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Don't want to be a carer anymore

Maxr1972

New member
May 22, 2020
7
My mother was diagnosed with front temporal lobe dementia last year, and I am her sole carer. My father died last year. My sister lives in another country. My mother has a brother and sister. The brother never really bothered much anyway. The sister however was really close, but since my father died that seems to have disappeared too. So that just leaves me. As we are currently in lockdown I am here all day long. My mother has reverted to the role of a child, always asking what she should do. She can't work anything electrical so she can't cook, clean,mow lawns, turn the tv on or off etc. Her speech is badly affected and there is virtually no conversation anymore, just a guessing game of what she is trying to say. My sister told me once that I should expect to be the carer as I didn't have a house of my own, and I'd enjoyed cheap rent for years. My sister has a house a husband and 2 children. This makes me feel that I've been chosen as the sacrificial sister so that she can have a life. I'll admit to wanting to punch her when she said that to me, but what's the point. I just feel as if my life is slipping away. I try to do the best for my mother, but all I can see ahead is her getting worse, and me being left to deal with it on my own.
 

TNJJ

Registered User
May 7, 2019
1,780
cornwall
My mother was diagnosed with front temporal lobe dementia last year, and I am her sole carer. My father died last year. My sister lives in another country. My mother has a brother and sister. The brother never really bothered much anyway. The sister however was really close, but since my father died that seems to have disappeared too. So that just leaves me. As we are currently in lockdown I am here all day long. My mother has reverted to the role of a child, always asking what she should do. She can't work anything electrical so she can't cook, clean,mow lawns, turn the tv on or off etc. Her speech is badly affected and there is virtually no conversation anymore, just a guessing game of what she is trying to say. My sister told me once that I should expect to be the carer as I didn't have a house of my own, and I'd enjoyed cheap rent for years. My sister has a house a husband and 2 children. This makes me feel that I've been chosen as the sacrificial sister so that she can have a life. I'll admit to wanting to punch her when she said that to me, but what's the point. I just feel as if my life is slipping away. I try to do the best for my mother, but all I can see ahead is her getting worse, and me being left to deal with it on my own.
Hi.I'm an only child and I have both parents (divorced).Dad has Vascular Dementia.Have you contacted Social Services for an assessment? Have you got Attendance Allowance and Carers Allowance? That would help you to get some help.But I know what you mean .Even though dad has carers in I'm still having to check that they are doing stuff for him correctly.Plus arranging appointments. Same with mum.No carers but having to get her shopping.It is easy to forget ourselves in all of this..I make sure I have time out from dad particularly.He is not an easy man shall we say..Can you get some time out after the lock down..?Your sister was lucky you didn't punch her.What an awful thing to say...(((Hugs)))
 

canary

Registered User
Feb 25, 2014
13,645
South coast
Of course you wont have to do the caring all on your own until your mum passes. Everything is rather strange at the moment, but this lockdown wont last forever. Your mum would probably enjoy day care or having someone coming to sit and have a cup of tea with her - and this will give you a break. There is the option of some respite in a care home too. If your mum requires assistance with washing/dressing and getting ready for bed then you can get carers to do this. Help is available, but you have to ask for it. As @TNJJ says, contact SS for a needs assessment. They are being slow at the moment, but get the ball rolling.
 

Splashing About

Registered User
Oct 20, 2019
434
I had a friend who got caught in a very difficult situation. They moved in with his parents and paid nominal rent or outgoings. This benefitted them as they couldn’t afford to buy and it was cheaper than rent. They did however continue to improve the house and spend money on it eventually being responsible for everything.

The level of care provided to the elderlies increased year on year and many years later was unsustainable as both parents had dementia, incontinence and all the other challenges we all know about. It really impacted on their family nearly causing a breakdown.

Their options were to desert the elderlies (which they wouldn’t do) or sell the house they’d put money into over the years to pay for care (whether day care, personal care visits or residential) The wife could not work and had to give up working to keep the elderlies safe. They were trapped.

Their selfish relatives wouldn’t come and give them a week’s break by house and parent sitting (we are in a holiday area and it would have been free accommodation) Their reason was because it was too difficult. (Yes ...it is! but imagine it full time) When the time came to make decisions the relatives wanted the house sold making them homeless. They ignored the many years of devoted care that had been given and would have cost thousands and thousands and just focused on the fact they hadn’t had to buy or had the means to buy. Heartless, thoughtless, and totally selfish.
 

Weasell

Registered User
Oct 21, 2019
663
Your post must articulates the fears and feelings felt by many more people than you.
Great advice above.
Apply for Attendance allowance, then Carers allowance.
Have a power of attorney in place.
Contact social services.
I am wondering if the property that your mother lives in is owned by her ? and are you over 60?
 

Maxr1972

New member
May 22, 2020
7
Your post must articulates the fears and feelings felt by many more people than you.
Great advice above.
Apply for Attendance allowance, then Carers allowance.
Have a power of attorney in place.
Contact social services.
I am wondering if the property that your mother lives in is owned by her ? and are you over 60?
Hi, yes it's her property and it's mortgage free. I applied for attendance allowance for her, which she's just received. The thing is I am still expected to give half of it to my sister when the end comes, even though she has her own house and business. She has said that she won't take her half, as long as her children have everything after my day. So I'm faced with either selling up and being too old to get a mortgage, or staying put. My father saw the unfairness of this and wanted to give her a money payment, while I kept the house. However he died before this happened. My sister moved out almost 20 years ago, but no I'm not over 60.
 

Maxr1972

New member
May 22, 2020
7
Your post must articulates the fears and feelings felt by many more people than you.
Great advice above.
Apply for Attendance allowance, then Carers allowance.
Have a power of attorney in place.
Contact social services.
I am wondering if the property that your mother lives in is owned by her ? and are you over 60?
Hi, yes it's her property and it's mortgage free. I applied for attendance allowance for her, which she's just received. The thing is I am still expected to give half of it to my sister when the end comes, even though she has her own house and business. She has said that she won't take her half, as long as her children have everything after my day. So I'm faced with either selling up and being too old to get a mortgage, or staying put. My father saw the unfairness of this and wanted to give her a money payment, while I kept the house. However he died before this happened. My sister moved out almost 20 years ago, but no I'm not over 60.
I had a friend who got caught in a very difficult situation. They moved in with his parents and paid nominal rent or outgoings. This benefitted them as they couldn’t afford to buy and it was cheaper than rent. They did however continue to improve the house and spend money on it eventually being responsible for everything.

The level of care provided to the elderlies increased year on year and many years later was unsustainable as both parents had dementia, incontinence and all the other challenges we all know about. It really impacted on their family nearly causing a breakdown.

Their options were to desert the elderlies (which they wouldn’t do) or sell the house they’d put money into over the years to pay for care (whether day care, personal care visits or residential) The wife could not work and had to give up working to keep the elderlies safe. They were trapped.

Their selfish relatives wouldn’t come and give them a week’s break by house and parent sitting (we are in a holiday area and it would have been free accommodation) Their reason was because it was too difficult. (Yes ...it is! but imagine it full time) When the time came to make decisions the relatives wanted the house sold making them homeless. They ignored the many years of devoted care that had been given and would have cost thousands and thousands and just focused on the fact they hadn’t had to buy or had the means to buy. Heartless, thoughtless, and totally selfish.
By the sound of it, your friend has already sold. It's a shame. I have a law degree, and I can tell you that they would have had a case for keeping that house, especially if they had upgraded and maintained over the years. Did they seek legal advice?
 

Maxr1972

New member
May 22, 2020
7
Hi.I'm an only child and I have both parents (divorced).Dad has Vascular Dementia.Have you contacted Social Services for an assessment? Have you got Attendance Allowance and Carers Allowance? That would help you to get some help.But I know what you mean .Even though dad has carers in I'm still having to check that they are doing stuff for him correctly.Plus arranging appointments. Same with mum.No carers but having to get her shopping.It is easy to forget ourselves in all of this..I make sure I have time out from dad particularly.He is not an easy man shall we say..Can you get some time out after the lock down..?Your sister was lucky you didn't punch her.What an awful thing to say...(((Hugs)))
Hi, my sister is in another country, so she does have a watertight excuse so to speak. However it's only an hour away by plane. My mother won't have anything to do with social services, or consider joining clubs or activities. If I go out, she comes too. I would love to go out for a day shopping on my own (post pandemic), but then I have the guilt of leaving her behind on her own.
 

Maxr1972

New member
May 22, 2020
7
Hi.I'm an only child and I have both parents (divorced).Dad has Vascular Dementia.Have you contacted Social Services for an assessment? Have you got Attendance Allowance and Carers Allowance? That would help you to get some help.But I know what you mean .Even though dad has carers in I'm still having to check that they are doing stuff for him correctly.Plus arranging appointments. Same with mum.No carers but having to get her shopping.It is easy to forget ourselves in all of this..I make sure I have time out from dad particularly.He is not an easy man shall we say..Can you get some time out after the lock down..?Your sister was lucky you didn't punch her.What an awful thing to say...(((Hugs)))
My sister's answer is that we should sell up and go and live near her in a different country. Basically she's more or less said that if I don't want to do that, I have to accept that the majority of caring (I would say 100% of it!), falls to me.
 

Maxr1972

New member
May 22, 2020
7
7
Of course you wont have to do the caring all on your own until your mum passes. Everything is rather strange at the moment, but this lockdown wont last forever. Your mum would probably enjoy day care or having someone coming to sit and have a cup of tea with her - and this will give you a break. There is the option of some respite in a care home too. If your mum requires assistance with washing/dressing and getting ready for bed then you can get carers to do this. Help is available, but you have to ask for it. As @TNJJ says, contact SS for a needs assessment. They are being slow at the moment, but get the ball rolling.
Thanks for the advice. My mother flat out refuses yh have SS involved, and won't consider day care or social clubs of any kind. Atleast when I go back to work I will be able to get out.
 

Hazel49

New member
Mar 30, 2020
5
Hi Maxr1972

Oh how I understand what you're going through. My brother and I are looking after our mum with dementia. She totally denies she's deaf, can't remember anything, can't understand or take anything in despite being repeatedly being told the same thing. Like yours, won't have anything to do with a doctor, SS, day centre etc. All we get endlessly all day is the same question - 'what are we doing today, are we going out?' It starts after breakfast and is repeated about every 5 minutes until she wears us down to a point of total frustration after lunch when, for the sake of a bit of peace and quiet we give in. All she wants to do is be in the car driving around nowhere in particular, looking at the rear of the car in front - she calls it getting some fresh air! As soon as we are back she gets all gloom and doom and starts with 'what are we doing this evening, can't we go out?'

It's endless - in the end we ignore her, then she gets aggressive and tells us to get out and not come back, but says she's lonely and doesn't want to be on her own. Won't even let my brother sit at the dining table in the next room and do his modelling.

We have an appointment with Mental Services at the end of June, put back from March 25th - I hope to God that they can help us. So, we fully understand your position in these lockdown Covid days - it makes life relentlessly difficult.

We will all survive these situations, but that doesn't make it easy andlike you we are at the end of our rope.
 

Maxr1972

New member
May 22, 2020
7
Hi Maxr1972

Oh how I understand what you're going through. My brother and I are looking after our mum with dementia. She totally denies she's deaf, can't remember anything, can't understand or take anything in despite being repeatedly being told the same thing. Like yours, won't have anything to do with a doctor, SS, day centre etc. All we get endlessly all day is the same question - 'what are we doing today, are we going out?' It starts after breakfast and is repeated about every 5 minutes until she wears us down to a point of total frustration after lunch when, for the sake of a bit of peace and quiet we give in. All she wants to do is be in the car driving around nowhere in particular, looking at the rear of the car in front - she calls it getting some fresh air! As soon as we are back she gets all gloom and doom and starts with 'what are we doing this evening, can't we go out?'

It's endless - in the end we ignore her, then she gets aggressive and tells us to get out and not come back, but says she's lonely and doesn't want to be on her own. Won't even let my brother sit at the dining table in the next room and do his modelling.

We have an appointment with Mental Services at the end of June, put back from March 25th - I hope to God that they can help us. So, we fully understand your position in these lockdown Covid days - it makes life relentlessly difficult.

We will all survive these situations, but that doesn't make it easy andlike you we are at the end of our rope.
I'm really sorry to hear that. It must be a kind of torture on a daily basis for you. It sounds as if my mother isn't at that stage yet. I sometimes think that caring for someone with a physical illness would be better. When it's the mind that's affected as with dementia, it can be a worse kind of hell for carers. I hope you have some help soon.