how do you make peace with possible bad news?

(40 Posts)
howdoibegintodeal Sat 27-Nov-21 11:57:08

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) .

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Elderflower14 Sat 27-Nov-21 12:06:56

Sending you huge hugs...
The Alzheimers Society do a support line...

howdoibegintodeal Sat 27-Nov-21 12:21:17

Thank you, I spoke to the Scottish one yesterday who said if mum gets a diagnosis they would be able to support - said due to her age a lot of what they offer won't be much help but might get a CPN or dementia link worker .

It's so difficult; other relatives have had dementia years ago - e.g my dad's mum but she was still able to chatter away, recognised her photos, talked away about her wedding, when her boys were young, what she did in school, her friends . What happened that day she'd have no idea but 30-40 years ago was still there and she would still yap on the phone, up until about 9 months before she died .

But mum doesn't really talk about anything. My 30th birthday was in July, my aunty asked mum her favourite memory of me and mum just shrugged and said don't know . That shouldn't upset me but it hurts so very, very much .

She's living with her mum (my grandmother) who controls conversations a lot so I don't get to talk freely to mum much at all now, and I'm finding I'm physically recoiling when the phone rings as its so unpleasant - which is hurting me too, I want to be there for my mum but the whole situation is hugely overwhelming me.

I had a panic attack on Thursday after getting off the phone, so severe that NHS24 sent an ambulance round as I had chest pain/difficulty breathing. There must be an easier way to manage all this but just don't know how .

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howdoibegintodeal Sat 27-Nov-21 15:07:33

If she does have dementia it’s wrong to find it frustrating that she’s not speaking isn’t it? I phoned just now for a very brief minute and hardly got two words - and my gran snapped at me for daring to ring . Just finding the whole thing making me feel so bloody angry and frustrated and like screaming at anyone listening but can’t .

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ArblemarchTFruitbat Sat 27-Nov-21 15:14:45

I'm so sorry to hear this. My father has dementia, but refuses to be assessed and it's heartbreaking - he forgets things seconds after they've happened, repeats himself, gets names mixed up.

Not helpful for you to have your gran snapping at you either. flowers

I'm not surprised you are having panic attacks - I'm glad you were able to get help quickly - was anything offered to help you manage your anxiety longer term?

Notsandwiches Sat 27-Nov-21 15:19:02

My mum was diagnosed with early onset alzheimer's...not as early as your mum's but early. I can see how the lack of conversational involvement could be alzheimer's but it could also be depression. Equally the lack of self care.

One thing I would suggest is trying to get your mum into a low carb way of eating as it seems to slow down progression.

I hope it's not alzheimer's for all your sakes.

BeyondMyWits Sat 27-Nov-21 15:25:26

If she does get a dementia diagnosis, oddly, it can make life seem a bit less frustrating. You know that she can't do anything to get better, you know that nothing you (or anyone else) can do can make her better, so it takes that pressure off, makes it easier to live in the moment with them.

You can sit with them in companionable silence, or chat away, not expecting a response because you KNOW now that it may be beyond them.

Stuff won't get better. That's what gets to me the most... if vascular dementia, this is the best they will be. People don't tell you that. It sucks. You are allowed to think it sucks, and get frustrated and have a cry, whatever gets you through the days...

Sending you many, many hugs and hope you can find the support you need. We are on the same journey.

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Rangoon Sat 27-Nov-21 15:31:16

Your grandmother must be under tremendous strain. It's her daughter after all and you never expect to be looking after your child with dementia.

howdoibegintodeal Sat 27-Nov-21 15:59:46

Rangoon

Your grandmother must be under tremendous strain. It's her daughter after all and you never expect to be looking after your child with dementia.

She is yes, I don’t know the other solution though . Social work have said Mum can get care four times a day but they can’t find a care agency to pick it up , they can’t put her in a care home as she’d end up miles and miles away from any family and is a bit too able apparently, but not independent enough for sheltered housing either .

And social work said if I move home (I moved out in September) I’d be expected to pick up where I left off and go back to full time caring .

It’s hell; I’m up awake most nights or having nightmares .

I desperately hope it isn’t Alzheimer’s too, but just any answer would be a help just now. The not knowing what’s coming is so bloody hard.

Mums had mental illnesses for years, she’s even had ECT and stuff, but she’s only ever had good support once .

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CPL593H Sat 27-Nov-21 17:05:18

I'm sorry that you're in this horrible position. I think the first thing is to get as accurate a diagnosis as possible (there seems to be a lot going on here, including historically) and work from there. Your grandmother is presumably over 70 and her being a long term carer for someone with a deteriorating condition isn't realistic. It sounds as if she's currently on the cusp of being eligible for residential care as things stand and that implies quite a high level of needs.

You moving back in might on paper "solve" a lot of problems in the short term, but it won't for you and you matter too. Get the diagnosis and then ask for a meeting with social services and any other involved professionals and do not take on more than you genuinely feel able to. There may well be no ideal solution, sadly, but there will be one which does not involve the sacrifice of family members wellbeing and social care/health services should be taking the lead in finding it.

TikkyFlikky Sat 27-Nov-21 17:19:37

I've only got a limited experience of this from what my Mum went through with my elderly grandfather.
Firstly, I think it is completely normal and should be expected for you to be very upset, grieve and not have to power through the whole time. You should allow that for yourself.
Secondly, in terms of the caring. My Mum did a lot for my grandfather. But she was very very assertive with social workers, ambulance staff, hospitals doctors and she maintained this stance throughout. She is an OAP herself and had several agencies telling her she would have to move in with my grandfather. She politely and firmly refused, and this wasn't just on one occasion. She had to go through some horrible decisions of leaving my grandfather whilst thr ambulance was with him after a fall to show them that he wouldn't have care at home. She cried A LOT. But drove away. And it was the best thing. They were forced to admit him to hospital and give him a proper assessment and care (well, "care"). My mum found this extremely difficult but she is also caring for my Dad, lived a distance away and is an OAP herself, half the weight of my grandfather and only just 5 foot to his 6. Luckily she's intelligent, can access various systems and has friends who could advise her. But, I'll make no bones about that being horrendous for her emotionally and it took its toll.
My grandfather, was relatively unaffected in a weird way by that side of things. He forgot most of it. And in that was it was a blessing.
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.

CPL593H Sat 27-Nov-21 17:22:19

To add-don't let anyone guilt you into things. Your extended family are in a position where they can be blithe about the situation and I doubt any of them will be stepping up to offer practical help, by the sound of it. Look at it this way-if you were living in Australia, would you be able to abandon your life there to provide open ended full time care? The fact your life is here does not mean that you should. I'm writing this as a full time carer who is doing it because I am able to and I want to, BTW.

howdoibegintodeal Wed 01-Dec-21 11:02:34

CPL593H

To add-don't let anyone guilt you into things. Your extended family are in a position where they can be blithe about the situation and I doubt any of them will be stepping up to offer practical help, by the sound of it. Look at it this way-if you were living in Australia, would you be able to abandon your life there to provide open ended full time care? The fact your life is here does not mean that you should. I'm writing this as a full time carer who is doing it because I am able to and I want to, BTW.

Thank you flowers

Appointments were all cancelled due to weather so we’re no further on in knowing what’s wrong, or isn’t wrong .

Speaking to Mum is difficult at times now as I keep wondering if she’s even remembering who I am, or what I’ve already told her, and so often I desperately want her advice and can’t get it. It’s starting to feel like it did when I phoned my gran, that you were having a very one sided conversation . Sometimes I think she makes the connection that she knows who I am but other times not at all . I’m 99% convinced that she does have dementia tbh .

I have another very close friend who I look up to as being like a mum to me, but I’m not her child, I’m not related to her at all - and she might walk away one day .

Spoke to a CPN yesterday - well at about 2am this morning - who reiterated about staying put and not falling back into caring role but then said, ‘you know there’s probably only one way this is going to end unfortunately’ and Christ, I was awake until 6am . Which is brilliant as I’ve a uni exam to do today … absolutely cracking .

Extended family know situation, my mums siblings try to support as much as they can but I suppose everybody has work and their own families and stuff . I just wish one of them would phone and ask if I’m OK once in a while.

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howdoibegintodeal Wed 01-Dec-21 11:02:57

I’m so sorry others have been in this situation too, it’s totally utterly shit .

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Knittedfairies Wed 01-Dec-21 11:08:10

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💐

howdoibegintodeal Wed 01-Dec-21 11:21:17

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 flowers, 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 .

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FlowerArranger Wed 01-Dec-21 11:46:31

@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.

FlowerArranger Wed 01-Dec-21 11:47:31

* at risk of being overwhelmed...

CPL593H Wed 01-Dec-21 15:56:15

@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 flowers

ClitorisAllsorts Wed 01-Dec-21 16:30:13

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 flowers

howdoibegintodeal Thu 02-Dec-21 11:51:06

Thank you flowers

@ClitorisAllsorts that does sound like me - thank you so much flowers 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 flowersflowersflowers . 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 .

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howdoibegintodeal Thu 02-Dec-21 13:11:26

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 .

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howdoibegintodeal Thu 02-Dec-21 13:12:14

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

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SSOYS Thu 02-Dec-21 13:15:14

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.

whitehorsesdonotlie Thu 02-Dec-21 13:17:06

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?

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