Inmate in mums prison

[annielou]

Thanks @Grannie G & @Rosalind297 good idea, when mums called I'll bob up and tell nurse mums eyesight bit blurry after eye drops so can they guide her back to waiting room.
Day not had good start as bulb in bathroom went and it is the worlds most difficult fitting to get in to. Last time it went it took hubby ages to do and today I just could not get it to come off.
Mum was very vocal about me not bein able to do it and after a few failed attempts and shouty exchanges I admitted defeat and mum got showered by the light of my mobile phone and now so will I.

 

[CardiffGirlInEssex]

@Rosalind297 good luck with the care home stay, hope it helps you and your mum x
@CardiffGirlInEssex thats just what I did. I gradually started doing more and more things to support mum, visiting more, ringing more, took note of appointments, birthdays and events to remember and reminded her, accompanied her to appointments and then took over arranging them, took over managing tableys, drops wheb had take them, took her shopping for years but then started checking what she needed and reminding what to buy and check dates, started reminding and checking she'd paid bills then took over paying them, dealing with her benefits and landlord, reminding when jobs in house needed doing and then often doing them, then the calls and visits got more and more and longer and longer and every day till I was with mum more than I wasn't, she didn't like us doing other things where we werent at home to call if she wanted us, then mum had a few major panics where got really confused and was scared on her own and called us out late at night or very early mornings, we had her to stay with us a couple of times but it was hard as I have stairs and she now wobbly on her legs so the next time I came over to mums to be with her at her house, then the next time it happened I stayed over with her, that was 3 weeks ago and I haven't left. I've slipped down that slippery slope and now seem to be mums carer rather than daughter. Good luck with supporting your dad and getting care for your mum x
@vivcary that sounds scary, dads aggression and your mini stroke. My mum gets quite aggressive and annoyed with things which she directs at me, but its upsetting rather than scary thankfully. I hope you are recovering and doing ok after your mini stroke. It sounds like being in the home is helping your dads aggression and you did the best thing for all of you x

Thank you @annielou and I hope you are able to get the support you and your mum so clearly need. You are an amazing daughter.

 

[annielou]

@Sarasa it was when mum was referred to hospital about her macular holes that I started to realise mums memory wasn't just normal ageing as she would forget what they said and why at hospital and would ring me up and tell me could see black dots or couldn't see properly as if it was first time noticed.

 

[annielou]

@annielou I have been following your post and it saddens me that you are in the exact same place that I am because this is no life.Mum died 8 years ago and she had already expressed concerns over dad's memory. I hadn't noticed but it soon became apparent that dad had a problem but nothing that could not be coped with.

Like you I started to help dad out with little things and spending time with him to try and keep him happy. We lunched 3 times a week and I would stay one night a week to watch TV with him. It was all very manageable to start with and I could still go to work and even have holidays but that changed two years ago when I had to stop dad from driving (long story) but it had to be done.

Dad was diagnosed alzheimers in 2017 and he has gone down fast since then. Shortly after this dad stopped eating and I had to do breakfast and dinner and shopping for him because he became to frail to go out. We continued like this for a while before we found out 18 months ago that dad could not eat because he has advanced oesophageal cancer so lots of appointments, stent fitted and dad could eat again so all well and good although he still had a terminal prognosis. So I carried on with the care the same as before but it was more difficult because dad could only eat certain foods safely. Anyway I left work at about this time because it had become impossible. The only help I got for a long time was from my husband who went on to have 3 heart attacks in 3 months so I was under a lot of stress at that time.

Dad had a hospital stay of 3 weeks back in March with pneumonia followed by a heart attack, 3 falls and a stroke but he recovered and came home. Now it is 24/7 care and like you I see my husband when he takes over for a night or 2 and I then get to see my son although he is very good too and will help me out if needed. I also get some help from my brother who was previously an invisible for a long time but it is not enough and can never be enough. You sound like you have taken on so much alone and it is impossible.

Dad will be 90 next year and we have been told that his cancer has stabilised so he could go on for another 5 years although that is unlikely to be honest but you never know.

What you are doing is unsustainable for any length of time. I spend my days and nights with a very pleasant and witty dad who does not know if it is 4 in the morning or 4 in the evening, he sleeps most of the day, thinks he is very fit when he is in danger of falling and likes to move nick nacks around. He cannot be left at night because he can't find the kitchen or bathroom, he can't even switch the TV on, he shaves 3 times a day, does not wash very well and I could go on and on like this.

I am lucky in that dad is compliant and still funny but this has worn me down and I don't know how my marriage has survived but it has somehow.

This will take it's toll on you if you let it, I don't know the answer but if you don't get help you will become like me, a prisoner in your parents home and that's what it is. I get day release every now and then and I know I should get out and enjoy myself but I don't, I just go home and hide in the house because that is how it has become for me. I am in my 3rd year of full time caring (meaning I got to go home at night) but 24/7 is a killer as far as I am concerned.

Get some help before you end up like me.

Thank you x it is a prison for mum and me. I know I need help with mum but the little that is available mum won't accept and apart from walking away and letting an accident and emergency happen and put mum at risk no more help will be offered. I cant do that and leave her at risk but someday and way I feel today it could well be soon I will probably end up going into a complete meltdown and won't be here for her.
So sorry for you too the situation with your dad sounds terrible and extremly hard and with cancer and falls etc too that just makes it so much harder for you. I'm glad you have a bit help but as you say its not enough is it x wishing you lots of love xx

 

[annielou]

And me, as have a similar story with my mum and husband. Please get some help before it is too late for you, your husband and your marriage- not all marriages survive xx

Thanks Lirene. I will try but so far mum wont accept the little thats been offered x
Love to you and your mum x

 

[annielou]

Well after a very het up, aggravated morning today which had me on edge and shattered before we set off to hospital, the day wasn't too bad and mums appointments went off ok.
She did struggle a bit more than last time to follow instructions at eye appointment and as usual had forgot why there and what happened but it went ok and nothing had changed since last time so thats ok for another 3 months.
We popped back to my house for a quick lunch before going back for scan. Mum kept forgetting going back and why, but was ok about going, though as usual while waiting she thought we'd been waiting ages and kept asking what there for.
As suggested, when nurse came to get mum for ct scan i popped over and asked if they could guide her there and back as her vision was blurry because she'd had drops put in at eye clinic this morning. Which she said they would.
We knew when she was coming back down corridor cos we heard her saying 'don't ask me love I've no idea' apparently the girl, who was a different person to who had taken her down, had asked mum what she'd been for.
She was ok after scan but kept saying she didnt like it and didnt want another and then a few times tonight she said. 'I dont think they should have done that to me today. They didn't ask me if they could' she meant the scan as she didnt know why having one.
I told her gp had asked her wen we first went about her memory if she would have blood tests scan and see memory nurse for more tests and she said she would.
A little brochure for care home near me came today so I Showed it mum and said it was from home she had said last week that she would go look at for respite visit. She read it, commented on a few things like ensuite rooms and hairdresser visit but when I said do you want to go look she shook her head and said no. She didnt want to talk about it and I could tell when tried a little that she wasn't going to today so left it.
We had a power cut from late afternoon which weirdly as we had no tv to watch and only battery operated candles and lights to see with mum was quite ok this afternoon/evening. She usually starts fretting and getting confused about things late afternoon/evening (sundowning) but today she had just started asking confusing questions when the power went off and then she stopped, and for a few hours she was better than normal at that time. I thought she may get more confused by it but no.
We did consider going over to mums house when power went off as her area wasnt affected but I had a roast in oven and the website said power would be back on in 3/4 an hour so we stayed.
It didnt come back on though so making rest of dinner, cutting joint eyc by torchlight was a challenge but we put all the battery candles and battery light on kitchen table and ate there and mum really enjoyed and ate all her dinner.
After dinner and loading dishwasher ready for when power returned we came over to mums. She had just started getting bit mixed up before we left. In the car she asked where hubby was and he said I'm here she said not you love the other one. He asked what other one. Mum said oh I dont know ignore me am daft.
She Was ok on journey back talking about weather and fireworks. When we got to mums Hubby made a jokey comment about being a nice change being in a house with lights and mum asked why? We explained joking because we'd had power cut at ours and mum said 'oh have you love, you should have come here mines on.' Bless her.
She was back to being confused again at hers tonight about where been, what doing tomorrow etc, asking same questions and nodding a bit while watching tele like she normally is in an evening.
Overall its not been too bad of a day and thankfully the aggresion and anxiety from this morning didn't last.

 

[Mydarlingdaughter]

Well after a very het up, aggravated morning today which had me on edge and shattered before we set off to hospital, the day wasn't too bad and mums appointments went off ok.
She did struggle a bit more than last time to follow instructions at eye appointment and as usual had forgot why there and what happened but it went ok and nothing had changed since last time so thats ok for another 3 months.
We popped back to my house for a quick lunch before going back for scan. Mum kept forgetting going back and why, but was ok about going, though as usual while waiting she thought we'd been waiting ages and kept asking what there for.
As suggested, when nurse came to get mum for ct scan i popped over and asked if they could guide her there and back as her vision was blurry because she'd had drops put in at eye clinic this morning. Which she said they would.
We knew when she was coming back down corridor cos we heard her saying 'don't ask me love I've no idea' apparently the girl, who was a different person to who had taken her down, had asked mum what she'd been for.
She was ok after scan but kept saying she didnt like it and didnt want another and then a few times tonight she said. 'I dont think they should have done that to me today. They didn't ask me if they could' she meant the scan as she didnt know why having one.
I told her gp had asked her wen we first went about her memory if she would have blood tests scan and see memory nurse for more tests and she said she would.
A little brochure for care home near me came today so I Showed it mum and said it was from home she had said last week that she would go look at for respite visit. She read it, commented on a few things like ensuite rooms and hairdresser visit but when I said do you want to go look she shook her head and said no. She didnt want to talk about it and I could tell when tried a little that she wasn't going to today so left it.
We had a power cut from late afternoon which weirdly as we had no tv to watch and only battery operated candles and lights to see with mum was quite ok this afternoon/evening. She usually starts fretting and getting confused about things late afternoon/evening (sundowning) but today she had just started asking confusing questions when the power went off and then she stopped, and for a few hours she was better than normal at that time. I thought she may get more confused by it but no.
We did consider going over to mums house when power went off as her area wasnt affected but I had a roast in oven and the website said power would be back on in 3/4 an hour so we stayed.
It didnt come back on though so making rest of dinner, cutting joint eyc by torchlight was a challenge but we put all the battery candles and battery light on kitchen table and ate there and mum really enjoyed and ate all her dinner.
After dinner and loading dishwasher ready for when power returned we came over to mums. She had just started getting bit mixed up before we left. In the car she asked where hubby was and he said I'm here she said not you love the other one. He asked what other one. Mum said oh I dont know ignore me am daft.
She Was ok on journey back talking about weather and fireworks. When we got to mums Hubby made a jokey comment about being a nice change being in a house with lights and mum asked why? We explained joking because we'd had power cut at ours and mum said 'oh have you love, you should have come here mines on.' Bless her.
She was back to being confused again at hers tonight about where been, what doing tomorrow etc, asking same questions and nodding a bit while watching tele like she normally is in an evening.
Overall its not been too bad of a day and thankfully the aggresion and anxiety from this morning didn't last.

 

[annielou]

Just woke up about 20 past 5 and thought I could hear a quiet noise and then realised it was mum sobbing and mumbling to herself. I went in to her bedroom to find her in tears. She said was crying because she doesn't know what to do and she cant do anything anymore.
Poor thing is so upset. I sat and talked to her a little bit, rubbed her arm through quilt, stroked her hair and she quitened for a bit, then we both popped to loo and she said she was going back to bed and so should I but after a minute she started crying again. I went back in gave her a hug, another tissue and tried calm her a bit, but after she said was going to try go sleep again and I came back to my bed she's been snifflling a bit more. Poor mum I hate seeing her upset, I don't know if I'm better to keep going in to her or let her try to calm and go to sleep on her own. I think its mainly just sniffing now but I don't know. I hate thinking she's sat there awake and upset.
She was saying she doesn't know how to do things, and people tell her she should do them on her own but she doesnt know how.
I think thats because we were talking this afternoon about someone from carers service coming to see me tomorrow to tell us whats on offer in local area, if any befrienders or day centres or things she can do with someone else to fill her time so shes not so bored and so I can have a bit of time to myself.
We also talked this aft about OT who came last thursday and is coming back Wednesday to see if mum can make her dinner, so we'd been talking about why coming and what they do and mum said she had forgotten how to use washer and do some other things round house. As well as forgets jobs need doing or thinks she has done them so doesnt do them again.
She always tells me she doesn't want to do them or will do them later when I mention them or offer to do jobs and she can get quite aggressive about it too. And she tells everyone who comes she can and does do things herself.
She said this afternoon she needs help but nobody is helping her. I said if she tells people what she cant do, or things she's not always sure of, they may be able help with it, but if she doesn't tell them or wont take the help when offered they wont make her have help so thats why she doesn't have any. She said she needs help and should stop telling people she's ok and can manage cos she can't. She also said she knows she puts on me and I shouldn't have to give up everything to look after her so she should try do things herself and accept outside help.
It must have stayed with her a bit because this morning in bed when crying she was saying she cant do things and sometimes in night thinks should do something tomorrow but then she forgets and so sometimes sits there ages trying to think what it was needed doing but cant remember because shes useless.She cant do things and people tell her needs do things on her own and shes useless. She says she doesnt like this and doesnt want to be here anymore she just wants to go.
I don't know what to do for her bless her, I hate seeing her so upset. When she gets upset in day its bad enough but its worse at night. There's no distractions like tv or things I can chat about or do to distract her and cheer her up a bit or take her mind off it a bit at night time.

 

[Pete1]

Good Morning @annielou, very tough and heartbreaking to hear that from your Mum, but that feeling of being 'useless' and the frustration that goes with it isn't uncommon, I have seen it in my own experiences - it must be so frightening and visits from external parties have probably made that feeling more acute. Unfortunately your poor Mum probably won't remember these discussions later today and will be back in the same mode of declining help and support (apart from you), you are still in the dementia loop at the moment - I do hope for you both that isn't the case. Do you have any respite in the pipeline - I know you mentioned it a while back?

 

[annielou]

Thanks @Pete1 we were given 4 weeks respite a year by SS although mum not agreed to use it yet.
My sister came down on Saturday and went home Monday lunchtime so I got to sleep at home a couple of nights which was a nice change. We went to see a home near me on Sunday, we took mum in a moment when was a bit less resistant to the idea.
She said she didn't want to go there which we expected, though she did say it wasnt as bad as she thought and wasnt how she thought it would be, that homes are better now than they used to be. Sis told her she didn't have to go to that one but should go to one to give me a rest. We told her there are other ones and can go look at others but she wasn't ready to yet.
I don't think either of us has been back to sleep this morning. I just lay there till half seven and could hear mum moving around and clicking her bedside light and picking her watch up to look at time every so often.
This morning she's asking if she should just go in a home, not for a while but to stay. But thats not an option for mum. She says if ony there a few weeks dont get to know people and then have to come back home to being same.
I'm hoping she'll be in a more truthful and open to help mood when lady from local carers service comes to see me today but so far she's switches back to nothing wrong can do anything mode when people have come

 

[Pete1]

Hi @annielou, it's interesting that your Mum is now thinking about some care support, and positive that it wasn't what she had expected. You say that it's not an option for your Mum to stay in residential care, I wondered why that was if she can no longer live safely at home without 24 hour care from yourself or your sister?

 

[Rosalind297]

she was saying she cant do things and sometimes in night thinks should do something tomorrow but then she forgets and so sometimes sits there ages trying to think what it was needed doing but cant remember because shes useless.She cant do things and people tell her needs do things on her own and shes useless. She says she doesnt like this and doesnt want to be here anymore she just wants to go.
.

This could be me writing this, word for word. Heart-breaking, isn’t it?

Thank goodness you had a couple of nights break at the weekend but absolutely nothing can prepare you or equip you emotionally to deal with a Mum in this state. I know you are going for the gentle approach towards respite but I can’t help feeling you and your sister might have to be a bit more proactive for everyone’s sake.

From someone who has been awake from 4.20am for similar reasons, I send you some strength to get through the day xx

 

[annielou]

Hi @annielou, it's interesting that your Mum is now thinking about some care support, and positive that it wasn't what she had expected. You say that it's not an option for your Mum to stay in residential care, I wondered why that was if she can no longer live safely at home without 24 hour care from yourself or your sister?

I suppose its that I don't think she can live safely alone. Though memory nurse and SW agreed sounds like mum couldn't cope.
As LA would be paying for it SW said mum not eligible to go in home yet. She probably won't be while I'm staying with her. She encouraged me to go home but said she could understand why I didn't as she didn't think mum would cope on her own for long after I left but said it often has to come to a crisis before they can step in.
She mentioned carers coming in for a few short visits a day to help mum get ready for shower and at meal times to make sure ate n took iron tablets and any other medicines she might be given but they would only be short visits and not at night when mum is worse. Mum said she didnt want strangers in her house and as I'm here to do those things we didn't really need them too. So SW didn't put them on care plan as mum didn't want them so its only for the respite.
SW has finished care plan now and says her involvement with mum is now finished, if we want anything else in future we'll need to contact duty officer and ask for another assessment.
Maybe I am being too cautious staying here and letting mum rely on me but she is more and more confused and forgetful, especially afternoons and evenings and I do worry what would happen if I wasnt here.
My sister said she didn't have too bad a night on Saturday (her first night here) and wondered if to try leaving mum alone on Sunday night but then by evening she changed her mind as mum was back to her usual of being really confused and mixed up about where she was, confused about her house, who she was with, she keeps thinking her mum is here now and her brothers and mixing up things and people off the tele with real life. She was back to her usual worrying if doors locked so trying to unlock them to check. Is the heating off, trying to turn it off in wrong place including boiler, is gas off, turning knobs on oven so sis was following her round like I do checking not done something shouldn't and trying to settle her for bed. We don't think thats safe but we can't pay for her a care home so have to rely on SS

 

[annielou]

This could be me writing this, word for word. Heart-breaking, isn’t it?

Thank goodness you had a couple of nights break at the weekend but absolutely nothing can prepare you or equip you emotionally to deal with a Mum in this state. I know you are going for the gentle approach towards respite but I can’t help feeling you and your sister might have to be a bit more proactive for everyone’s sake.

From someone who has been awake from 4.20am for similar reasons, I send you some strength to get through the day xx

Thank you x and same to you x I hope we both and our loved ones get a better night sleep tonight x we can but hop x
I keep hoping as mum is mentioning needing care a bit more often now she will come round to it eventually and hopefully soon, but part of me is also sceptical that she ever will.

 

[canary]

If you are reliant on LA funding, there is a bit of a tick-box exercise. The LA wont even consider residential care until the SW can prove that carers coming in (usually 3 or 4 times a day) are not enough, or there is a crisis.

You may have to be proactive in getting carers in during the day and use a lot of love lies to achieve it, but is might ease the pressure somewhat.

 

[Pete1]

Hi @annielou, I'm not sure that is a correct or safe assessment by the social worker as you a supporting your Mum to prevent a safeguarding incident - it isn't your place of residence, you are staying temporarily to support your Mum as she no longer feels safe and is confused at night. The advice almost seems to be to leave your Mum to it and await the outcome, and from what you have said your Mum can't be left safely and it is clearly putting an immense strain on you that carers coming in a few times a day will not relieve. You probably need to speak with them again expressing that the situation is not sustainable and that for you to move out and leave Mum would be in your opinion a safeguarding issue. The other alternative is to get Mum into the respite placement, then the social services hand would be forced to an extent as they would need to ensure that appropriate arrangements are in place for her to return home safely. Really difficult I do feel for you, your sister and Mum.

 

[annielou]

Thanks for your replies xx
@canary yes I think thats more or less what SW said about tick boxes to do first.
@Pete1 yes advice is to leave mum and see what happens and let a crisis happen which to me is endangering mum and or others as well as leaving mum distressed which is why I'm still here.
Mum asked SW what meant by a crisis and she said. Well if you wemt out wandering and police picked you up in middle of night or you set kitchen on fire or your neighbours reported you doing something threatening or dangerous to you. So it sounds like a pretty dangerous thing to leave to happen.
Someone else suggested to hubby that if mum wasnt safe on her own and went into respite to ask home staff if thought needed full time care and tell SW couldn't stay with her when came out of respite and she couldn't be alone either.
Mum has been quite upset a couple of times today about me giving things up to stay with her and when lady from carers service came to see me at mums today mum told her I should have time for me and she shouldn't rely on me all the time but was scared she couldn't manage on her own so she might look at the leaflets she brought me on befrienders, companions and try it or a day centre.
Its not a great solution as still wouldn't help on a night or for most of time but if I could get a few hours off regularly it would help a bit and may get mum used to accepting people coming in home to help at some point.
Whether she actually will is another thing but its first time anyone's come who mum hasn't put on a front of I'm ok and don't need anyones help I got our andie n don't want anyone else.

 

[Dimpsy]

It sounds as if the little seed you planted has started to grow, if your mum is starting to think about letting "outsider's" into her circle, besides close family, that is a really positive step forward.

It's all baby steps at the moment but the more outside contact she has the better for all of you and if you can persuade her into daycare, that would give you both time away from each other.

What have we come to as a nation, if the only way your mum's plight can be bought to the attention of social services is by exploiting her vulnerability to a point of crisis.

I'm with you on that one @annielou; no way would I leave my mum, knowing full well that she is and would be unable to cope on her own, to the point of endangering herself, just to flag up her frailties to the powers that be.

There would be an outcry to leave a child in a similar situation, with calls of child abuse; I would suggest that to knowingly place a person with dementia into a potentially at risk situation is no less abusive and morally reprehensible.

 

[Pete1]

Hi @annielou, I do hope you can get some support arranged soon, and respite care looks like the way to go, and it may help to provide 'professional' support the assertion that Mum needs 24 hour care and support (although I would always argue that you living with you Mum 24/7 has the most accurate picture of Mum's needs).

@Dimpsy is correct, and I agree, there is no way you are going to pack up, leave your vulnerable Mum to her own devices and go home, but what a position you and your family have been put in - and how sustainable is the current situation? It does sound like a tick box exercise (suggest 3 visit home care...tick, respite if required...tick) that on review by the SW's Manager would pass muster, but I can assure you there is no way they would put their name to the advice to leave Mum, who is clearly a risk, to wait for an incident that (from what you have said) is likely to happen if she is left overnight on her own. Might be worth asking for a copy of the assessment to see if the risks have been appropriately defined and documented i.e. it is accurate.

Stay strong and keep posting.

 

[canary]

Its a catch 22 situation. All the while you are there she is not considered "at risk" and because she is not at risk, SS wont offer help. I dont suggest that you pack your bags and leave, but perhaps you could step back in small ways. Get in carers and look at day care or respite. Perhaps you could make sure that the house is safe (switch off the oven etc) and install an alarm on the front door which will alert you if your mum opens it, so that there is unlikely to be a crisis, but might show that your mum cant cope.