how do you make peace with possible bad news?

[howdoibegintodeal]

My mum's being assessed for early onset dementia, she's mid 50s . She's had problems for years and years, slowly getting worse - she doesn't talk much anymore and spends most of her time staring into space or picking at her hands . Self care skills are very limited, she's been assessed as unsafe to live independently and needs help with all but most basic tasks .

Her neurologist phoned me last week and said they're going to reassess her next week if possible, they aren't sure what's just severe mental illness (said possibly depression and conversion disorder/FND) or what's possibly dementia, but he wanted to me bear in mind I might not get the news I want. Mum's GP also phoned me and said much the same thing. They said if its bad news they can offer support post diagnosis for one year at least .

They've been talking on and off about dementia for several years and I'm very aware that my mum hasn't been herself for a long time but I'm finding I'm a bit overwhelmed and feeling physically ill with it all. I've got one sibling, she's younger than me and has her own SEN - we have talked about the possibility that mum might get worse rather than better

We don't have other family that we're especially close to, do have a big family but wouldn't normally talk to them about problems or worries. Have tried and just got told there are worse things than dementia, everyone dies eventually anyway and I would get used to it. I suppose that's true but I'm not sure how I can.

How do I start dealing properly? It may not be dementia, it might just be the same as always - mum's been seeing psychiatrists since long before I was born, but I'm distinctly aware that there has been a big change over the last few years .

Consultant and GP said look into early onset dementia support groups in the UK but there doesn't seem to be all that many - and there's very, very limited support for carers if you're not under 18, or caring for a child or an elderly parent (and even then, its still very limited) .

[howdoibegintodeal]

There could be only so much one person could manage surely, I feel like I’m at the end of my limit now

[howdoibegintodeal]

Alone as in I've no family I could ask to join, I'd feel embarrassed begging . I can't even afford Christmas dinner anyway .

[howdoibegintodeal]

So they've found Mum a bed in a care home and she's likely moving in within the next 3-4 days or so, but definitely before Christmas.

Thats a shame as I was going home next Thursday and we were going to panto on Sunday . There won't be any point now going home .

Looks like I'll be doing Christmas entirely alone .

[howdoibegintodeal]

@Nsky

I think it’s likely early onset dementia, you will grieve for the mum you knew, it’s a different chapter, you know she won’t come back from this.
Hard as it is, try to accept it, you must try and take of yourself ( is your dad around?), things get sorted one way or another.
Take care xx

My dad is, yes, though we aren’t massively close but I do talk to him and his wife (stepmum) .

Yes that’s basically what social worker and (my) GP are saying, it’s likely heading in one direction . I’ve been my mum’s carer since I was about six years old, I know nothing else to be honest - even when I was working or when I’ve been at uni my weekends were always spent with mum . I don’t have anyone else - my mums my best friend (realistically, my only friend) .

Ahh it’s all just shit. Never felt less Christmassey in my life . I’m so embarrassed as well with the assignment I handed in yesterday, it’s by far the worst essay I’ve ever written .

(save for an exam several years ago where I walked out 10 minutes in).

I don’t know if I should realistically be trying to pack up the remainder of mine and sisters belongings at home over Christmas and clearing out some of mums stuff, probably should tbh . Better I do it than someone else does it.

[Nsky]

I think it’s likely early onset dementia, you will grieve for the mum you knew, it’s a different chapter, you know she won’t come back from this.
Hard as it is, try to accept it, you must try and take of yourself ( is your dad around?), things get sorted one way or another.
Take care xx

[howdoibegintodeal]

They’ve been moved to the 15th now, so I’ll probably head home from uni for Christmas the day after .

Handed in two assignments yesterday, one I totally screwed up and almost definitely failed. The other two are due on Monday, again one will be a definite fail. Uni have said not to panic and everything can be resat in August . GP is ringing me again on Thursday apparently .

Absolutely shattered . I miss my mum more than anything. When I phone she doesn’t really talk to me now, just stares into space or picks at her hands and I almost feel angry with her at times which is a horrendously horrible way to feel .

Friend also eventually emailed back and said facts not suppositions, and basically said (in a matter of words) calm down a bit .

Hopefully once the 15th is out of the way we’ll have a clearer idea of where things are going and what’s going to happen next. I’ve never dreaded Christmas more - intentionally not doing it properly ie no Christmas dinner, no presents etc (though I will stick up a tree), just going to get something nice from M&S and watch TV in pyjamas I think/hope. Family all going away or doing xmas in their own houses and sister will be with her flatmate and carers, so it’ll just be me and mum .

[CPL593H]

@howdoibegintodeal really glad to hear that you got some proper sleep and hopefully you'll "reset" and it will continue. Also great that you have the support of your aunt, who sounds very wise indeed (and lovely)

Did they say when they'd be rescheduling the tests for?

[howdoibegintodeal]

Thank you, was flat out from 6ish through til about 1am and then fell asleep again at 5am and woke up at 12 noon . So not an ideal night but I definitely slept !! Managed to tak out rubbish, do a huge load of laundry and clean the bathroom .

The only trouble is can’t get a clear thought and have got a tremor but I right diazepam does that.

I’ve also spoken to my lovely Aunty who basically said acceptance, and trying very hard to acknowledge loss and grief and feel all that comes with that but also trying to build a life of my own away from Mum, making friends and building up support networks . Said she agrees with social work probably are looking at care homes or something .

She said the one thing no one else in family has - she said this is totally, utterly shit and I’m allowed to feel all sorts of things and to be hurting and frightened .

That’s a huge huge help compared to my other family who said I have to be strong and that I’m the person who they turn to to fix everything and that . Big weight off my shoulders knowing my aunty’s behind me .

[CPL593H]

Really glad it went well. Everything will seem less daunting after some proper sleep

[howdoibegintodeal]

Weeks worth of diazepam from GP, he said that will hopefully help me get a sleep and feel a little bit calmer . I did sleep from half 3 to half 8… going to try and get another hour or two before uni phone at 10.30 . Once they’ve rung I’ll go up to surgery and get the prescription.

[CPL593H]

Sounds like very good advice and I really hope you can relax a bit this evening.

[howdoibegintodeal]

thank you

Counsellor spoke to me for a good hour and said she would move away from it all tonight, make something hot to eat, shower, do laundry (I'm running out of clean clothes) and try to get an early night with music on or a film . She said to shut out imagination and thoughts of the future if I can .

GP is phoning at 8.30 tomorrow, uni are phoning at 10;45, then again at 2 to work out practical side for exams and GP for whether its worth getting PRN medication for the short term ... don't know what's better, to be drugged up and forget about it or what .

Friend hasn't gotten in touch, I'm desperarlty hanging on her emailing tonight . hopefully .

SW did say no matter what label they get on it they'll definitely help so thats a positive .

Thanks

[FlowerArranger]

Im sorry the report from SW has been devastating but hopefully they will put together a suitable care plan for your mum. In the meantime, can you take sone time to focus on yourself and your own needs?

[CPL593H]

I know it won't feel like it at the moment but having a social worker involved and aware is a very good thing. It means they will be ahead of matters when the diagnosis comes and not starting from scratch.

The point you make about suitable care for a 56 year old is very valid as realistically there is little specifically for people with your mother's needs at her age. BUT-here is where you need social and health services to do their jobs and come up with some ideas and a strategy for going forward. It isn't and shouldn't be entirely on your shoulders and it is reasonable to expect them to take the lead. They are not emotionally involved and won't be feeling the loss and pain that you are currently and they will have dealt with many similar situations.

There are no easy or quick answers and it is OK to give yourself permission to take a step back and focus on how you are feeling and dealing with things. I hope that it goes well with your doctor

[howdoibegintodeal]

Thank you . I'm waiting on uni phoning at 5.30 and have emailed uni wellbeing worker and am texting a friend . I don't know what to do . My brain keeps saying maybe I've misunderstood and maybe they're wrong but I don't think I have .

[whitehorsesdonotlie]

I'm so sorry. That sounds really hard. 💐

doesn't sound as if your family will be much help - do you have friends you can talk to about this?

[SSOYS]

I'm so sorry, @howdoibegintodeal. I don't have any experience to offer but didn't want to read and run. My heart goes out to you and to your mum.

[howdoibegintodeal]

Quite a change from 2 hours ago . I almost wish I'd never asked social worker to phone but I needed to know .

[howdoibegintodeal]

SW phoned me and said she cant say dementia because they haven't diagnosed that, but whatever it is it won't get better, and probably only worse and talking about care homes .

Shit shit shit .

They're only confirming what I knew already .

I'm on my own and I don't want to be, and don't know who to talk to .

[howdoibegintodeal]

Thank you

@ClitorisAllsorts that does sound like me - thank you so much xx , yes still getting through it . Halfway through 3rd year now ... one and a half to go and then I qualify (allied health profession) but I'm not sure how much easier that will make things, haha, though I'll have more money at least !!

@CPL593H thank you . Yes sad .

I've spoken to uni this morning, they've helped me write out a plan for essays and exams for just now, and trying to plan for travel home next week/the week after ..

I've also made a GP appointment as CPN said it might help to get short term sleeping pills or diazepam for a week or so. Fingers crossed . Waiting list for actual counselling is 6 months ...

I think yes if can get a label on it that will help a lot, Alz Scot said if they can say yes, this is dementia, then that will open up avenues of support like Admiral nursing and support groups and discussions around residential care . The trouble is where does a reasonably independent 56 year old with ?dementia live, I don't know, wouldn't fit in a nursing home for the elderly ... there's only two sort of sheltered housing schemes at home. Thats a big step because theres no coming back from that .

If it isn't then you're back to the 'mental health problems' and nothing being done again .

I think I;'ve upset home greatly too just now as I said I've secured my tenancy until July 2023, which is great but means I'll be living in my flat full time with zero intention of any prolonged stay at home .

Still - by then, hopefully Mum will have care whatever that looks like !

Thanks so much, it actually helps just writing it down. feel a bit less alone with it .

[ClitorisAllsorts]

Hey OP,

I think I recognise you from other posts, haven’t seen you around for a while… I’m so sorry you’re going through this with your Mum now. If you are the poster I’m thinking of you have so much going on, there’s a lot of history here too. You’ve had some good advice and to be honest very little can be done until she has a proper diagnosis.

Not to sound like a stalkery weirdo, but if you are the person I remember I just want to say I’m so pleased you are still at uni

[CPL593H]

@howdoibegintodeal you sound so sad. Other people have given excellent advice about enlisting as much support as you can and please tell your uni everything, in my experience they are great when there are genuine issues like this. Take every deferment and extension going!

Hang in there because I think things will feel better when you hopefully have a bit more clarity after the tests, this is a horrible limbo at the moment

[FlowerArranger]

• at risk of being overwhelmed...

[FlowerArranger]

@howdoibegintodeal - please listen to @TikkyFlikky and @CPL593H !!

Especially this:

In your shoes I would gather around me as much support and knowledge as is possible, by people in the system. Your GP will have information about local carers groups - go along and get advice, it's practical information stuff that will help you.

But I would add that you need proper counselling for yourself as you are st risk of being overwgelned by the situation. You appear to believe that you are responsible for resolving your mum's issues - but you cannot, and ultimately you are not responsible. You can only do so much, you are already doing more than many people in your shoes would be prepared to do, and you absolutely must look after yourself.

[howdoibegintodeal]

@Knittedfairies

I'm sorry OP; that is so hard. Please make sure the Pastoral Care team (or whatever it's called at your university) is aware of your situation💐

They know , I’ve got someone who rings up once a week to talk about studying (mentor) and I usually end up talking through a few things with her too, she’s lovely . I’ve got a ‘well-being worker’ too who rings about once a month or so.

I keep going over and over and over it in my head and trying to figure out what might have caused it or made it worse and I can’t. GP said some things we don’t know why they happen, we can’t explain them, but we know it’s no one’s fault … I keep going over old arguments and horrible things I said and did as a teenager and worrying that I’m too late to make any meaningful sort of apology.

My sister said at least we would always have each other which is true, if anything happened God forbid, I’d try to get sister to move to live closer to me or vice versa .

I’m so bloody scared and angry and sad .