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Deprivation of Liberty of the Carer

MaryMac54

Registered User
Aug 23, 2019
13
I want to know why there is much about the Deprivation of the person being cared for but nothing about Deprivation of Liberty of the person who lives with and cares for someone 24/7? You are expected to stay in without a break and can only leave if you have made arrangements for the person being cared for. Is it not time that there were rights for the Carer? The Carer is on Duty 24 hours and is not entitled to sleep, a home to retreat to, any personal liberty without the 'permission' of someone else either paid or voluntary. The Carer cannot do what they want or need to do. The person being cared for has laws and processes that protect them but not the Carer.
 

Bikerbeth

Registered User
Feb 11, 2019
1,706
Bedford
You are absolutely right as so many posts on here show. I am sure that others on here with have total empathy with you.
I never did 24/7 care I only did about 30 hours a week plus phone calls up to 4 times a day
 

margherita

Registered User
May 30, 2017
2,572
Italy, Milan and Acqui Terme
Hi @MaryMac54,
I might have written your post.
I have been " under house arrest" for a couple of years and am at my tether's end.
My husband could spend a few hours on his own while I am away , but he doesn't let me go anywhere.
Besides, he doesn't accept anyone else's company but mine.
Some days ago, after he had been pestering me with his absurd demands for hours, I lost it and said I would lock myself up in the bathroom to spend some time on my own. Surprisingly ( he doesn't literally understand anything) he rushed to the bathroom and took away the key. I couldn't have it back and, then , he must have hidden it , so I had to have a latch installed on the door . That bathroom is also the only safe place where I can go should he become aggressive.

You have all my sympathy.
 

MaryMac54

Registered User
Aug 23, 2019
13
Hi @MaryMac54,
I might have written your post.
I have been " under house arrest" for a couple of years and am at my tether's end.
My husband could spend a few hours on his own while I am away , but he doesn't let me go anywhere.
Besides, he doesn't accept anyone else's company but mine.
Some days ago, after he had been pestering me with his absurd demands for hours, I lost it and said I would lock myself up in the bathroom to spend some time on my own. Surprisingly ( he doesn't literally understand anything) he rushed to the bathroom and took away the key. I couldn't have it back and, then , he must have hidden it , so I had to have a latch installed on the door . That bathroom is also the only safe place where I can go should he become aggressive.

You have all my sympathy.
Sound so bad. It just isn't right that Carer's have no protection and no rights to a life.
 

MaryMac54

Registered User
Aug 23, 2019
13
You are absolutely right as so many posts on here show. I am sure that others on here with have total empathy with you.
I never did 24/7 care I only did about 30 hours a week plus phone calls up to 4 times a day
Thank you. I didn't know how anyone else felt as all the pictures in the leaflet show loving smiley people and as they call in on this Journey! I feel so powerless as I expect others do.
 

Andrea57

Registered User
Feb 15, 2020
69
Chesterfield
Thank you. I didn't know how anyone else felt as all the pictures in the leaflet show loving smiley people and as they call in on this Journey! I feel so powerless as I expect others do.
You are totally right I am fed up of being send leaflets and books when all I want to do is run a mile and not come back.
 

Duggies-girl

Registered User
Sep 6, 2017
2,135
It says so much about us as human beings that we don’t.
Kindred
That is so true @kindred I was always thinking about running away but I know that I wouldn't have. Perhaps if dad hadn't been the lovely, kind and funny person that he had always been then maybe I would have.

@MaryMac54 I looked after dad 24/7 for a year and I think it is unsustainable for anyone to do this without regular breaks and some other help. Caring is often regarded as a rewarding way of life as if self sacrifice should make us feel good about ourselves. This may be true in some cases but not most as you will see if you read many of the posts on here. I read 'The Selfish Pig's guide to caring' and found it very useful. I would recommend it as it helped me with some things.

You don't say who you are caring for, husband or parent but whoever it is you should not be in this position as non of us are responsible for the care of another adult. You need to contact social services and get an assessment for yourself and the person you are caring for before you reach breakdown which you will if you go on like this.
 

Andrea57

Registered User
Feb 15, 2020
69
Chesterfield
That is so true @kindred I was always thinking about running away but I know that I wouldn't have. Perhaps if dad hadn't been the lovely, kind and funny person that he had always been then maybe I would have.

@MaryMac54 I looked after dad 24/7 for a year and I think it is unsustainable for anyone to do this without regular breaks and some other help. Caring is often regarded as a rewarding way of life as if self sacrifice should make us feel good about ourselves. This may be true in some cases but not most as you will see if you read many of the posts on here. I read 'The Selfish Pig's guide to caring' and found it very useful. I would recommend it as it helped me with some things.

You don't say who you are caring for, husband or parent but whoever it is you should not be in this position as non of us are responsible for the care of another adult. You need to contact social services and get an assessment for yourself and the person you are caring for before you reach breakdown which you will if you go on like this.
I was told about the selfish pigs guide to caring by mums nurse ,is it definitely worse the read?
 

canary

Registered User
Feb 25, 2014
13,897
South coast
I downloaded it onto my kindle so that OH wouldnt see what I was reading. Its funny, but makes serious points. Its not specifically for dementia, so some of the advice is not always helpful eg the advice to include your piglet in decisions about their health, but the vast majority is very good.
 

None the Wiser

Registered User
Feb 3, 2020
127
I was told about the selfish pigs guide to caring by mums nurse ,is it definitely worse the read
Yes it is @Andrea57, but not as much as dipping into this forum on a regular basis.
I do so agree with you @MaryMac54. You can see how, even with the best will in the world, carers reach burnout. There does seem to be recognition of this in some quarters e.g. the psychiatrist who is treating my OH at the moment said she was concerned about my welfare, and so did the GP practice nurse, and both referred us to social services, but there it stopped.
 

Duggies-girl

Registered User
Sep 6, 2017
2,135
Yes it is @Andrea57, but not as much as dipping into this forum on a regular basis.
I do so agree with you @MaryMac54. You can see how, even with the best will in the world, carers reach burnout. There does seem to be recognition of this in some quarters e.g. the psychiatrist who is treating my OH at the moment said she was concerned about my welfare, and so did the GP practice nurse, and both referred us to social services, but there it stopped.
Yes concern about the carers welfare is often short in supply. Everyone asked how dad was which was nice of course but I was rarely asked how I was. I also got a bit fed up with people telling me what a good job I was doing and how dad was only still here because of the care I gave him which was probably true and nice to hear but really didn't make me feel any better about things. His oncologist said that the reason dad did so much better than they expected was because of the excellent care he got at home.

Dad's sister often used to phone me and ask how he was and she always tried to boost me up by saying how well I was doing and she would always finish the conversation with 'keep up the good work' which also didn't help although she meant well. I know she would have helped me but she lives 300 miles away so it was impossible.
 

MaryMac54

Registered User
Aug 23, 2019
13
Hmmm......
If you stay on here you will see the reality, rather than the glossy, rose-glow version
Interesting you state that people say you are doing a great job. I now challenge anyone who says that and ask how they know I am doing a great job and why they say that when they don't know. It does shut them up because they are always the one's giving advice as if you can't think for yourself. I have stopped thinking they mean well at all. I also correct people, whoever they are, who call it a journey, because it's not a journey if it was I would want a refund. My hairdresser of nearly 30 years is in the next town and those 'advice givers' suggest getting a hairdresser closer so that I am not out of the house so long. Great! Very helpful. So I did upset the last one who said that by saying "that's my reward for not going out, working hard 24/7 and 365 to have to give up my hairdresser. Thanks a lot". The response was "I can see I've upset you". Understatement. What I would have like to hear "stop worrying, you tell me when you need to see your hairdresser and I will come in and sit with your husband". And they are upset!!! It's like you are living in two separate universes. Advice I don't need, physical help is what I do need. I haven't lost my marbles I've lost my freedom and home and soon my sanity!
 

MaryMac54

Registered User
Aug 23, 2019
13
You are totally right I am fed up of being sent leaflets and books (my pile is now over 8" deep) when all I want to do is run a mile and not come back.
The leaflets, usually out of date information and telephone numbers and lovey-dovey pictures don't help. Stop printing the damn things and provide physical help. Stop cutting down the trees and actually DO something. I have thought myself of running away. A seedy bedsit can become almost a longing. If Social Services put resources into providing rather than preventing we would all be much happier. What's the point of all these people going out and telling you you are not entitled to help. Get rid of them! Let's save their wages. Sick of hearing there is no money, even when you're going to pay anyway!
 

canary

Registered User
Feb 25, 2014
13,897
South coast
Interesting you state that people say you are doing a great job.
I never said that at all.
I replied to your post that commented on the leaflets showing loving smiley people and I said that if you stay on here you will see the reality rather than the rosy-glow view.
Did you reply to the wrong person?
 

Duggies-girl

Registered User
Sep 6, 2017
2,135
I never said that at all.
I replied to your post that commented on the leaflets showing loving smiley people and I said that if you stay on here you will see the reality rather than the rosy-glow view.
Did you reply to the wrong person?
It was me who said that I was fed up with people telling me what a good job I was doing. What I wanted was for someone to ask me if I was coping okay and would I like a week off to go and have a break of some kind. Of course I wouldn't expect this from a casual friend or a neighbour but family members could have been a lot more helpful.

As for hairdressers, I get that. A haircut was a day out for me. I only got a cut and blow dry every 3 months and I so looked forward to it.
 

MartinWL

Registered User
Jun 12, 2020
400
As I have opined in other threads, care homes have s purpose and if the situation is as bad as it obviously I'd for some carers a care home had to be considered, or at least a home care service. You really do have to force this on the PWD, the carer cannot be expected to suffer to the extent of being under house arrest with forced labour. You are entitled to walk out and if there are no funds for private care you can tell social services that you intend to do just that, which will force their hand.
 

kindred

Registered User
Apr 8, 2018
2,525
As I have opined in other threads, care homes have s purpose and if the situation is as bad as it obviously I'd for some carers a care home had to be considered, or at least a home care service. You really do have to force this on the PWD, the carer cannot be expected to suffer to the extent of being under house arrest with forced labour. You are entitled to walk out and if there are no funds for private care you can tell social services that you intend to do just that, which will force their hand.
Yes, but what does walking out mean? How is it done? or if you like, how is it done responsibly? Kindred
 

MaryMac54

Registered User
Aug 23, 2019
13
That is so true @kindred I was always thinking about running away but I know that I wouldn't have. Perhaps if dad hadn't been the lovely, kind and funny person that he had always been then maybe I would have.

@MaryMac54 I looked after dad 24/7 for a year and I think it is unsustainable for anyone to do this without regular breaks and some other help. Caring is often regarded as a rewarding way of life as if self-sacrifice should make us feel good about ourselves. This may be true in some cases but not most as you will see if you read many of the posts on here. I read 'The Selfish Pig's guide to caring' and found it very useful. I would recommend it as it helped me with some things.

You don't say who you are caring for, husband or parent but whoever it is you should not be in this position as non of us are responsible for the care of another adult. You need to contact social services and get an assessment for yourself and the person you are caring for before you reach breakdown which you will if you go on like this.
I am caring for my husband, who was a caring, helpful and loving person. He began acting strange and was diagnosed in 2016 shortly after we downsized home and before I reached retirement age. I left work early and had almost a normal year with a couple of holidays (which were hard work with him). He remains sort of placid but suffers from agitation, wailing, crying and doing more dangerous things. I sought help nearly two years ago and reached crisis point a year ago to be told by Social Services I didn't need help and wasn't getting any. Have really struggled since. I managed to get a day centre placement just before Christmas and was able to have 5 hours break a week. Then came Covid! No help at all for months and the charity providing the day centre was able to supply a sitting service for two hours a week. Thank goodness. However, I am stressed, angry, snappy, unhappy, frustrated, lonely and so tired and sick to death of the tele, which my husband watches repeats for hours. Definitely fed up with advice! My husband is very much at risk when I leave him as we live in a 5th floor flat with balcony and open walkway as well as the domestic risks. I could not get him a Doctors appointment when he suddenly lost weight recently - down to 7st 12lb. I have had to beg for him to be seen. On Friday, suddenly, he was admitted to hospital for his own safety hence why I have posted on here. I don't know what happens next but I do know I can't go on and feel I have given all that I have. I have had two days of going in an out without worrying about what he will do. I have had 3 night's sleep where I have not been frightened as to what is going to happen while I am asleep and no tele all day. I have been for a swim and cycle ride and posted here. I don't like being a moaner (I hate what I have become) and want to do something positive and be positive.