Who am I ? I won't know myself soon!!!

[Bikerbeth]

I am so sorry to hear that you did not get the Christmas you (and your husband) so wanted. You should not feel bad at all. You have given so much over the last months to look after your Mum in her own home. You deserve to ‘moan’ and you are a real caring daughter doing your best for your Mum. I could not have done what you have. I am not surprised you are tired and weepy. It must be ages since you had a good night sleep. It won’t be easy but please take up that offer of Respite so you can have a break to enable you to step back and think. Meanwhile sending you virtual hugs. You are an amazing person. Please remember that

 

[annielou]

Thank you @Woohoo & @Bikerbeth xx
Thank you to everyone who has posted support today I really appreciate it x

 

[Bikerbeth]

Thank you @Woohoo & @Bikerbeth xx
Thank you to everyone who has posted support today I really appreciate it x

Now try and get some sleep

 

[Sarasa]

@annielou when the social services offered you respite a while ago they could see what your mum needed, even if it was not what she and you wanted. Please organise some respite to give yourself a chance to see what would be best for her. Trying to do this all by yourself is going to end up making you Ill and not helping either of you, not to mention your husband.

 

[Bikerbeth]

Hi @annielou - how has it gone today? I hope you got some sleep

 

[annielou]

Hi @annielou - how has it gone today? I hope you got some sleep

Not great unfortunately. Mum is still insisting I'm the friend and getting angry about me not being her daughter and constantly questioning me and hubby about it.
I had about three hours solid last night before bed and then it took her an hour to get in bed and stop getting up asking if this door locked and were plugs off ,then insisting I unplugged them.
Then after a ten minute pause where I thought she had finally settled so I got in bed she came back in again asking was I sure I unplugged everything. I had to get out of my bed and turn light on to show her they were unplugged, but then she noticed electric fire was unplugged.
So she set off worrying about it being unplugged, weirdly the fire has been unplugged and wire in same place on floor next to it for months and shes not used it for over a year but she said it hadnt and it was always plugged in. She was worried it was unplugged and electric would be coming out. Bit odd as she wasn't happy till tv etc was unplugged but then not happy that fire was. Nothing I said calmed her and it ended in her shouting and swearing at me about unplugging the electric fire and making us unsafe and I was always telling her off and I should go home because she hadnt asked me to stay. Then she finally went to bed, it was half twelve by this time and it took me a while to go to sleep.
Mum woke me up when she got up to go to loo about five am and she was just standing in doorway looking at me for a while so I asked whats a matter? and she said I didnt know if you were really there i thought i'd imagined you.
It took me awhile to get back to sleep again after she went back to bed and then she had another loo trip bout seven which woke me up again and so I was mostly awake from then till got up about eight.
Today has been same sort of thing mixing me up with friend a lot of time and getting annoyed and not believing I'm her daughter again.
This morning she was totally mixed up, she was phoning my house to talk to me even though I was sat opposite her at her house, she was asking where i live and trying to catch me out to prove I'm not me. She rang my mobile which she could hear ring in my hand, I showed her my screen saying mum home on it but she still wouldn't believe I was her daughter Andrea.
We went to my house at lunchtime but she still thought we were friend and hubby. After lunch she nodded for most of next hour and then I put a couple of dvds on and for a few hours this afternoon we watched them and she wasn't bad. She still called me friend a few times, lost plots of films sometimes and made some random mixed up statements about things at times but was calm and seemed happy enough.
She was the same for first hour this evening after hubby dropped me and mum back at her house, a bit mixed up but happy enough and still quite calm.
But then about nine oclock she started asking about our Andie again and trying to ring me and just wouldn't believe I am her. By 11 oclock her questions were getting really muddled and besides mixing me up with friend she was also mixing bits in from the film on tv we had on.
I couldnt really understand what she was asking me by then and I ended up crying a bit and saying I didn't know how to answer as I didnt know what she was asking me. She said she didn't either she just wanted to work out what was happening cos she didnt know. She said she was sorry she didnt know who I was and she couldn't figure it out, she didnt even know who she was and was sorry she upset me.
Then she started on about the fire plug again so we had ten minutes of that again before she went to get ready for bed. She didnt take too long staying in bed tonight, she was quiet by twelve so I should really have tried to get to sleep too. I was textin hubby at home for a while and then came back on here as even though I'm shattered I felt too awake to sleep so I've ended up typing this epic long post
Think I should go try to sleep and stop rambling and whining now though.
Thanks for asking how things were today and sorry for the long ramble.

 

[Woo2]

@annielou , you aren’t whining and rambling at all. I take comfort from reading your posts ,I bet others do too as we realise we aren’t alone and others are going through similar if not the same things so thank you. Hope you get some much needed sleep .

 

[Bikerbeth]

@annielou, certainly not whining and no need to apologise. You are going through such a terrible (understatement) time with very little sleep. Your Mum thinking you are the friend is an extra emotional burden.
Easy to say but please look at that respite option as soon as you can. Virtual hugs to you

 

[Vitesse]

Thank you for your replies, they mean a lot xxx
I felt bad and moany for ranting and guilty, very guilty and totally inadequate as a carer and a daughter.
I am so tired I just want to go sleep and not wake up. But I can't do that cos what will happen to mum then.
Sh** as I am I'm all she's got and she can't cope on her own.
My sister can't look after mum all the time because she's miles away and she has her own responsibilities and problems and mums brothers cant help her they too have their own problems and aren't really close.
SS didn't offer much help other than respite which I could use although I'm scared what it will be like for her and us. I don't know what to look for to find a good place as have to arrange it ourselves even finding homes and getting there to look round is awkward as I'm with mum all the time.
There was no carer visits put on the care plan SW said because mum didn't want them and I was there so no point. They would only offer 3 1/2 hour visits anyway which wouldn't help me.
Hubby and I can't afford to pay for private carers so our only option is for mum to pay for them. She can't afford to pay much for them either as she only has pension and pension credit and little savings. She doesn't want them so probably won't agree to pay for them and I feel like I'd be doing wrong by paying for them with her money but I did say to mum a while ago she would have to accept outside help and after she went back on trying a day centre I told her it would have be a carer at her home. I am hoping to arrange that in new year but mum will have to pay for it and can only afford a couple of hours a week if I can arrange it and it won't give me much time away. It won't mean I can go home overnight or do much at all as it takes about an hour one way on two buses between mum and my house so mainly I'd be paying to travel. I can't decide when to arrange the time as I think it will have to be same time every week. Silly as it sounds even deciding and arranging that seems too hard at the moment. I'm pathetic.

I know exactly how you feel. I care for my husband and I am the sole carer. In April 2018 I got to the stage where I was at the end of my tether, in tears the whole time. I contacted our GP and he referred my husband to the local older people’s Mental Health team. It didn’t start very well, as the doctor told him he must stop driving!! We were given appointments about every two months, and she changed his medication to Memantine. It was still pretty ropey at home and we would have some better days, and then some bad ones. In 2019 things have gradually deteriorated again, and he became agitated, delusional, verbally aggressive and I reached the point of being suicidal. The Mental health team take my situation very seriously, and we go regularly to see them. I have been given anti depressants (which I resisted for a long time) and Ken has RIsperidone to reduce his anxiety.
What I’m trying to say is, don’t try and battle on alone. The medical team with try and fob you off, because they are busy, or don’t even know what to do. But your situation is dire and even if you need to sit on their doorstep every morning, make sure your GP understands what is going on. Being brave and quiet doesn’t get you anywhere! Make a fuss and get them to listen They will eventually help you and your Mum!

 

[annielou]

Thank you for your replies @Woohoo @Bikerbeth @Vitesse xxx
I was going to try and edit my post to try make it shorter and less rambly this morning, I'm always embarrassed by how long they are. My mum used to say my motto should be why use one word when I can use a dozen.
I agree it does help reading other peoples posts, it helps to know we're not alone and when I read something positive it cheers me up. Last night I read a few posts about people who had good days at Christmas and that made me smile before I went to sleep.
Its such a shame there are so many struggles with this though, for the person with dementia and the carers and the help out there is so hard to find.
I wish there was a person you could go to who asked what you were struggling with and suggested how to deal with it and asked what help you needed and told you where to go to get it instead of us having to find out ourselves. Also every area should be the same as sometimes I read/hear about things that arent available in my area.
You're given a diagnosis and maybe tablets and some leaflets about dementia charities and then sent off. How do I know how to cope with a person with dementia, whats right or wrong thing to do or what to look out for? Books and the internet seem to be the only place to get help and I like a lot of carers don't have much time to read things properly. How do people without the internet cope? I find it all so frustrating and get quite annoyed about it.

 

[Woo2]

Have you spoken to Admiral Nurse @annielou ? My mum moved in with us the night my dad died and we were thrown in , a couple of weeks later I felt all at sea so I rang the community mental health team and spoke to them and they suggested Admiral Nurse, lady I spoke to was fantastic , very nice , helpful and knowledgeable and gave me a lot of good ideas but also it was nice to just have someone to listen and understand . We are all def left to it, mum sees a dementia navigator once a year I never realised just how much you are left to do get on with it , it’s appalling . I feel very strongly about the injustices of Dementia . Any other medical condition there seems to be a while network of support . Hope today is more settled and peaceful .

 

[annielou]

Have you spoken to Admiral Nurse @annielou ? My mum moved in with us the night my dad died and we were thrown in , a couple of weeks later I felt all at sea so I rang the community mental health team and spoke to them and they suggested Admiral Nurse, lady I spoke to was fantastic , very nice , helpful and knowledgeable and gave me a lot of good ideas but also it was nice to just have someone to listen and understand . We are all def left to it, mum sees a dementia navigator once a year I never realised just how much you are left to do get on with it , it’s appalling . I feel very strongly about the injustices of Dementia . Any other medical condition there seems to be a while network of support . Hope today is more settled and peaceful .

I did a postcode search thing for admiral nurses a little while ago but they're not in my town.
I find myself getting really annoyed about lack of support, not just for me and mum but some of the posts from others on here make me so mad and sad.
When my aunt had cancer she had a mcmillan nurse who she said was fantastic, gave her lots of advice, practical and emotional and told her who and where to contact for all sorts of different things.
I don't really have time tondo anything, or know what to do about lack of support and clear guidance for people living with dementia but I wish I did

 

[Pete1]

I don't really have time tondo anything, or know what to do about lack of support and clear guidance for people living with dementia but I wish I did

Hi @annielou, I've just caught up with your posts. It is disgraceful that you have been left to deal with this with minimal offer of 'support'. It is crystal clear that your Mum now requires 24 hour care for her own safety and well-being. No single 'professional' carer would be able to meet your Mum's increasing needs with the sleep deprivation you are experiencing, and they would not have the emotional distress that you will inevitably feel as your Mum's confusion of your identity continues (and seems to be getting worse). It must be soul destroying to witness. When you are exhausted and in the eye of the storm there seems no way out, I totally understand that. I do agree with the other good people that have responded to your posts - you need respite care to enable you to determine the way forward. Perhaps you can contact Social Services again and explain you are have reached your breaking point and will have to walk away (to get some action) - and they would then need to instigate emergency care. You simply can't continue as you are, you are heading towards a breakdown (physical and probably mental). I wish you all the best.

 

[canary]

There are no Admiral Nurses where I am either, but I phoned them up and got to speak to one who was very experienced and helpful, so you could always phone them.

You really do need a break to get your head round everything that has been happening.
I am thinking that your mum would be less stressed and happier in a care home.
What are your lines in the sand?

 

[Duggies-girl]

I fear for you @annielou What you are coping with is clearly too much for one person. I have dad for 24/7 but he is very easy to be with. I could not cope with your mum I am sorry to say so but it would be too much for me.

Please try to get some respite.

 

[Shedrech]

hi @annielou
I do agree that it may help you to talk with someone in real time the nurses/advisors on the helplines have a lot of knowledge of how to get help


Admiral Nurses helpline
https://www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/

and National Dementia Helpline
https://www.alzheimers.org.uk/get-support/national-dementia-helpline

 

[annielou]

What are your lines in the sand?

I'm not sure I've got any, I'd not really thought about it, just ended up taking on more as mum needed. I think unless SS or someone offers something different, which I cant see happening as no one seems bothered, I'll just carry on until I can't cope anymore. Which may not be long the way I feel lately and even then while ever I'm still standing I suppose I'll be left to it.
Other than the 4 week respite and paying for a carer for a few hours a week I think this is my lot now as I can't just leave her on her own.

 

[TNJJ]

I'm not sure I've got any, I'd not really thought about it, just ended up taking on more as mum needed. I think unless SS or someone offers something different, which I cant see happening as no one seems bothered, I'll just carry on until I can't cope anymore. Which may not be long the way I feel lately and even then while ever I'm still standing I suppose I'll be left to it.
Other than the 4 week respite and paying for a carer for a few hours a week I think this is my lot now.

If your mum is self funding you can organise it yourself .Maybe more hours for the carer.

 

[TNJJ]

My line

I'm not sure I've got any, I'd not really thought about it, just ended up taking on more as mum needed. I think unless SS or someone offers something different, which I cant see happening as no one seems bothered, I'll just carry on until I can't cope anymore. Which may not be long the way I feel lately and even then while ever I'm still standing I suppose I'll be left to it.
Other than the 4 week respite and paying for a carer for a few hours a week I think this is my lot now as I can't just leave her on her own.

My line in the sand was when I felt suicidal and couldn’t sleep at night for worry. That’s when the carers took on more..For my own sanity!

 

[canary]

If your mum is self-funding then everyone will just leave you to get on with it, but if you just keep on taking on more and more eventually you will brake under it all.
Youve read my thread UTIs seizures and hospital. Please dont let that happen to you.