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?

❤️❤️❤️ I think it’s horrible whatever age, my friend’s dad has dementia too, he’s in his 80s and I know she misses him terribly . It’s so so hard . I don’t have a great relationship with my own dad and I’m terrified of my Mum leaving me . I keep thinking of all the things and times I’ll want her, like if I have a baby of my own, and then it hurts all over again . It is like grieving a living person yes, and I don’t know how to enjoy things with mum as she is just now at all . I miss her so very, very much .

Gosh this sounds so hard and I'm guessing you're quite young if your mum is only 57.

Have you been in touch with any local carer support organizations? They can be absolute lifelines as someone there for you

You need help, and you're going to have to keep pushing until you get it, this is too much to be dealing with on your own. I'm so sorry you're facing this. You will not be letting anyone down if you decide to move her to a care home. You will be moving her to where there are professionals with the experience and skills to care for her, and you will be able to go back to being her daughter, and spend your time just being together.

I’m thirty .

I just feel so alone in real life, even if a relative could just come and sit with me and hold my hand or take over for an hour . I’m scared to ask for help from family in case they think I’m failing somehow .

she’s fast asleep now so have cancelled the responders coming out, just in case that causes more problems .

she’s complaining of a pain in her back constantly too which makes me wonder if she doesn’t have a UTI but I don’t know .

I’d sleep in her bed if I thought it would keep her safe but she’s talking/muttering in her sleep which isn’t much fun to sleep next to !

I’ve been referred to carers services but the only do a couple of carers cafes, which aren’t accessible to me (one’s 30 miles away, the others 45) and some online stuff, it seems marketed either towards young people under 18 or people caring for elderly parents, so don’t fit nearly into either category . GP said if she’s got FTD we’ll get tailored support offered but I desperately, desperately want them to say on Wednesday that it’s something they can fix although I know that’s very unlikely .

OP I'm so sorry, how terribly sad for you. I will say, IF she has a UTI that can certainly cause confusion so definitely get that checked out.

Please don't fear memory care/nursing homes, my grandfather had alzheimers and I am not religious but I think if angels are real it's the nurses that cared for him there, they were so loving and competent and warm, the most special people I've ever met. My husband's grandmother had alzheimers also and she had a second childhood and was actually quite joyful, the staff at her care center were endlessly patient with her and played with her all the time.

Please don't think she'll be lost to you if she goes to a care center, my family visited my grandpa every day and I spent the night there on multiple occasions. These homes can be wonderful support centers that make sure that patients get the medical support they need plus warmth and kindness all day long.

Wishing you the very best.

My Mum was diagnosed with this at 62. Deterioration and shrinkage of the front temporal lobe . The problem with them at this age is that the authorities seem unsure what to do with them- too old for certain groups but too young for others. We went through as many reviews but in the end we were told that she needed 24 hour care for her safety. She stepped out in front of cars, she walked into plate glass windows , she was unable to plug the kettle in and her clothes would be inside out. Her case was closed but it was up to us to find a care home and her house had to be sold to fund it as it was deemed that she needed "personal care" and not "medical care". The difficulty is that sometimes she was lucid and other times she wasn't. Putting her in the home was the toughest day ( we told her it was for a trial) - she walked out of her home willingly but it didn't go well once we got there. We were subjected to a lot of verbal abuse. Eventually she settled into the routine and she was safe which was important. Her condition did deteriorate and she had a fall which led to her death about two years after that. It is believed that she had a series of mini strokes which led to the initial condition. It's a horrible and tough situation and you have my sympathy. Do what you have to do to make your mother safe. x

I totally empathise with your situation, it’s so very hard. You know your mum can go into a care home temporarily, it doesn’t have to mean she can’t leave if her situation should happen to improve? You can spend as much time there with her as you like, but there will be care and medical treatment on hand too. It’s worth looking into what local facilities are available as the quality varies enormously.

forgot to say I agree with what an OP said about a potential UTI - it sounds likely if she’s even more confused than usual

Please don’t be hard on yourself. You are in an incredibly tough situation. I was in a similar situation with my dad. Going into a home gave us the break we needed. My dad was fine in the home. He was far more engaged with the care staff than with me. Yes, it felt odd but it was ok. Call adult social services and your go and tell them what’s going on. Be honest. He was always far more delusional when he had a uti. You need a life too. 💐

She’s flat out, she slept from about half midnight onwards - I gave her a second valium and that calmed her down . Been through to check on her but she’s still quite groggy and confused .

@RitaFaircloughsWig we’re getting the inside out clothes too . She changes clothes ten times a day and again at night . She can’t dress herself now, she can’t wash, she can’t maintain the house, I’m doing it all for her . If she’s alone she just sits and stares out of the window for hours on end so no stimulation.

Yes like you say we get lucid intervals too where I’m questioning if I’m imagining the rest . Put on an old VHS tape yesterday for her and it was like day and night .

i don’t know if it was being at her mums thay unsettled her so much yesterday, her mum is not getting it at all and told her she just needs to try harder which clearly isn’t the case, I have to let her see her mum but I can’t ever go through a night like last night again .

Carers said they can come out if needed again but said ultimately it’s a medical issue and she needs access to PRN meds eg an anti psychotic or diazepam .

OOH GP called again at back of 3am and said they’re also writing me up for diazepam and zopiclone . I can’t take zopiclone in the house with mum but at least I’ve got it . I’m under a MH team for cptsd (I’ve been mum’s carer since I was 5, the difference is that it was always mental health before so this is new scary territory that it’s not .

We’ve been given details of two care homes that she could go into, one’s been out to visit us already but a while ago . I’ll ring social on Tues . She’s only been given 6 diazepam but I suppose if she has another 2 tonight and if she’s still as distressed Tuesday I’ll just say I need more access to PRN for her .

❤️❤️❤️

OP I have no advice, I'm sorry, but I can't go past this thread without sending you love and letting you know that my heart hurts for what you are going through.
No matter how you are feeling at any given time, please know in your heart that you are doing a phenomenal job and any choices you make are ok ❤

My mum has Altzheimers and vascular dementia. We worked hard to keep her at home as long as possible, very stressful. She moved into a care home late last summer and we can not believe how well she has settled. It's been the most enormous relief.

Remember the care home environment is designed to help people with dementia, it sounds like you are completely burnt out. Please seek help asap and well done for doing so much, it's just so tough and so sad.

I'm glad you managed to get some sleep OP.

I’ve texted family to let them know re last night . She’s more settled today but still asking about her mum constantly, doesn’t appear to recognise that this is her house and not able to have a conversation really . Wednesday’s hospital appointment can’t come quick enough just now .

You are doing the best that you can and she is lucky to have you. I always felt sorry for the people who had no one to advocate for them. I do know though how awful it can be x

That sounds so very hard @tomissmymum I hope you have a better night tonight. It sounds at the very least that you could do with carers to do a night shift for you to get enough sleep. A decent amount of sleep is the difference between coping and not I think.

Don't be afraid of letting anyone else help. I think you might need to let go a bit. Accept that you can't control all of this. You have your life too. Try not to worry about the future for you too. I know it's scary, terrifying, but somehow life happens and you find a way to live it.

Please pm me if you want to chat.

Back to the same state and off with her carer too (‘who are you and why are you in my house’), NHS 24 asked to speak to mum, nurse came back to me and said no, no, she needs to be admitted asap, she’s extremely agitated and confused and very little idea of where she is and what’s going on . She’s trying to get a doctor out to the house to get mum into hospital tonight .

I hope they can get her admitted for you tonight op. You must be exhausted.

@tomissmymum your mum is so lucky to have you. You're caring, committed and you're tryingsi hard to advocate for her. You're keeping your mum at the front of what you're doing. She's lucky to have you.

I think this stage will be the hardest, because you don't know for certain what the issue is. There's a kind of desperation there, because you can't stop hoping, but that hope is fragile. Or at least, it was for me. The bit before I knew for certain was the worst bit. And you aren't sleeping, you're living it 24hrs - you aren't getting any time to process any of this, partly because it's incomprehensible.

Is any of your family supportive?

I hope your mum gets admitted soon x

Op this is so hard. I remember my df watching his mum deteriorate into someone he didn’t recognise.

One small suggestion (not long term solution but may help calming her): have you seen fidget muffs for dementia patients? Google them. You saying about taking clothes off and on makes me think this might help your mum as she’d be buttoning and unbuttoning and twirling bits etc.

Thinking of you op.

If shes had a big deterioration compared to normal it sounds like there may an infection or reversible cause for this.

The hospital is probably the best place for her right now

She’s been given diazepam at out of hours centre, and told to go home and put her to bed which I’ve done . Doctor said she will be OK in bed . She’s back to her sort of baseline . He said she will probably be kept in hospital on Wed, or go direct to a respite placement . he said I won’t coke much longer and chance she will get agressive . Shes like a wee girl in lots of ways . It’s so enormously hard to know what to do and say . I’m scared to go out anywhere in case things go wrong .

@RunningRainbow thank you ❤️❤️❤️ Family that are aware are supportive yes, I don’t know how much others have been told - I haven’t told any of my dads family at all certainly . someone’s coming with us on Wednesday, I thought I wasn’t going but the doctor tonight is saying they do want me to go so can speak to her consultants .

I keep wondering if I’ve imagined it all or caused it all somehow and if I stop it’ll get better, I don’t know where that’s come from, it’s a horrible feeling . Keep remembering all the times we’ve argued or I’ve let her down and want to cry and cry because now I can’t make it right, although she keeps saying I’m her best friend .

we always wanted to go to York on holiday, she went to see the Charlotte Brontë house years ago and always said she wanted to take me, maybe one day I’ll go myself. .

Hang in there - you're doing the best you can! I'm in a similar position, my mum had a stroke a few years back which has left her weak on her right side. She's also lost her ability to walk due to muscle wastage & keeps getting UTI's which makes her doolally. She's only 69 & I'm 46!
It's bloody hard but you have to keep on at the district nurses & responsive services to get in help. You can't live on 90 mins of sleep each night.
Big hugs coming your way 💕💐

You haven't imagined it or caused it. It is a good thing that they are taking this seriously and are seeking to help you. So many people don't. I'm not sure why you thought you wouldn't have been going on Wed though ? You can get into other issues too eg my mother refused to have certain tests done and they could not force her to do them. Has your Mum done a POA that gives you the right to make decisions financial and medical on her behalf? There is lots of good advice from the Alzheimers Society which will help you gather your thoughts. Best of luck!

Hi OP, how are things today? Hang in there. You're doing a great job.

Im a NHS manager and want you to know that this is an extremely challenging and upsetting experience for both of you. Keep telling all the NHS services how bad she is. She needs to be admitted for treatment and care asap. You cannot do this on your own, in fact no healthcare professional can do it on their own. Its going to require a team of clinicians around the clock. She'll be happier and more settled once they have diagnosed her and started treatment. Being scared constantly and confused is a horrible and exhausting experience for her and you. She needs acute care, you've done amazingly well.

I read that you feel you're failing if she gets admitted. Its actually quite the opposite, you've succeeded in getting her what she needs. There's a point where you need to start being her daughter again - for your own sake or it will make you ill. Intensively caring for someone for a few days to aid recovery is one thing but this situation needs a long term solution.

Well done for how you've coped so far but please for both your sakes, seek and accept a hospital bed ASAP. The sooner shes admitted the better. And Trust me, her being admitted doesn't mean if she gets better she won't come out. In fact the NHS has such pressures on beds right now that its quite the opposite. Please keep us posted and lean on your family to give yourself regular breaks x