Reluctant Carers

[Wolfwoman]

I wonder how many Carers come under the category of ‘reluctant carers’. Those of us who have had a rocky relationship for many years and now the person that brought turmoil and upset to our lives needs our care. How do we get over the resentment of having to help them knowing, in my case, the years aren’t on my side. How can we feel anything other being pitiless to these people. We want time with family and friends but can’t because of our begrudged promise - in sickness and in health etc. I may sound cold, hard, selfish I’m far from that but I’m incredibly sad that my life has come to this. So how do ‘reluctant carers’ get through this? I can’t be the only
one.

 

[BeeBeeDee]

You are not the only one Wolfwoman. I dont know the answer though sorry X

 

[Wolfwoman]

You are not the only one Wolfwoman. I dont know the answer though sorry X

In a way it’s a comfort to know I’m not the only one. Hope you are ok.

 

[My Mum's Daughter]

In a way it’s a comfort to know I’m not the only one. Hope you are ok.

I've tagged you on a recent, similar thread.

 

[sapphire turner]

We had a pretty good relationship over 25 years, a second marriage with 6 children between us. My husband could be bossy, sulky and controlling but it was a few isolated incidents over the years. He is just like that most of the time now and I find it hard to cope with. I am really not sure how much longer I can put up with him being horrible to me. But how can I leave him when he can’t look after himself? Currently he would never agree to going in a care home. I will just have to hope that he changes his ways as the disease progresses.

 

[Chizz]

We had a pretty good relationship over 25 years, a second marriage with 6 children between us. My husband could be bossy, sulky and controlling but it was a few isolated incidents over the years. He is just like that most of the time now and I find it hard to cope with. I am really not sure how much longer I can put up with him being horrible to me. But how can I leave him when he can’t look after himself? Currently he would never agree to going in a care home. I will just have to hope that he changes his ways as the disease progresses.

Hi @sapphire turner
If you feel or come to feel that you can't care or go on caring for your husband
- one adult, even a spouse, is not legally obliged to look after (or pay for) another adult
- the Local Authority Adult Social Services would be ultimately responsible for looking after him

If you feel or come to feel that by reason of your husband's behaviours, physical or mental, that either he could be or become a danger to himself or to you (or indeed any other person), then you should contact the LA ASS straight away and tell them you can no longer care for him. In an emergency, call 999 police. In such circumstances they would take him to the local hospital secure ward for PWD or mental illnesses, and he might be sectioned under the Mental Health Act for 28 days or longer for assessment.

Sorry if I've told you what you already know.

Best wishes

 

[sapphire turner]

Hi Chizz thanks for this, I kinda know what I will need to do if/when it comes to the crunch. At the moment it is weird enough, but doesn’t seem bad enough yet to make the move. He talks about needing to punish me but this has so far been by throwing water on my bed, and messing with my personal stuff. He is convinced that I am having an affair because I won’t sleep with him. If he starts being nice to me, it is not long until he starts pushing his sex agenda and then getting angry because I haven’t responded to the carrot rather than the stick.
It’s hard to know where to draw the line on threatening behaviour, social services (and possibly the police tho I haven’t tried them) were only interested in physical abuse. Maybe I have to wait until he hits me before I can get any help from them.
Luckily I am reasonably well off due to NHS pension and some money from my mother but I can’t imagine him agreeing to going into respite care or any kind of psychiatric evaluation. It’s everyone else that’s mad, not him.

 

[cymbid]

My first marriage was abusive, and it took a lot of courage to leave. At the time I was convinced it wasnt bad enough to leave. How could I be so selfish etc. But once the slaps became punches and the sex became rape it was time to go. Dont wait ......

 

[Silversally]

I wonder how many Carers come under the category of ‘reluctant carers’. Those of us who have entratehad a rocky relationship for many years and now the person that brought turmoil and upset to our lives needs our care. How do we get over the resentment of having to help them knowing, in my case, the years aren’t on my side. How can we feel anything other being pitiless to these people. We want time with family and friends but can’t because of our begrudged promise - in sickness and in health etc. I may sound cold, hard, selfish I’m far from that but I’m incredibly sad that my life has come to this. So how do ‘reluctant carers’ get through this? I can’t be the only
one.

I am with you, Wolfwoman. I have to consider myself a professional career and do the right thing but now and again all the resentment for past treatment (not aggression fortunately) comes pouring out.
How I wish I had not been so weak and had left him years ago. I would never consider you heartless - I hope you can concentrate on some things in your life which bring you joy and help you forget the sadness for a while.

 

[JaxG]

I wonder how many Carers come under the category of ‘reluctant carers’. Those of us who have had a rocky relationship for many years and now the person that brought turmoil and upset to our lives needs our care. How do we get over the resentment of having to help them knowing, in my case, the years aren’t on my side. How can we feel anything other being pitiless to these people. We want time with family and friends but can’t because of our begrudged promise - in sickness and in health etc. I may sound cold, hard, selfish I’m far from that but I’m incredibly sad that my life has come to this. So how do ‘reluctant carers’ get through this? I can’t be the only
one.

Hi @Wolfwoman you are not alone. My husband was always a difficult man, but his moodiness and aggression became worse over the last 15 years as his business failed. He ran up debts, and as dementia progressed it was left to me to pay off these debts and for this I cannot forgive him. His ego and the impression of success to outsiders was more important to him than me and our family. I did not leave because I could not afford to and this last 5 years have been incredibly hard, but he has deteriorated hugely over the last 5 months and I know this will come to an end. I think the most stressful part is not knowing how long we will have to live like this. I don't think you are cold or callous - I think these people who 'bring turmoil and upset' to our lives often choose partners who are empathetic and caring. I have looked after my husband his entire adult life, I deserved more care and thought than he could give me and that is on him. He has been lucky that I have had to stay to 'care' for him.

 

[Alisongs]

I wonder how many Carers come under the category of ‘reluctant carers’. Those of us who have had a rocky relationship for many years and now the person that brought turmoil and upset to our lives needs our care. How do we get over the resentment of having to help them knowing, in my case, the years aren’t on my side. How can we feel anything other being pitiless to these people. We want time with family and friends but can’t because of our begrudged promise - in sickness and in health etc. I may sound cold, hard, selfish I’m far from that but I’m incredibly sad that my life has come to this. So how do ‘reluctant carers’ get through this? I can’t be the only
one.

Please remember that no one is legally obliged to care for family or friends. An adult needing care comes under the remit of Social Services. My OH has 3 chronic conditions and all the charities, hospital departments, doctor etc etc would say they could only deal with one, and instead of dealing with that one thing, told me to ring elsewhere. Two years later I was so tired I was making mistakes with his meds as well as him being angry and uncooperative as he wanted a wife not a nurse/nag. He went into hospital as a danger to himself - and me.
Turns out one consultant had written to GP a year ago for district nurse to step in as diabetes should be self managed and carers should not step in, diabetic clinic had not told me, and letter got "lost" for many months. (I suspect clinic was too embarrassed to send it.). Supported discharge from hospital eventually arranged and after a week the response to problems and queries has been supersonic rather than stone deaf. Lots of referrals coming back to us.
It may be a desperate measure, but either ring Social Services (Crisis Team) or take him to A and E and say you are relinquishing medical responsibility for the time being as your health is suffering. You care but you cannot cope or carry on under present conditions. Just be firm and quote legislation. Person A (authorities) cannot force Person B (you) to take care of Person C (OH). I have been surprised how much support there is, too many barriers to accessing support exist. As an aside, his first day home I was really sick, and so glad support was coming and going as I was too ill to function!

 

[Bevhar]

I wonder how many Carers come under the category of ‘reluctant carers’. Those of us who have had a rocky relationship for many years and now the person that brought turmoil and upset to our lives needs our care. How do we get over the resentment of having to help them knowing, in my case, the years aren’t on my side. How can we feel anything other being pitiless to these people. We want time with family and friends but can’t because of our begrudged promise - in sickness and in health etc. I may sound cold, hard, selfish I’m far from that but I’m incredibly sad that my life has come to this. So how do ‘reluctant carers’ get through this? I can’t be the only
one.

I totally understand this I’ve had a happy marriage with a very caring husband But I’m finding it so hard at the moment I fell last week & have broken my hand & cracked my ribs I’m finding it so hard as my husband has always been a great support at the moment he’s in his own world I’m feeling very resentful & feel bad about it But in a case where a marriage hasn’t been that happy it must be hell Have you got any family to support you emotionally I don’t think you are hard or uncaring just like the rest of us worn out Please don’t be so hard on yourself This is the most hideous disease & sometimes I think it’s worse for the carer

 

[JaxG]

Please remember that no one is legally obliged to care for family or friends. An adult needing care comes under the remit of Social Services. My OH has 3 chronic conditions and all the charities, hospital departments, doctor etc etc would say they could only deal with one, and instead of dealing with that one thing, told me to ring elsewhere. Two years later I was so tired I was making mistakes with his meds as well as him being angry and uncooperative as he wanted a wife not a nurse/nag. He went into hospital as a danger to himself - and me.
Turns out one consultant had written to GP a year ago for district nurse to step in as diabetes should be self managed and carers should not step in, diabetic clinic had not told me, and letter got "lost" for many months. (I suspect clinic was too embarrassed to send it.). Supported discharge from hospital eventually arranged and after a week the response to problems and queries has been supersonic rather than stone deaf. Lots of referrals coming back to us.
It may be a desperate measure, but either ring Social Services (Crisis Team) or take him to A and E and say you are relinquishing medical responsibility for the time being as your health is suffering. You care but you cannot cope or carry on under present conditions. Just be firm and quote legislation. Person A (authorities) cannot force Person B (you) to take care of Person C (OH). I have been surprised how much support there is, too many barriers to accessing support exist. As an aside, his first day home I was really sick, and so glad support was coming and going as I was too ill to function!

You are right that no one is legally obliged to care for the PWD. The problem is that if SS consider that person has some ability to care for themselves, however limited, the only advice is to sell your home and divide the assets so that the dementia patient can use his half to fund the support he needs. After years of verbal abuse and aggression, two years ago my husband became physically violent and I had to call the police. SS got involved, I was told to leave him and sell our home. A year later the same happened, SS deemed my husband to no longer have capacity but I was still told I would have to sell my home to fund the care he might need. Now my husband has deteriorated a lot. He is continent but needs reminding and support for every other aspect of his life. He does sleep a lot and is no longer aggressive, but he has almost no mental functioning, and I know that I will still have to fight to get him into full time care since we will need LA funding. I am exhausted, at times I feel like I can't go on, but this makes no difference.

 

[albo]

You are right that no one is legally obliged to care for the PWD. The problem is that if SS consider that person has some ability to care for themselves, however limited, the only advice is to sell your home and divide the assets so that the dementia patient can use his half to fund the support he needs. After years of verbal abuse and aggression, two years ago my husband became physically violent and I had to call the police. SS got involved, I was told to leave him and sell our home. A year later the same happened, SS deemed my husband to no longer have capacity but I was still told I would have to sell my home to fund the care he might need. Now my husband has deteriorated a lot. He is continent but needs reminding and support for every other aspect of his life. He does sleep a lot and is no longer aggressive, but he has almost no mental functioning, and I know that I will still have to fight to get him into full time care since we will need LA funding. I am exhausted, at times I feel like I can't go on, but this makes no difference.

Hi if you get to the point that you can't cope rather than selling the home are you not entitled to stay in the home as you're a wife,if you could get husband in to care.The home should be disregarded in a financial assessment

 

[Alisongs]

You are right that no one is legally obliged to care for the PWD. The problem is that if SS consider that person has some ability to care for themselves, however limited, the only advice is to sell your home and divide the assets so that the dementia patient can use his half to fund the support he needs. After years of verbal abuse and aggression, two years ago my husband became physically violent and I had to call the police. SS got involved, I was told to leave him and sell our home. A year later the same happened, SS deemed my husband to no longer have capacity but I was still told I would have to sell my home to fund the care he might need. Now my husband has deteriorated a lot. He is continent but needs reminding and support for every other aspect of his life. He does sleep a lot and is no longer aggressive, but he has almost no mental functioning, and I know that I will still have to fight to get him into full time care since we will need LA funding. I am exhausted, at times I feel like I can't go on, but this makes no difference.

If you are over 60 a jointly owned house would be disregarded for care costs. Problems arise if sold, half of any profit after buying a new home would go for his care

 

[Mirielle]

Even when you have had a loving relationship it is hard to bear it when they become abusive mentally or physically. I am on this website to try to calm down and not respond in kind. I hope he dies before i lose what is essentially a loving wonderful man. I so admire those of you who stay when they do not deserve your care. It must be so much harder for you. I know this is no help but felt I had to talk.

 

[JaxG]

Hi if you get to the point that you can't cope rather than selling the home are you not entitled to stay in the home as you're a wife,if you could get husband in to care.The home should be disregarded in a financial assessment

I am working to this point now, thank you.

 

[JaxG]

If you are over 60 a jointly owned house would be disregarded for care costs. Problems arise if sold, half of any profit after buying a new home would go for his care

Thank you for your reply. xx

 

[Chizz]

Even when you have had a loving relationship it is hard to bear it when they become abusive mentally or physically. I am on this website to try to calm down and not respond in kind. I hope he dies before i lose what is essentially a loving wonderful man. I so admire those of you who stay when they do not deserve your care. It must be so much harder for you. I know this is no help but felt I had to talk.

Best wishes @Mirielle in these difficult times, and a virtual hug.

 

[Ellie2018]

I think you will find that so many of us feel the same way. We had 25 great years but the last 13 have been hard. He was diagnosed 3 years ago and it has been hard but I’m lucky in that he, reluctantly, goes to a day centre 3 days a week so that’s how I cope. It sounds a lot but it’s 15 hours and the rest I have to deal with. The other way is I bury my head and just deal with each day as it comes. Good luck.