Sorry, but when will this ever end!

[VonVee]

Hi everyone

It’s 01.29am, and I’m on here writing this, because I’m wound up like a coil and I cant get to sleep, all because my mother is playing silly games tonight, refusing point blank to go to bed, refusing my help, and then violently attacking me by digging her nails into my skin, when I put my hands on her, she’s convinced herself that it’s day time, (it’s not) and she’s waiting for a taxi to arrive to take her home to Harrow, ( we live in Dorset) nothing I say or do in that type of situation is good enough, all the while I’m biting my lip very hard I hasten to add, and I’m trying extremely hard not to lose it, even when she got to the point, where she flung herself on the floor and she’s shouting for help, as I’m standing there, looking down and thinking ***! it looks like I’ve snapped and I’ve put her on the floor, ( I haven’t) ( does/has anyone experienced this) so she didn’t have to do what I wanted her to do, which is go to bloody bed, she’s had her meds, they’ll click in soon and she’ll be drowsy, which may result in injuries, if she’s walking and wandering about in the dark.

I’m so sorry sorry for the rant, but I’m not in the financial position to put her into a much needed home, I can’t even afford respite, which costs the earth in Dorset, second expensive county to London for elderly health care costs, thanks very much, if I could tho, I would, in a heart beat, after 4 years of doing this .... I’ve had enough and I’m ready to throw in the towel, but it’s not that easy, and it’s impossible for me to do so, ( I’ve looked intensely into it) and financially, I’m screwed! Even the social workers can’t offer me an alternative, so I’m stuck.

I’m just so sick of this **** day in day out, week after week, month after month, I’m at the end of my tether, and sometimes I feel, like I actually hate her, the person she’s become, all down to good ole dementia, it sucks... sometimes I really resent her, and I can’t stand her, and I never ever thought I’d be feeling like that about my mother.

 

[Alison N]

Hi everyone

It’s 01.29am, and I’m on here writing this, because I’m wound up like a coil and I cant get to sleep, all because my mother is playing silly games tonight, refusing point blank to go to bed, refusing my help, and then violently attacking me by digging her nails into my skin, when I put my hands on her, she’s convinced herself that it’s day time, (it’s not) and she’s waiting for a taxi to arrive to take her home to Harrow, ( we live in Dorset) nothing I say or do in that type of situation is good enough, all the while I’m biting my lip very hard I hasten to add, and I’m trying extremely hard not to lose it, even when she got to the point, where she flung herself on the floor and she’s shouting for help, as I’m standing there, looking down and thinking ***! it looks like I’ve snapped and I’ve put her on the floor, ( I haven’t) ( does/has anyone experienced this) so she didn’t have to do what I wanted her to do, which is go to bloody bed, she’s had her meds, they’ll click in soon and she’ll be drowsy, which may result in injuries, if she’s walking and wandering about in the dark.

I’m so sorry sorry for the rant, but I’m not in the financial position to put her into a much needed home, I can’t even afford respite, which costs the earth in Dorset, second expensive county to London for elderly health care costs, thanks very much, if I could tho, I would, in a heart beat, after 4 years of doing this .... I’ve had enough and I’m ready to throw in the towel, but it’s not that easy, and it’s impossible for me to do so, ( I’ve looked intensely into it) and financially, I’m screwed! Even the social workers can’t offer me an alternative, so I’m stuck.

I’m just so sick of this **** day in day out, week after week, month after month, I’m at the end of my tether, and sometimes I feel, like I actually hate her, the person she’s become, all down to good ole dementia, it sucks... sometimes I really resent her, and I can’t stand her, and I never ever thought I’d be feeling like that about my mother.

 

[Alison N]

I am so sorry for what you are going through and I feel your pain as I am in a similar situation but not as bad as yours it seems. The council found respite for me where I only had to pay £93 a week and they would pay the rest. This was the assessed charge after they had given OH a financial assessment. I don’t have a lot of experience in working my way through the minefield of care but there are others on here that do and I know they will come forward to help. You need help from Adult Social Care, they can’t just leave you to get on with it

 

[GinnyJan]

VonVee, I'm so sorry you're going through this awful experience and that it's been going on for so long. I really understand those feelings of 'hatred' at times, and the guilt that follows them.
There's not a lot anyone can say to make it easier but maybe a (((hug))) will help, even though it's only a virtual one xx

 

[Tin]

So sorry you are going through this and I do understand those nights and how you are feeling towards your mother. Mum and I are now worlds apart and the only way I can cope is to be in a different room from her most of the time. She now has the dining room and I lock myself away in either the sitting room or my bedroom. Although she goes to bed ok, she is forever moving her body around and I can hear her, when I go in to check, her legs are up in the air, bedding all over the place except on her. Tried sleeping pills again but no success. Placing her in a care home is probably going to be the only answer for me, especially if this present behaviour continues long term. Respite has been tried and failed here, 2 days into a week stay and I was called to go and try to calm her down, because she was upsetting the other residents and it seemed like she had purposely thrown herself onto the floor!

Hope you got some sleep last night.

 

[Grannie G]

Send a copy of your post to Social Service @VonVee and let them see how much full time caring is affecting you. You are not legally bound to accept responsibility for your mother and her care is now becoming detrimental to your own health.

There will be a way out if you ask and keep asking.

 

[LadyA]

VonVee, I'm sorry you are feeling so utterly exhausted by it all. It's really not surprising. And I'm sure many of us have, at times, got to the stage where the only thing that kept us going was the thought that it couldn't possibly go on for ever. Of course, that's a double edged sword, isn't it? There will be an end to it, but....
I wish I could suggest something helpful. You really do need sleep. In the end, I gave up getting up with my husband every time. I made sure there was enough light, that the place was warm, that he couldn't get into anything dangerous, and couldn't get out of the house, and left him off. Of course, we lived in a bungalow, so he couldn't fall down stairs or anything, so that was easier.

Could you leave your mum to herself in the house for an hour or two while you sleep?

 

[Shedrech]

hello @VonVee
I just wanted to pick up on one part of your post, in the hope that it may help, in case you are not aware of this:
you say YOU are not in a position to pay for a care home - any fees for your mum's care should come only from her finances, so you should not need to pay for her care
should she move into a care home, if she has savings below £ 23250 the LA will at least part fund her care with your mum paying any pension(s) and income - if her savings are below £14250 the LA take on the paying of fees with your mum paying all her income and losing her Attendance Allowance, leaving her with a personal expense allowance of around £25 a week
I appreciate that this would require an assessment of her care needs by the LA Adult Services and then a financial assessment - and the LA may suggest a care home that isn't the family's first choice (at that point family can choose to pay a top up to the LA fees to meet the fees of a particular home) - maybe it is time to have LA involvement

 

[Duggies-girl]

Hi everyone

It’s 01.29am, and I’m on here writing this, because I’m wound up like a coil and I cant get to sleep, all because my mother is playing silly games tonight, refusing point blank to go to bed, refusing my help, and then violently attacking me by digging her nails into my skin, when I put my hands on her, she’s convinced herself that it’s day time, (it’s not) and she’s waiting for a taxi to arrive to take her home to Harrow, ( we live in Dorset) nothing I say or do in that type of situation is good enough, all the while I’m biting my lip very hard I hasten to add, and I’m trying extremely hard not to lose it, even when she got to the point, where she flung herself on the floor and she’s shouting for help, as I’m standing there, looking down and thinking ***! it looks like I’ve snapped and I’ve put her on the floor, ( I haven’t) ( does/has anyone experienced this) so she didn’t have to do what I wanted her to do, which is go to bloody bed, she’s had her meds, they’ll click in soon and she’ll be drowsy, which may result in injuries, if she’s walking and wandering about in the dark.

I’m so sorry sorry for the rant, but I’m not in the financial position to put her into a much needed home, I can’t even afford respite, which costs the earth in Dorset, second expensive county to London for elderly health care costs, thanks very much, if I could tho, I would, in a heart beat, after 4 years of doing this .... I’ve had enough and I’m ready to throw in the towel, but it’s not that easy, and it’s impossible for me to do so, ( I’ve looked intensely into it) and financially, I’m screwed! Even the social workers can’t offer me an alternative, so I’m stuck.

I’m just so sick of this **** day in day out, week after week, month after month, I’m at the end of my tether, and sometimes I feel, like I actually hate her, the person she’s become, all down to good ole dementia, it sucks... sometimes I really resent her, and I can’t stand her, and I never ever thought I’d be feeling like that about my mother.

Hi @VonVee so sorry you find yourself in this position it sounds unbearable. I don't understand why you think that you would have to pay for your mother's care as she has to pay for her own care. I think you have probably come to the end of your tether and your mum really needs to go into care now. You can only do so much.

Is it because you live in your mother's house and are worried that you may find yourself homeless. I believe that if you are over sixty years old then this would not happen, you would retain the right to live there. Don't know if this is your situation but it is just a thought. Hugs to you.

 

[VonVee]

Hi Duggies Girl

I am only 45 hon, the reasons why I think I will have to pay for mums care, is that I’ve had literally loads of financial assessments done in the last 4 years, and there’s no way out of this one financial wise, my mum lives with me in my house, she can’t live on her own anymore, so I care for her 24/7,
My dad left a heavy pension, and it passed on to mum, after he diesd, plus she gets state pension and dvla, which goes way over the threshold, and where not eligible for any help at all, so yeah, I’m stuck with this life until she dies basically... last night, she scratched my hand, and bent my thump back so far that I thought it was discolated, and it was throbbing all night long, so sleep is over rated.. lol xx

Hi @VonVee so sorry you find yourself in this position it sounds unbearable. I don't understand why you think that you would have to pay for your mother's care as she has to pay for her own care. I think you have probably come to the end of your tether and your mum really needs to go into care now. You can only do so much.

Is it because you live in your mother's house and are worried that you may find yourself homeless. I believe that if you are over sixty years old then this would not happen, you would retain the right to live there. Don't know if this is your situation but it is just a thought. Hugs to you.

 

[Duggies-girl]

Hi Duggies Girl

I am only 45 hon, the reasons why I think I will have to pay for mums care, is that I’ve had literally loads of financial assessments done in the last 4 years, and there’s no way out of this one financial wise, my mum lives with me in my house, she can’t live on her own anymore, so I care for her 24/7,
My dad left a heavy pension, and it passed on to mum, after he diesd, plus she gets state pension and dvla, which goes way over the threshold, and where not eligible for any help at all, so yeah, I’m stuck with this life until she dies basically... last night, she scratched my hand, and bent my thump back so far that I thought it was discolated, and it was throbbing all night long, so sleep is over rated.. lol xx

One thing I do know is that you do not have to pay for your mums care. Also I do not understand why you have had to have financial assessments. You money and your home are separate from your mums.

Your mum should have been financially assessed and if she is over the threshold then she pays until she is under the threshold unless I am completely wrong.

In fact (and I know this sounds hard) you are not responsible for your mums care at all. Let your mum pay for it if she has her own money before you suffer a breakdown or tell the local authority that you cannot do it anymore and then they will have to step in. If she needs to go into a care home then so be it. They will take her pensions, DVLA and whatever but that is better than the life you are leading now.

 

[kindred]

Hi Duggies Girl

I am only 45 hon, the reasons why I think I will have to pay for mums care, is that I’ve had literally loads of financial assessments done in the last 4 years, and there’s no way out of this one financial wise, my mum lives with me in my house, she can’t live on her own anymore, so I care for her 24/7,
My dad left a heavy pension, and it passed on to mum, after he diesd, plus she gets state pension and dvla, which goes way over the threshold, and where not eligible for any help at all, so yeah, I’m stuck with this life until she dies basically... last night, she scratched my hand, and bent my thump back so far that I thought it was discolated, and it was throbbing all night long, so sleep is over rated.. lol xx

Look, you can't go on like this, you musn't go on like this. If your dad left a heavy pension etc, then would this equate to care home fees, how far does it fall short? Please remember we do NOT have by law to care for another adult and although I am the world's most faithful human being, I am not sure I could do what you are sweetheart. Not like this and feeling like this. Please look again into that financial situation. Are there any social workers who could specifically help you with this? Sending all thoughts and solidarity. My life has been dreadful like this and I thought there was no way out but death of one of us. But after a near fatal accident and admission to a and e for husband, they could see how broken I was, how impossible it was for me to go on alone like I was and husband admitted to care home. OK, I pay full amount, but it was that or, well, I could not have gone on, if see what mean. Please take action now, you are young woman. Kindred.

 

[canary]

You do not have to pay any of it. If you are living in your own home (rather than your mums) then the house is not taken into consideration at all. It would only factor in if it were her house and you are living in it.

Any care home fees come out of her income and savings. Once her saving get down to £25,000 (or thereabouts) the local authority will start to pay for the fees and once she is down to £14,000 savings then the LA will be paying their maximum.
When you have had the financial assessments. You havent been giving them your details and the assessors have been thinking that they are her details have you?

You really cant go on any longer, your mum really needs to be in a home from the sound of it.

 

[myss]

I wish I could suggest something helpful. You really do need sleep. In the end, I gave up getting up with my husband every time. I made sure there was enough light, that the place was warm, that he couldn't get into anything dangerous, and couldn't get out of the house, and left him off. Of course, we lived in a bungalow, so he couldn't fall down stairs or anything, so that was easier.

Could you leave your mum to herself in the house for an hour or two while you sleep?

If it is possible Vonvee, this is a good consideration. I used to busy myself correcting my dad and overlooking nearly every move he did to ensure he was OK, wasn't putting stuff in wrong place, etc, but it was exhausting, plus I reckon sometimes I made things a little worse by constantly reminding or telling him things over and over to ensure he hadn't forgotten. Sometimes it's needed, sometimes it's not. But now as long as he's safe inside his home and whatever that was done wrong can be put easily put right, we let him get on with it now.

Even the times when he insists on going home, the time taken up trying to convince him that he is there already was too much and one time we said 'ok then, let's go to where you think home is' and by the time he got outside his neighbour's house, he recognised the street furniture and realise he was home. Aggravation averted.

You do not have to pay any of it. If you are living in your own home (rather than your mums) then the house is not taken into consideration at all. It would only factor in if it were her house and you are living in it.

Any care home fees come out of her income and savings. Once her saving get down to £25,000 (or thereabouts) the local authority will start to pay for the fees and once she is down to £14,000 savings then the LA will be paying their maximum.
When you have had the financial assessments. You havent been giving them your details and the assessors have been thinking that they are her details have you?

You really cant go on any longer, your mum really needs to be in a home from the sound of it.

Definitelyy agree with this - it's your house and should only be taken into consideration if you're going into the care home! All the best to you @VonVee

 

[Hazara8]

Hi everyone

It’s 01.29am, and I’m on here writing this, because I’m wound up like a coil and I cant get to sleep, all because my mother is playing silly games tonight, refusing point blank to go to bed, refusing my help, and then violently attacking me by digging her nails into my skin, when I put my hands on her, she’s convinced herself that it’s day time, (it’s not) and she’s waiting for a taxi to arrive to take her home to Harrow, ( we live in Dorset) nothing I say or do in that type of situation is good enough, all the while I’m biting my lip very hard I hasten to add, and I’m trying extremely hard not to lose it, even when she got to the point, where she flung herself on the floor and she’s shouting for help, as I’m standing there, looking down and thinking ***! it looks like I’ve snapped and I’ve put her on the floor, ( I haven’t) ( does/has anyone experienced this) so she didn’t have to do what I wanted her to do, which is go to bloody bed, she’s had her meds, they’ll click in soon and she’ll be drowsy, which may result in injuries, if she’s walking and wandering about in the dark.

I’m so sorry sorry for the rant, but I’m not in the financial position to put her into a much needed home, I can’t even afford respite, which costs the earth in Dorset, second expensive county to London for elderly health care costs, thanks very much, if I could tho, I would, in a heart beat, after 4 years of doing this .... I’ve had enough and I’m ready to throw in the towel, but it’s not that easy, and it’s impossible for me to do so, ( I’ve looked intensely into it) and financially, I’m screwed! Even the social workers can’t offer me an alternative, so I’m stuck.

I’m just so sick of this **** day in day out, week after week, month after month, I’m at the end of my tether, and sometimes I feel, like I actually hate her, the person she’s become, all down to good ole dementia, it sucks... sometimes I really resent her, and I can’t stand her, and I never ever thought I’d be feeling like that about my mother.

It seems to me that you are entitled to a Carers Assessment as a matter of urgency. Your post illustrates that need without question. You cite a situation which reminds me of my own, some years past. I found 'emergency respite', before the situation claimed my own mental health, which was a close call. I would certainly approach the GP in this respect and outline the 'facts' as they stand. Once you start to feel any resentment (completely understood I must add) towards a loved one, simply due to the sheer 'antagonism' of dementia, then that is quite obviously a time to act and to be open to help. That is your right.

With good wishes.

 

[Lindy50]

Hi @VonVee
I can only agree with everyone else. Only your mum can pay any care home fees, out of her own income and or savings. Your home is your own, and moreover you have a right to a life of your own.
That said, family finances do often get very intertwined when you live together. I can imagine therefore that you may not be able to see how you could manage without your mum's contribution to the household budget (please forgive me if I've misunderstood this).
I don't know what your situation is but you cannot and should not continue like this. As others have suggested, a care needs assessment or carers assessment should result in some help for you. If it doesn't, it needs challenging! If all else fails, I'd go to your GP and say you can't go on for your health's sake.
Wishing you all the best
Lindy xx

 

[Kazzy2016]

Been there myself, contact Adult social services ASAP and tell them you are at Crisis point. You cannot be expected to go on indefinitely. I know it’s hard to admit to yourself that you’ve reached the end of your rope.
They have a duty of care to you as the Carer. Get Help.
Phone Alzheimers helpline, talk to your GP and start looking for care for your Mum.
Care home Uk website is a good portal for care home reviews.
Your mum has reached a level that clearly shows she needs professional care, none of us can go on 24/7,365 days a year .

Please think this situation through objectively - I say this with love and support.

 

[Herewego]

Hi Duggies Girl

I am only 45 hon, the reasons why I think I will have to pay for mums care, is that I’ve had literally loads of financial assessments done in the last 4 years, and there’s no way out of this one financial wise, my mum lives with me in my house, she can’t live on her own anymore, so I care for her 24/7,
My dad left a heavy pension, and it passed on to mum, after he diesd, plus she gets state pension and dvla, which goes way over the threshold, and where not eligible for any help at all, so yeah, I’m stuck with this life until she dies basically... last night, she scratched my hand, and bent my thump back so far that I thought it was discolated, and it was throbbing all night long, so sleep is over rated.. lol xx

Hi VonVee

Accepting that your mom will have to pay for her own care there are still some things that you can do.

I looked after MIL in our own home and we used the proceeds of her house sale to add two ground floor rooms with en-suites onto our house to accommodate a 24/7 care plus a room for MIL and a small sitting room between the two. We used her money to purchase a special bed and bath lift and then to pay for additional care to come in as I needed it. She was much happier here (than she had been in the care home the LA had placed her in - long story) and as her needs became greater I just bought in more care. I still always picked up her weekend care except putting her to bed. As I was working full time and had 4 young kids, I had to buy in additional care. After MIL passed the additional space has enabled us to use the rooms for lodgers, but as my husband's dementia gets worse, I am thinking we may need to use them for his care at some point.

My OH now has dementia and I have been exploring what we will do as his condition deteriorates and found a site on google that offers 24/7 live-in care for about £800 a week as opposed to over £1000 that alot of homes charge. They claim to be able to provide care anywhere in the UK.

I agree with the others, you can not go on like you are, you definitely need to find additional help - it is just a matter of working out what that will look like.

As I see it you have 3 or 4 choices or a mixture of them:

• Find a care home, place mom and pick up the bill using your mom's finances;
• Find a private company that can provide you with additional help on a regular basis for as many hours as you need - again picking up the costs using your mom's finances;
• Find a private company to provide you with virtual care home @ your home by taking over your mom's care 100% but within your own home (rather than at a care home)
• Perhaps a forth option is to use the last option for respite care - if your home doesn't have an extra bedroom the carer/s could use, they could use your room if you go away for your break and leave mom & carer at your home

There is of course the option of letting your LA sort out her care but in my experience being able to choose the care your mom gets yourself, without interference is a good thing. I know it goes against the grain to use your mom and dad's hard earned money to finance the care but in many ways that money was in part there to look after them in their old age.

I too found it difficult using my MIL's money to do what was needed to enable her to be cared for at our home but I felt a lot better using it to care for her at our home than paying for a Care Home that was charging the earth yet when we saw her there, she was in bed, had wet herself, was not being changed or looked after - it was awful!

Good luck - just remember if you don't look after yourself, you won't be able to look after your mom - sort out a break for yourself - get some space and that is likely to help you to work out what your next steps should be.