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

[Splashing About]

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.

This I relate to. I felt completely isolated and unsupported

 

[annielou]

Thanks for all your replies x
Thank you for the numbers and advice re ringing admiral nurses even though not in my area I didn't realise could just ring. And thanks for the other numbers too x
Either me or my sister may be able to ring someone soon as my sister is coming down again for a weekend in the next week or so.
So I will get to sleep at home a couple of nights and get a few hours a night off. But then it will be back to being with mum 24/7, unless I can arrange a paid carer for a few hours a week or find somewhere and arrange respite. Which I'm scared of doing in case I get it wrong and it upsets mum as she is upset and confused enough bless her.

 

[annielou]

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.

Yes x
Mum isn't self funding so the care home option, though it might be better for mum wasn't offered by SS. Their suggestion was to leave mum alone and allow a crisis to happen as they can't offer that till a crisis happens. They only offered 4 week respite which we have to find and organise ourselves. They only really seemed interested in physical difficulties and dangers rather than emotional and mental difficulties like mums.
The SW told me after sending me mums care assessmemt she had finished with mums case now. If things change we will need to reapply for another care assessment. On the assessment it says mum will be reassessed yearly so thats it till October unless we start again and ask for another assessment.
If mum wants anything else we have to find it and pay for it ourselves which wouldn't be much.

 

[annielou]

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!

Thank you x I hope the tablets are helping xxx

 

[annielou]

My line

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!

❤️

 

[Betenoir71]

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 am in a similar situation as you, my mum just punched me several times in the stomach, she said so was wicked to her when I was only trying to stop her falling on the floor. Christmas was very bad for us too, as I have said elsewhere on this forum, our relatives with dementia pick up on the hectic, frantic atmosphere of Christmas no matter how hard we try to be calm. Mum has thought it was Christmas since late Oct because of the adverts on the TV and worried why we hadn’t bought presents yet.
I understand the complications about respite and carers only too well. SS offer what they can but it doesn’t always match up with need. It’s so hard to discuss respite with someone who thinks there is nothing wrong with them. People tell me not to feel like I am doing a **** job of caring, but it’s hard to accept, nevertheless I will tell you the same - you are doing your absolute best in an impossible situation - please try to get some love and rest wherever you can.

 

[annielou]

I am in a similar situation as you, my mum just punched me several times in the stomach, she said so was wicked to her when I was only trying to stop her falling on the floor. Christmas was very bad for us too, as I have said elsewhere on this forum, our relatives with dementia pick up on the hectic, frantic atmosphere of Christmas no matter how hard we try to be calm. Mum has thought it was Christmas since late Oct because of the adverts on the TV and worried why we hadn’t bought presents yet.
I understand the complications about respite and carers only too well. SS offer what they can but it doesn’t always match up with need. It’s so hard to discuss respite with someone who thinks there is nothing wrong with them. People tell me not to feel like I am doing a **** job of caring, but it’s hard to accept, nevertheless I will tell you the same - you are doing your absolute best in an impossible situation - please try to get some love and rest wherever you can.

oh dear thats awful for you x I hope you aren't hurt x. Though I am sure that even if your not physically hurt, that it hurt emotionaly x
Mum gets verbally aggressive, has kicked my bed, snatched things out of my hand, thrown things near to me a few times and threatened to hit me a few times, but so far hasn't actually physical hit or hurt me. That must be so hard for you. X
Mum panicked constantly thinking she hadnt got presents or cards for people too, and has been and still is confused when christmas was/is.
I hope the hitting stops. You are so not doing a **** job x
Thanks for your reply and good luck with your mum x

 

[TNJJ]

I am in a similar situation as you, my mum just punched me several times in the stomach, she said so was wicked to her when I was only trying to stop her falling on the floor. Christmas was very bad for us too, as I have said elsewhere on this forum, our relatives with dementia pick up on the hectic, frantic atmosphere of Christmas no matter how hard we try to be calm. Mum has thought it was Christmas since late Oct because of the adverts on the TV and worried why we hadn’t bought presents yet.
I understand the complications about respite and carers only too well. SS offer what they can but it doesn’t always match up with need. It’s so hard to discuss respite with someone who thinks there is nothing wrong with them. People tell me not to feel like I am doing a **** job of caring, but it’s hard to accept, nevertheless I will tell you the same - you are doing your absolute best in an impossible situation - please try to get some love and rest wherever you can.

I know it is very hard but I couldn’t tolerate being hit . That is a crisis.

 

[Wifenotcarer]

Just a thought. You say your sister is supportive but lives too far away to be able to help. Perhaps she could help by taking over some of the research re what is available in your area via the internet or phone? A good place to start is by phoning the helpline on this web site. They will have information on what there is near to you. When I phoned I discovered that there was an Alzheimer's support worker in my area and when I contacted her she was a mine of information and support.

Just to say that a year ago I was in a similar situation to you - sleep deprived and at my wits end - except that it was my husband that I was caring for. Fast forward to this Christmas and he is well settled in a great Care Home, just up the road and was able to spend a couple of happy hours with the family in his usual chair in our home on Christmas Day. I enlisted the help of my Daughters to arrange the POA, blue badge, etc, etc. and between us we have managed to reach a still stressful but much improved situation for us all.

 

[annielou]

Just a thought. You say your sister is supportive but lives too far away to be able to help. Perhaps she could help by taking over some of the research re what is available in your area via the internet or phone? A good place to start is by phoning the helpline on this web site. They will have information on what there is near to you. When I phoned I discovered that there was an Alzheimer's support worker in my area and when I contacted her she was a mine of information and support.

Just to say that a year ago I was in a similar situation to you - sleep deprived and at my wits end - except that it was my husband that I was caring for. Fast forward to this Christmas and he is well settled in a great Care Home, just up the road and was able to spend a couple of happy hours with the family in his usual chair in our home on Christmas Day. I enlisted the help of my Daughters to arrange the POA, blue badge, etc, etc. and between us we have managed to reach a still stressful but much improved situation for us all.

Thanks x good idea x
my sister did ring the SS in the first instance and rang a care agency and home about respite a while ago and I'm sure she would ring round for us.
It is hard for me to ring with mum around and I'm not very good on the phone whereas sis is more confident at it so she would probably do a better job too.
Thanks I'll pass on some of the numbers to my sister x
Glad to hear your situation though still stressful has improved x

 

[Alex54]

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.

@annielou I have just been reading your posts on this heading and to say the least, I am shocked by the way social services are responding to your calls for help.
You need to change your approach with social services, ask for a written copy of the care assessment and risk assessment. Make an appointment for social services to come and visit you and your mum. Insist that they should provide four one-hour care visits per day, seven days a week. If they suggest anything less then tell them you will be putting in a written complaint. Talk to the care agencies in your area and select the one that seems the best and tell social services you have everything ready in place to start.
Basically those who shout the loudest get the most, those who are quiet and don't speak get left behind.

 

[Sarasa]

Good idea to get your sister on the case @annielou. I'm useless with phones too, due to my hearing. I much rather deal with things by email or face to face, but phones are often the way that places like to operate.
You do need to go back to social services. It sounded like they wanted to help, but were hampered by the having to have go through the motions of getting carers in first, and when that doesn't work suggest a care home. I know you were worried about your mum coping when you are not there, and what could happen when she is on her own, which is why I think taking up the suggestion of respite is a good one. Not only will that give you distance to make decisions but will enable social services to really see if your mum could cope with carers coming in.
@Betenoir71 , hope you can get something sorted soon. Being hit is a definite line in the sand. With my mum I didn't discuss the move to the care home but just did it.

 

[annielou]

Thanks @Alex54 & @Sarasa xx
I think we do need to start getting on it more and maybe making more fuss.
From what I read and also from what social worker and memory team said I thought theres was not much more they would do other than what SS already have (4week respite a year) but I suppose if we don't ask or try again then nothing will even have chance to change. And if it doesnt at least we've tried
I just need to find the time and energy to do it now.

 

[Bikerbeth]

Thanks @Alex54 & @Sarasa xx
I think we do need to start getting on it more and maybe making more fuss.
From what I read and also from what social worker and memory team said I thought theres was not much more they would do other than what SS already have (4week respite a year) but I suppose if we don't ask or try again then nothing will even have chance to change. And if it doesnt at least we've tried
I just need to find the time and energy to do it now.

Can your sister help with that too? You are so exhausted just caring for your Mum

 

[annielou]

Can your sister help with that too? You are so exhausted just caring for your Mum

Thanks @Bikerbeth I think she will hopefully x
Its been another tough day today, had a few okish hours but some humdinger cr** hours too. Including mum ringing my mobile this morning and this evening to speak to me and even though she could hear it ringing and I showed her my mobile screen saying mum home she still didn't think I was me.
I even answered it this evening when she rang it but that was a mistake as even though I was sat opposite her and she was looking at me she was asking me where i was and why i wasnt with her. Then she rang my husband to ask where i was and even after that she carried on getting upset and confused about things, mixing up timeframes and insisting I am not her daughter Andrea.
After a couple of hours she calmed down and we watched Torvill and Dean story on tv but still mum kept going back every so often to asking where our Andrea is. She also nodded on and off during last hour but has woken up now and after watching news is now talking about watching film that is on till something to one.
She did just ask me if I'm tired to which I said yes and mentioned she had been nodding for last hour so is she tired which she denied and has got comfy on sofa now and turned volume back up now news done and film starting so I think we are now staying up to watch the film.
I hope she gets bored and gives up on it as I'd really like to go to bed soon

 

[Woo2]

Hi @annielou , sorry you have had another hard day . Hope the programme is rubbish and mum goes to bed soon.

 

[annielou]

Hi @annielou , sorry you have had another hard day . Hope the programme is rubbish and mum goes to bed soon.

Thanks x it was but she just switched channels where what women want was starting and now is happily watching it.

 

[annielou]

Ooh yay. she just asked again if 'friend' is tired so i said yes (again) she told me to go 'up' to bed (lives in one bed bungalow so no up) so i told her I sleep in here (living room) so cant go to bed till you do and she said oh ok. Sat for a minute and then said Well i can't understand this film so I can go to bed. Shes turned tv off now and is checking doors locked things unplugged etc while calling me friend. I'm hoping will be a quick routine tonight and not last long.

 

[Woo2]

Switch it off accidentally on purpose Trip the electric , trying to think of ideas . Make her a hot chocolate ? I say to mum “I’m going to bed now “ she panicks about turning off so goes to bed too. Good luck in getting some sleep .

 

[annielou]

Found out mum didnt have any sign of a uti when took her sample to drs last week.
I rang memory team today after yet more hours of constant questioning from mum why our Andie hadnt been and her questioning me and hubby on who we are but not believing us. I rang memory team to see if anything could do about her constant confusion
The memory worker who is monitoring mum now was on leave but the lady who did mums assessment was there so I spoke to her. She said while mum had uti and having treatment their drs wont do anything but once uti cleared if mum still had increased confusion they could do a medication review in case was her medication not suiting her. She suggested I ring drs to see if lab tested mums sample and if was on correct antibiotics or if needed a longer course.
I rang drs surgery and they said that there was actually no sign of infection when they dipped it and they sent it off to lab and nothing showed up there either. It looks like they prescribed her antibiotics before hearing back from hospital lab just in case.
So unless mum had an infection coming on that didnt show up in that sample it looks like her increased confusion is not down to UTI.
I rang memory team back but she had just left. The duty person is going to pass on message tomorrow that mum had no infection so I'm hoping they will be able to arrange a medication review or something.
I really can't live like this much longer. Mum doesnt want me here a lot of time now because I am not Andrea so it is increasing difficult to look after her. Today she had said I'm not the friend either and doesn't know who I am, she wondered if I lived next door but whoever I am she doesnt want me here she wants Andrea!!!