementia I can relate to this
my guess is your brother is in denial and not accepting how bad she is

Yeah I think this is true. My dad had dementia too and although he wasn’t quite as cruel, he didn’t cope with his diagnosis either.

He’s just text me with a list of excuses why he’s not going to be involved. Must be nice to have the luxury of choice. 😡

It sounds like he's going through the anger stage of grief and taking it out on you (which isn't fair).

From what you've said, this situation has become too difficult for all of you. It's taking over your lives and affecting your relationship with each other and with your mum as you're now all carers.

You said your mum needs carers 3 times a day but you'll struggle to find a carer for just one visit a day. What happens as she gets worse? What if she forgets she can't use the cooker and ends up starting a fire?

You're probably better off looking at residential care homes. At least then you and your brothers know she's safe and being looked after. You can still visit regularly and take her out for lunch or coffee. Much less stress for all of you and you can focus on spending quality time with your mum.

Thanks for your message. After typing it all out I started to think the same re residential care. Sadly we live in a relatively remote area where there aren’t many choices. When I spoke to social work last week they offered respite for a fortnight but my brothers didn’t want this. I knew then that more and more would fall
on me but thought we had some time and they promised they would help more. Here we are not even a week later ☹️ There are no long term spaces locally and our local hospital is full of elderly people who are waiting for a bed in a care home. It’s so awful.

We have an assessment at home this week so will see what social work say then. We have disconnected the cooker so she can’t use it even if she tries.

I get that he’s angry but it doesn’t help her or anyone else. I’ve been angry too but I didn’t just abandon her.

x

OP I could have written this post ! MIL dementia has nose dived since a stroke on z Easter Sunday. Physical recovery excellent but dementia has deteriorated. Husband and siblings at loggerheads…bloody stressful because I am a dementia nurse and will not take any advice 🤷‍♀️Bloody wearing and has caused big row with husband tonight.

Sorry to hear you’re going through the same. It’s hard enough without all this added stress ☹️

If he isn't going to help, he doesn't get to make the call about what happens next. Start looking at care homes and if he argues say he's left you with no choice. You can't do this on your own.

I am so sorry to read this.
My DM has alzheimers, she was diagnosed seven years ago.

She deteriorated quite fast and within two years we needed round the clock care. We all split the workload between us (6 siblings so you'd think it would have been easy) but it wasn't. Certain family members didn't show up, others did twice the work.

SW offered respite. We took it and during the respite period we realised she needed full time residential care.

She's in the end stages now, not long left for her, but she has always been our priority (regardless of judgemental extended family member who talk behind our backs and say we 'dumped' her in a care home, they know nothing)

Please put your own mental health and wellbeing first and foremost 💐

I'm sorry your brother is being such a dick.

And sorry that care home and homecare provision is so bad where you are.

You don't deserve either.

Not that it will likely help the situation but I think you are totally justified in putting your brother right in a forthright way wrt who is doing what and saying sorry if you are struggling to cope with the reality of mum's situation but I am not here to both do the lions share of the caring and put up with your abuse just because I had one night off. If you can't cope take your inability to a therapist, not me.

Then you and your other brother can talk about who does what. Hopefully he will step up. You don't really want your angry brother taking charge of your mum for her sake.

Because I can work from home and don't have kids to look after I did quite a lot of caring for my mum in her last 18 months and as hard as it could be I was glad to be able to do that for her. It's a hard road. It's not all bad though.

@Dottymug I completely agree re him not getting to make decisions when it suits him. Thank you

@scoopoftheday Sorry to hear about your mum. Going away for a night was an attempt at putting my own health and well-being first and it worked up til I spoke to him. I’m not contacting him again, he can do whatever he wants. I don’t have the energy to deal with his tantrums and care for my mum.

@wafflyversatile thanks. I won’t confront him, I hate arguments and it will just make me more stressed. My other brother and I will do what we can and hopefully get some support soon. I fear he will regret his behaviour in the future but he’s big enough and ugly enough to work that out for himself. I’ll keep doing my bit because I love her and don’t want to look back and have regrets when the inevitable comes. X

Thanks everyone for your comments. I feel a bit better this morning. My mum is my priority, not my brother.

Respite is for the people doing the care. If you need it, take it.

Is meals on wheels an option? They can bring in the hot food and plate it up.

I hope you can sort this amicably. You are right to think about a specialist dementia home, the problem is it costs a lot of money. My brother was dead against my mother being "dumped" in a home all very well for him to say that he lived in Spain and HAD NO IDEA what dad and I were going through I still think the real reason he was against it was because he wanted that money in the form of inheritance. Thankfully dad and I overruled it and as dad had her POA he couldn't over rule us. Although actually he did try to change the POA, fortunately for us mum couldn't remember her signature to sign the amendment form so that was the end of that. And the point we said she'd lost capacity. To be fair to him he did come round after he came back and saw how much better off she was in the home, with entertainment and activities and just generally clean, happier and SAFE with the near constant observation by staff going past. Her falls were getting more and more frequent and this was one of our big concerns.

As you know they only get worse and if you're already at the point you've turned the cooker off because she's a danger to herself and she spends much of the day looking for things she's "lost" then she's pretty close to the point you can justify a move in her best interests.

Carer visits are dodgy in that they're often at funny times despite what you asked for and very brief as the carers are overloaded with work. Meals on wheels - well my experience was that they were delivering my uncles lunch at 1030am, it was put in the oven and he had forgot all about it when I went in to sort him out in the evening! Happened most weeks, so again I wouldn't rely too much on that.

@SheilaFentiman no meals on wheels here sadly

So sorry you are going through this. We had an elderly neighbour who developed dementia and when she needed to and agreed to go into a care home, all the local ones were full and she ended up in one half an hour away - we are in a city so there were several that were walking distance from where we lived. I would start looking at care homes that are relatively local now and once you’ve found the best option, get her on a waiting list so that you have a back up for when she gets worse.

@CrotchetyQuaver things have settled down for now but he’s a ticking time bomb and there will be more of this to come. It’s already obvious he’s not happy that I have POA.

He will never ever admit he’s wrong or apologise so I’ve had to just try and put it behind me for now. I can’t cope with any more confrontation, stressed to the max as it is. If and when anything else happens DH has agreed to advocate for me with him and my other brother is much more level headed.

You’ve described my mum to a tee. Every day there’s something else lost and the house it turned upside down. SW coming next week so it will be good to speak to someone neutral as I know seeing her every day has blinded me to how ‘bad’ she is.

Thanks

No waiting lists here. It’s needs based and there’s a massive queue of folk, our local hospital is full of people waiting for a bed in a care home. A broken system

Been there op. It’s brutal. You need carers in first and a residential setting ASAP I think, or you will likely all fall out irreparably. Everyone will have a different view on what other siblings do, who needs to ‘do more’, etc, and it makes for some very fraught conversations ime. Good luck with it. I know what it’s like to see your mum effectively wither away and die yet still technically be alive - it’s torture for everyone and everyone deals with it in their own way.

@Purplecatshopaholic thanks, it’s good to hear others experience and advice as I’m struggling to see the wood for the trees. Think we all are. When I’m feeling charitable I know DB is grieving. It’s a brutal disease.

Meals on wheels - well my experience was that they were delivering my uncles lunch at 1030am, it was put in the oven and he had forgot all about it when I went in to sort him out in the evening! My experience was that a hot meal was delivered and put out on the table for him at lunchtime, between 12 and 2. No use to OP, but I didn’t want others to be put off from investigating meals on wheels.

If you have poa and mum doesn't have capacity then your brothers cannot stop a respite place, having poa means you have to advocate for mum and do what's in her best interests. If your brother is shouting and arguing with her that's abuse and for everyone sake perhaps it's safer he doesn't visit anymore. I would chase up the assessment and get in touch with her gp. You can put in a safeguarding concern if mum is not safe at home and the current family support isn't working.

Your situation sounds extremely difficult - sending a handhold.
Is the respite option still available? Could you and your more levelheaded brother come to an agreement about it? Since it sounds as though it falls overwhelmingly on you at the moment, surely you should get the biggest say on the respite care?

Absolutely take the respite. Carer burnout is very real. You have to have a break so you can keep going.
If your brother doesn't want her in respite he should do everything you do for her for two weeks.