Not to want to be bloody strong?

[tomissmymum]

DM, probable early onset dementia, age 56; waiting on scans to confirm and stuff although GP and consultants seem pretty convinced .

She needs 24/7 care, she’s having seizures, she’s needing help with all aspects of daily living .

I’ve had no break at all since the 10 March - no more than 20 minutes .

I’m physically and mentally exhausted, I’m crying myself to sleep every night then waking up in the same state the next morning.

two weeks ago I walked out, rang police, threatened suicide and told them I couldn’t do it anymore . SW told me that they’d help - then a week later they told me I probably won’t get any respite until 2023 at the very least . I think they said covid and staffing crisis .

GP said today even if she is diagnosed with Alzheimer’s there’s hardly any help for anyone under 65 .

My relatives are trying exceptionally hard to help which is good .

But I’m exhausted, I’m heartbroken, I’m angry, I miss my mum dreadfully . Im having dreams where she’s back to normal then I wake up and remember and start each day off by crying in the shower . I haven’t got any friends left, I can’t go out even for a walk alone to clear my head as carers are only here maximum 20 minutes.

I can’t keep doing this, I don’t want this anymore - I want to run away and never come back but that would be selfish and it would hurt and frighten my mum .

Surely there must be some help, somewhere, something? I can’t be mum’s carer forever surely? What about my life? There must be something somewhere that I’m missing .

I keep being told in r/l that I’m ‘strong’, but I’m shattered and so close to collapsing some days that I’m clinging on to the counter when standing . This can’t be the only way of sorting this, surely .

Awful situation. You are not being unreasonable at all.

my Dad used to work in dementia care, one of his key things he encouraged relatives to do was to tell SS and similar that you can’t do the caring so they have to provide. You can be there for her through everything but they need to provide the support she needs. Unfortunately when families say they can do a bit they are expected to do it all.

do you have a carers centre locally who can provide you with practical advice on what is available locally?

Are there no other relatives that can step in for a short time and give you a few hours off?

I have no idea what the GP is on about as there is plenty of help out there for those with dementia under 65, and if your mum is unsafe to be left then she needs residential care to keep her safe.
Tell SS in writing that you are unable to care for her, that she is unsafe to be left because x, y, z, and that you will be no longer there from 2 weeks time (they would find her a care place today if they had to). Then be firm - I think you said before that your GP had told you not to end up caring for her, and you cannot do this as you do have a life to live, and your mum will be safe in a home. She needs a place for her wellbeing in the long term as well as yours

CMOTDibbler Yes you are right .My Mum was lost ,confused and forgetful .One night She got stuck in the lift at her retirement flat ,and the fire brigade were called out!This was after getting lost in town and many incidents at home. I had to say to the SW who came out on a visit that I would be waiting in her office and wouldnt leave until a place was found .Surprisingly half an hour later a space was avaliable

I just want to say that you’ve done amazingly well so far.

spaces are available, even for respite. I have a parent in ‘respite’ but to be honest it will be permanent. I wish I could help you and give you a massive hug x

You need to pull back and say that you will no longer provide care. Letting her fail is the only way SS will get involved.

What do these guys say?

www.dementiauk.org/

This breaks my heart. Adult social care is at breaking point. SS will not step in all the while there's a relative caring for someone even if it breaks that relative. It's so chronically underfunded but, hey, rich Tory voters can just pay for private care so what's the problem?

You need to down tools. Only when this happens will they step in.
I'm sorry you (and your poor mum) are going through this.

That ^^
We had to wait until my mum fell and went into hospital (early onset) and my dad refused to have her home and kept saying it was an unsafe discharge
Luckily the hospital after a day or so said yes she needed FT care and she's now in a care home

YANBU. People tell you that your 'strong' so that you keep doing what you have been doing and don't ask them for help.

Tell SS you will no longer be her carer. What is your housing situation?

Where are you roughly in the country. Perhaps we could help. I'm North Wales. If I'm near you I'm happy to come regularly to help if I can. I have an enhanced DBS.

Have you had a social care assessment for her support needs? It sounds like she needs a live-in carer or even to go into a care home. Also please make sure you have an appointeeship sorted out whilst she is able, as it's much harder later on if you have to go through the courts. Once she has been diagnosed with dementia, there is support available - this varies between areas but they should be able to refer or signpost you, as well as providing information and carers support. Early onset dementia is particularly heartbreaking, you have my sincere sympathy.

It's such a hard thing to do but you have to be firm. When the hospital was trying to discharge my DM to my care, in spite of the fact that I work full time and she needed full time supervision, I simply said that I wouldn't have her. I felt awful, as we were very close, but it wasn't in her best interests or mine.

I’m really sorry I never replied, it hit crisis point last few days - if it hadn’t already .

Shes been admitted in hospital, she was becoming agressive towards me - she’ll be kept in tonight at least, and she’s going into residential care within the next fortnight .

I’m absolutely crushed, I wasn’t allowed to go through to say goodnight or tell I loved her, because they thought it would trigger her off again, she was very angry with me . She was frightened and so so angry with me and I’m not even sure what I’ve done - she said I’ve caused her endless problems and it’s all my fault .

I’m home in her house now and it’s so quiet . I’ll have a chance tomorrow to do some housework at least .

I’m still shaking from earlier, she was throwing things at me and I’ve never heard her speak to me like that before, I got a hell of a fright .

Oh lovely, it's the dementia talking. It's not your mum. Do not blame yourself - it is not your fault. She might even be mistaking you for someone else. My gran who had dementia mixed her daughter - my mum up with HER mum (who had died 50 years earlier)...

Don't agree to have her home and conti ue caring for her. They will leave her with you rather than fund a placement. Your best bet is to refuse discharge to your care and insist they find a care placement to discharge from hospital. It will be tough on you - but sadly that is where she needs to be. It is likely once she is settled she will return to the mum you know at least in patches.

Take care!

What @LittleOwl153 said. It's not your DMum talking, it's the dementia. I know how difficult it must be for you. If you can manage to take a step back, it might help.
Contact either the websites for Alzheimer's or Dementia- they will give you a lot of support.
I know it's not easy.

Massive hugs to you. Dementia is a cruel illness and aggression is a terrible part of it sometimes. There’s a real chance she will have forgotten whatever she was feeling today when you next see her. She’s safe now so you need to try to relax and care for yourself.

it’s totally impossible for one person to give 24/7 care. The hospital have entire teams to do this. Make sure you have a chance to discuss the next steps with the SW and visit any places with spaces to see for yourself if the place is a good fit. If you have someone to support you please use that.

best wishes x

What’s a wonderfully lovely soul you are ❤️

@tomissmymum Hows it going this morning... hope you managed to get some sleep.

@LittleOwl153 I did, thanks, woke up 5ish then again at 9 and then 10.30 just got up.

I’m struggling this morning, I can’t contact mum at all as I didn’t leave her phone with her - she wouldn’t understand how to use it anyway, and I’m not sure she would want to hear from me anymore anyway . Dementia is a horrible, horrible illness, it’s like seeing her slowly stripped away .

The nurses said mum slept a little bit last night, and she’s on 24/7 observation - someone is sitting beside her constantly . Poor mum . I’m still so scared I did the wrong thing by taking her to hospital where she’ll be frightened and lost . But she was frightened and confused at home anyway .

I’ve never not said goodbye or goodnight to mum before . I have horrible dreams/nightmares where they’ve found a cure and she’s fixed, and she has a normal conversation with me, or the other ones where she just gets worse and worse and then dies of this, it’s bloody horrible .

everyone is being very kind to me but I tried cleaning the bathroom floor, found mum’s shampoo and ended up in tears . I need to give the whole house a really good clean, it’s not been done for days .

@erikbloodaxe thank you so so very much, I’m really sorry I missed your post.c that was an incredibly kind thing to offer ❤️❤️❤️ (We’re opposite ends of the UK) . Thanks so much xx

I have horrible dreams/nightmares where they’ve found a cure and she’s fixed, and she has a normal conversation with me, or the other ones where she just gets worse and worse and then dies of this, it’s bloody horrible

Sadly this probably sums it up. There won't be a cure - but she will have moments/hours or even days where normal conversation occurs which will flip with the worse bits. The worse buts will consume more and more time till the end. One of the weirdest things we found with my gran was at the end. She had heart failure which killed her but in the 5-10mins before she passed she was as clear as a bell. That was spooky and will live with my mum forever.

That is all so hard.
One thing to remember with dementia is that people can often remember emotions but not understand why they feel like that or that the cause of the feeling has been resolved.
I needed to change some addresses on accounts of my dad's after he'd moved to get the statements so I could do his tax return. I explained this and thought he understood.
Apparently he didn't and arrived at my door 30 minutes later, very angry and aggressive because I was defrauding him. Dh calmed him down ( he wouldn't and never has listened to anything I say). Dad understood and went away happy. Next day he arrived at my door very angry and aggressive because he know he was angry at me couldn't remember why but returned his Xmas presents because they were all wrong and I was clearly stupid. ( We'd bought a new shirt, jumper and undies - because he needed them ). He still needed them. We snuck them back to him by putting them in the cupboard. He didn't remember that they were new 🙄.
Dementia is the absolute pits.

Do you live with your mother? If you don't leave it. It will still be there later.

Get out, get some air. If you can see some friends. Give yourself a break from it all. It's going to be a tough few weeks as you get her settled somewhere she can live safely. But the reality is she shouldn't come back to live with you now so you have time to sort things out there.

OP I’m in floods of tears just reading this thread. I cannot imagine the hell you’re both going through. I hope time helps you realise you have done everything you can for your mum, because you truly have, and she would never want you to remember her for this. Thinking of you both x