Considering running away

[tomissmymum]

I can’t do this anymore, full time caring for mum, she’s very, very confused tonight, she doesn’t believe she’s at home - she is - , she wants her mum, she thinks her mum is dead, I took her to see her mum who is alive and well, then she told me her mum is an imposter .

she’s going into hospital on Wed . OOH GP said they’re going to drop valium in the door so she can sleep . I’m currently lying on top of her bed telling her every 3 minutes that we are at home and that I’m her daughter . She is absolutely petrified . I slept 90 minutes last night . This has been going on 8 hours - she’s been pacing back and forth for 8 hours .

GP said this could get worse, and worse, and worse - it might get better depending on cause but there are many causes and many of them are things (dementias) that will only get worse . Frontal lobe is shrinking .

I can’t .

I keep thinking about running away tonight, I’ve spoken to 111 who said a CPN will call me back but I’m desperate, I need another adult in the house with me . What do I do? I’ve got a 24 hour emergency number for mum’s care at home, do I phone them?

@tomissmymum I’m sorry that you are going through this. It’s so hard. You are doing a great job even if you don’t feel like you are.

How are you managing to keep going on your course OP? Is your Uni supporting you ?
This sounds overwhelming for one person to deal with never mind one so young.

So sorry to hear about your mum, OP. It must be so hard for you. Also a bit scary - me and dp are 70 and still in possession of all our faculties (so far). Hope all goes well - I'm sure the best thing for both of you is for her to be admitted to a care home.

Am I right in thinking that your mum doesn't have an actual diagnosis OP? Has she ever been seen by memory clinic, had a CT head scan or been assessed by a neurologist?

She doesn’t yet no, she’s been to see neuro psychology three times - first time they couldn’t assess her, second time they said her cognition was fine, third time they said again couldn’t assess her .

She gets in a blind panic when she sees doctors …

She’s seeing neurology regularly yes . They thought it was dementia caused by functional neurology but GP’s now saying they need to work out if the frontal lobe being smaller is part of the problem, or if that’s just age, or a result of head trauma .

She’s much more settled tonight, carer helped me a lot this afternoon - I think she’ll panic when tea time carer comes in though, that’s what happened yesterday anyway .

Uni are mostly supportive, I’ve got an essay due tomorrow and an exam on Wed neither of which are going to happen though, waiting on my lecturer getting back to me about it . I’m desperately trying to hold on to it, mainly because if mum has to go into a care home and I’m not at uni I’ll be homeless, at least in uni I’ve got a higher chance of a good career at the end and student accommodation .

Glad it slightly better today. Couple of thoughts if it's a lot worse suddenly, any chance she could have a uti or be dehydrated, both can exasperate dementia symptoms. The other thought is could she have had mini strokes, possibly when asleep - this fits with the young onset and sudden deterioration.

As hard as it is to let go, you need to think of yourself too, if it is dementia there's no cure so please do let yourself have a life. Find a nursing home you can visit and that the nhs will fund (they do exist) then for your own sake put your life first, if she could tell you she would want this

They offered to do an ambulance and admit at midnight last night but agreed probably wouldn’t help and she’d be even more scared . The doctor last night said in all likelihood she’ll be kept in hospital tomorrow anyway, said there’s no way I can keep this going much longer .

Lay in her bed until midnight trying to reassure her that she was safe - she’s terrified out of her wits, she keeps asking if she’s dying, saying she doesn’t want to die etc .

Fell asleep eventually at half 1, took zopiclone again which must have stopped me crying as that’s all I’m doing just now, just endlessly crying. Then next thing mum in my room at 7 asking for a shower, which is now done, hair straightened and she’s got clean clothes on but she’s still very, very confused .

Hey there, just letting you know that I'm thinking of you. How's things?

@LadyLolaRuben wrote an excellent post above, making a good point. You need to become your mums advocate, and seek what she needs. You are not - NOT - letting her down in any way of others are needed to help care for her, either as an inpatient in hospital or if she needs a care home. You will need to make sure that it is the best placement for her, and to make sure doctors etc know her needs. First step sounds like the appointment tomorrow? What would help for that? Would listing things you want to raise help you get it clear in your mind?

Loving someone can be an act of bravery. It's active, not passive. You aren't failing at anything, you're advocating for someone who needs proper support, a diagnosis, a treatment plan, a care plan.

Definitely no UTI or dehydration unfortunately, I really thought that too - because she pees 20 times a day! - but no, they checked on Saturday and all clear.

We thought TIAs too but no apparently, although she could have one in the last few days I suppose .

I need to let go yes, I’m just scared, I’ve spent the best part of 30 years with my mum in one way or another, she’s my best friend and I’m desperately not wanting her to leave me .

Hi, thank you ❤️ Yes will definitely write a list of things . There’s a care home we were offered before but it’s quite a distance away and it’s a locked unit, I’d like somewhere where mum could still go out . She loves swimming, walks, the beach, flowers, shopping and going out for coffee . I‘m not sure if she’d be allowed to do many of those things in a care home but I wouldn’t want her stuck in a lounge all day . Need to speak to the different homes and see what they can offer . Trying not to laugh, if they’re offering memory stuff it’s usually of the 1940s/50s but mum’s youth was 1980s and more Boy George than Vera Lynn!!

it’s horrible, everything we used to enjoy I want to do them but there’s now this sense of urgency to it . We used to go glamping in the summer in a pod not far from here, at nighttime you can hear all the owls and it’s beautiful, I want to do that once more with her - it’s only 7 miles away, but I’m not sure if we’d be allowed .

My sister gets looked after - she also has disabilities - but she’s more able, she’s got 24/7 access to support and someone’s in her flat most or the day . It’s a shame mum couldn’t go somewhere with a team of live in carers who could do the same as they do with sister .

I was drying/straightening her hair this morning and asked if she remembered doing mine before school years ago, she laughed and said to sit down and she’d do it - laughed even more when she realised my hairs now v v short and doesn’t usually need either !

Cross posted.

This sounds like it's the crisis point, the point at which it has to change. You are enough. It's just your mums needs aren't something that one person can handle right now, and you need to get her help. A diagnosis, maybe medication to make her less distressed. Advocate. You need to advocate for her best interests, and to support her.

Is there anything practical you can do? List of issues to raise tomorrow? Any tests or scans you think she needs, that you want to discuss with doctors? A bag packed to leave with your mum if she does stay in?

Have you had something to eat and drink?

sorry, keep forgetting to change the bloody name on this - stealmysun is me too 😂

Would there be any difference in her if you stopped correcting her and just agreed?

I saw years ago advice to not counter them, and just agree. And go from there.

Not sure if that's something you've considered.

I think we’ve just cross posted again 😂

bag’s all packed and ready, she’s settled just now so will see what GP says at 10 . Am hoping mum will talk to her on the phone too, she might remember her voice (she trusts her) . Although she’s telling everyone she loves them just now, bur insuooose there are worse things to be told !!

goinf to do a list this afternoon, they’ve got lists that were written back in September or so of issues/symptoms and things she needs help with, can do that again so they can see deterioration since September .

My dad's been in a locked unit since last summer, but the staff do let me take him out - I know I know, different circumstances etc but even though he's on a DOLs, they do let me at times.

Focusing on homes etc is a great step, and I totally get that urgency to do everything you want. My dad's placement isn't straightforward and I just want it sorted so I can do things with him before it's too late.

So my dad's been on a psych ward since he was taken there last summer and he has improved. Not his dementia, but he was really unwell and now he's calmer, more friendly. His distress which he showed as anger is way reduced and we have a much better connection, which is odd, because who connects with their parent in those circumstances? So, while I know he's declining in one way, he's also better than the crisis last year. I don't know if this helps at all, but if someone had suggested this could even be slightly possible last summer, it would have helped, I think.

98% it’s dementia, they think probably frontal lobe - they’re going to do a PET scan to confirm and they want to check certain protein levels in the spinal fluid but they think yes, she probably has dementia . there is still a small chance it’s not but they said they are pretty convinced .

They came through and said a lot to me about inheritability and the chance that this could affect me, my sister and any children I have (my sister won’t have children, she’s severely autistic) .

My aunty came with me and told me to stay positive, think of what we can do to help, stuff like that .

I’m hurting all over and so scared of the future .

thank you xx I’m so sorry I didn’t get back to you, it does help yes to realise there might be better days . I’m so dreadfully sad and scared tonight but hopefully in time it’ll settle . Mum was fairly amicable/settled all day, she’s tired from her LP though, I’m hoping she’s fast asleep in bed just now . Away to check in a mo . I’m glad your dad’s more settled and you can take him out from time to time x

How do you not just give up? They said I’ll be constantly supported but what do I do? I’ve always cared for mum and I don’t know how to live without her.

Oh love, I'm sorry. I'm sorry. So sorry.

How do you keep going? Idon't know, but my dad still needs me to look after him right now. Advocate for him. Make sure that nurses take him seriously when he's going on about something. Get his clothes, his bits. Listen to him. Take him out. Soothe him. He calms down for me in a way he doesn't for other people. He's deaf and can't really hear anyone else. He still hears my voice clearly and I can tell when he's just pretending that he's understood and not really taken it in. He's my dad. Just spending tone with him is something which at the moment, I can still get comfort from. Your mum will still need you, more than ever probably. It's hard though because you have to let other people help as well.

The inheritance . That's a biiiig thing to mention in the day they confirm (almost confirm) your mums diagnosis. It plays on my mind. My nan had dementia. My dad does. His brother does. I try not to think of it. Can't process that right now. If you find out how, let me know.

How do you manage without them? I don't know, but it's not a coincidence that right now I'm more the person I was at 10, than the woman I was at 25, if that makes sense? It's like I've gone back to my childhood, the bedrock? Between you and me (and mumsnet) I have a bloody hamster in my bedroom right now, like I did back in the day. I'm not sure what's going on quite, but there we go.

Not suggesting you get a hamster BTW

It is scary. But it does help, having nurses and doctors who understand to support you as d your mum. Not many people do despite everyone saying "oh I know someone who had dementia". And certainly, my dad was really unwell last year and while he still has dementia - and has declined, he's also 'better' - less aggressive, less distressed. So there is that.

I hope you both have a peaceful night x

❤️❤️❤️❤️

we did, thank you xxxx

Thank you so so much, your message was so wonderfully comforting to read last night .

Family are clinging onto the idea that she can be ‘cured’ or rehabilitated, no matter how small the chance is that this isn’t genuine dementia, they said we have to stay positive that it won’t be FTD . We won’t find out either way for months, not until they do PET scan and get results . I don’t think the doctors would have told me all that info for no reason. They asked so many questions . I can’t go around for the next six months desperately hoping they can ‘cure’ my mum and get her back to normal, I keep thinking if we could have done that surely she’d have done it by now . I don’t know if that’s the wrong way to feel.

yes I’m with you that it wasn’t the time or place to tell me about inheritability and genetic screening, I can’t even begin to think about that . Very thankful for sleeping pills last night, I was able to fall asleep and forget about it for a few hours .

also very thankful for the fact that after they’d told me all that the ward sister came through with tea and biscuits and tissues, and told me to think about today, tomorrow and next week even, but not next year . Said deal with problems as they come .

I know deep down that my mum isn’t my mum anymore . I said that to them yesterday .

I know what you mean re feeling younger, I feel less mature than I did a few years ago, I just want my mum to tell me it’ll be OK .

Mum’s carer tonight told me her mum died of FTD fifteen years ago, her mum was 58, she was 32 . Same ages, roughly . She said her heart breaks when she comes round because she sees her mum in mine . Sat and spoke to me for an hour and gave me her phone number .

thank you so so much xxxx