Im looking at things from a different angle. I spent 3 l -o -n- g years caring for my dad and they were by far the toughest years of my life. Hes in a CH now and reasonably contented. I was traumatised with guilt for having to put him in care and it took me a further 3 years to come to terms with it. HOWEVER,I have told my mum should i feel she needs to go into a CH, i wont hesitate for one minute. I will never willingly go through all the trauma of caring for a dementia sufferer at home. I did it for my dad because i was ignorant of how hard it is. Now i know, theres no way i would put myself through that again. Mums in a wheelchair totally paralysed and can do nothing for herself. I care for her, in her own home, with the help of carers, but i have made it clear to her if/when the time comes i feel i can no longer cope, residential care will not be optional it will be reality. Selfish, maybe, but its my life thats been taken over by an invisible force that no one can control. Its not a good way to live.
OK tell me if I am wrong ? I am the carer and I put me first !
- Thread starter Glamour Puss
- Start date
I've put normal life on hold since Father died suddenly in Dec 09, and husband and I are camped out in the spare room in Mother's bungalow in a rural village to look after her. But fortunately she still seems OK to be left for a few hours, just not over night, so we've been able to do some things in the village. Husband is not happy - it's not his mother, he hates the repetitive conversations, the occasional smells, etc, and hankers after theatres and city centre libraries and stuff like that. He goes home a couple of nights a week. I find on the rare occasions I go home I can't remember what cupboard things are in and I turn on the hot tap expecting cold, etc - I'm a stranger in my own home. But I've gone native in the village and am on the committee of the WI!
I've always said that if Mother gets to a stage where we can't leave her in the house on her own, or if she gets to be incontinent (we have the occasional tiny dropping on the carpet or bathroom floor at present, when she thinks it's wind but it isn't!), then we will give up and go home and find her a care home. We'll see. I think I've forgotten what our normal life was like. But I retired early and the state system doesn't yet think I'm entitled to a leisurely retirement, and that argument helps me to rationalise staying here for now.
I know we have it very easy, as Mother is contented and most of her boringly repetitive conversations are happy: "Isn't this a lovely rug, where did you get it, why didn't I have one like it before?" etc.
Best wishes to you all, with our disrupted existences.
I've always said that if Mother gets to a stage where we can't leave her in the house on her own, or if she gets to be incontinent (we have the occasional tiny dropping on the carpet or bathroom floor at present, when she thinks it's wind but it isn't!), then we will give up and go home and find her a care home. We'll see. I think I've forgotten what our normal life was like. But I retired early and the state system doesn't yet think I'm entitled to a leisurely retirement, and that argument helps me to rationalise staying here for now.
I know we have it very easy, as Mother is contented and most of her boringly repetitive conversations are happy: "Isn't this a lovely rug, where did you get it, why didn't I have one like it before?" etc.
Best wishes to you all, with our disrupted existences.
Not much to add here, except yes, me too, I know how you all feel! I'm 46, only child with no immediate family other than mum (who's now 85), single, childess, jobless - my previously successful freelance "career", like many others here, has gone totally down the tubes.
Although I didn't live with her full time, I struggled to keep mum safe and well in her own home for 23 years since my dad died when I was a student. I'd say the dementia was coming upon her for at least the last 10 of those years, but she was (and remains) in denial and would not accept that she needed any help at home, which meant I gradually came to be running her entire life, minute by minute, often by proxy from 100 miles away - fielding daily, if not hourly, crises on the phone and ultimately having to go behind her back to liaise with GP, health visitors, social services and the carer I covertly hired to "visit" her a couple of times a week (which is the most she would accept without suspicion).
Following a year of escalating incidents, she finally had to go into residential care last September. I had to arrange all of it without her knowledge, let alone co-operation, and continue to do so. I have finally got her legal and financial affairs under control, but will have to pack up and sell her house on my own within the next year to meet the care costs. The house was burgled just before Christmas (fortunately nothing important was taken, but it has been an additional stress dealing with insurance, arranging repairs, clearing up, and having security equipment fitted). I spent Christmas alone in the burgled house in order to see to it and visit mum over the holiday. She knows nothing of any of this; when I visit (a 200-mile round trip at least every other week), she never remembers having seen me and is often aggrieved that I apparently "don't care", because I don't "stay the night" with her.
I was lucky to find her a place in a very good, civilised care home with great staff, good food, and pleasant surroundings. She refuses to have her hair washed or cut (not had it done since last July, when I struggled to trick her into her local salon) and has not bathed for literally years. She is now at least physically safe, has no responsibility for anything, and has people around to help and reassure her 24 hours a day. Of course she complains about the other residents (somehow she remains unaware that she's in a care home and rates the others as "not all there", while believing herself to be fine!). But her friends still visit, as does the carer once a week for my peace of mind, and I always make sure she has everything she needs. She will never have to do anything for herself ever again.
My life, on the other hand, is in ruins. Most of the time, I think I'm remarkably sane, considering. But if I stop to think about all the might-have-beens and compare myself with contemporaries who have families and successful careers, it is very hard to bear. It's not even as if mum appreciates any of it. Going through some old photos and letters in the house over Christmas, I was reminded of how she used to be - the "real" mum underneath the dementia; I realised how long it has been since she could relate to me in that way and that I had almost totally forgotten her as that warm, generous, kind and caring person. So much of her time and energy now is eaten away by paranoia and bitterness (often against those - myself included - who have done her no harm at all). That is perhaps the most upsetting thing of all. You could cope more easily with caring for a physically sick person, with whom you could still maintain a real, two-way relationship, and who, on some level, is appreciative of your efforts and at least co-operates and has some sense of your separate life.
All I can say to anyone reading this whose relative is still in the early stages, is please get some outside help before it's too late - for them and for you. They will never accept that they need help, so don't hang on in the hope of this; ultimately, you will have to make these decisions for them, so act sooner rather than later, to salvage at least some of your own life. I wish someone had said this to me years ago.
Although I didn't live with her full time, I struggled to keep mum safe and well in her own home for 23 years since my dad died when I was a student. I'd say the dementia was coming upon her for at least the last 10 of those years, but she was (and remains) in denial and would not accept that she needed any help at home, which meant I gradually came to be running her entire life, minute by minute, often by proxy from 100 miles away - fielding daily, if not hourly, crises on the phone and ultimately having to go behind her back to liaise with GP, health visitors, social services and the carer I covertly hired to "visit" her a couple of times a week (which is the most she would accept without suspicion).
Following a year of escalating incidents, she finally had to go into residential care last September. I had to arrange all of it without her knowledge, let alone co-operation, and continue to do so. I have finally got her legal and financial affairs under control, but will have to pack up and sell her house on my own within the next year to meet the care costs. The house was burgled just before Christmas (fortunately nothing important was taken, but it has been an additional stress dealing with insurance, arranging repairs, clearing up, and having security equipment fitted). I spent Christmas alone in the burgled house in order to see to it and visit mum over the holiday. She knows nothing of any of this; when I visit (a 200-mile round trip at least every other week), she never remembers having seen me and is often aggrieved that I apparently "don't care", because I don't "stay the night" with her.
I was lucky to find her a place in a very good, civilised care home with great staff, good food, and pleasant surroundings. She refuses to have her hair washed or cut (not had it done since last July, when I struggled to trick her into her local salon) and has not bathed for literally years. She is now at least physically safe, has no responsibility for anything, and has people around to help and reassure her 24 hours a day. Of course she complains about the other residents (somehow she remains unaware that she's in a care home and rates the others as "not all there", while believing herself to be fine!). But her friends still visit, as does the carer once a week for my peace of mind, and I always make sure she has everything she needs. She will never have to do anything for herself ever again.
My life, on the other hand, is in ruins. Most of the time, I think I'm remarkably sane, considering. But if I stop to think about all the might-have-beens and compare myself with contemporaries who have families and successful careers, it is very hard to bear. It's not even as if mum appreciates any of it. Going through some old photos and letters in the house over Christmas, I was reminded of how she used to be - the "real" mum underneath the dementia; I realised how long it has been since she could relate to me in that way and that I had almost totally forgotten her as that warm, generous, kind and caring person. So much of her time and energy now is eaten away by paranoia and bitterness (often against those - myself included - who have done her no harm at all). That is perhaps the most upsetting thing of all. You could cope more easily with caring for a physically sick person, with whom you could still maintain a real, two-way relationship, and who, on some level, is appreciative of your efforts and at least co-operates and has some sense of your separate life.
All I can say to anyone reading this whose relative is still in the early stages, is please get some outside help before it's too late - for them and for you. They will never accept that they need help, so don't hang on in the hope of this; ultimately, you will have to make these decisions for them, so act sooner rather than later, to salvage at least some of your own life. I wish someone had said this to me years ago.
speaking from the perspective of looking after a parent.
I (for many reasons) had councelling last summer. While going through this, many things came up. I was told that although I had a responsibility towards my mum I was NOT responsible for her. To be honest I didn't see the difference till it was fully explained to me
. Basicailly I had a responsibility to see my mum was cared for however I was not responsible for her care. I have done all I can to make sure mum is well cared for etc, but I will not do that level of care myself. I know I could not do it. And to perfectly honest (for reasons I won't go into on here) I bloody well don't see why I should. Harsh I know to those who don't know the full details, but I will not do it. And yes I do feel guilty at times for not doing.
I have told my daughter, should I go down that road, she must put me into a care home and not feel guilty about it. It is not her job to look after me when she grows up I didn't have her to do that. She is fine with that as she has seen how upsetting it is with her gran. My husband however is insistant that he will care for me should I become like mum..............he never does sodding listen to me
I think it's important to remember that everyone has different views of care for many different reasons
I (for many reasons) had councelling last summer. While going through this, many things came up. I was told that although I had a responsibility towards my mum I was NOT responsible for her. To be honest I didn't see the difference till it was fully explained to me
. Basicailly I had a responsibility to see my mum was cared for however I was not responsible for her care. I have done all I can to make sure mum is well cared for etc, but I will not do that level of care myself. I know I could not do it. And to perfectly honest (for reasons I won't go into on here) I bloody well don't see why I should. Harsh I know to those who don't know the full details, but I will not do it. And yes I do feel guilty at times for not doing.I have told my daughter, should I go down that road, she must put me into a care home and not feel guilty about it. It is not her job to look after me when she grows up I didn't have her to do that. She is fine with that as she has seen how upsetting it is with her gran. My husband however is insistant that he will care for me should I become like mum..............he never does sodding listen to me
I think it's important to remember that everyone has different views of care for many different reasons
Amen to the above.......................
I am a pensioner - 61 - looking after a pensioner 97
My sister was always the favourite and buzzed off to Australia over 40 years ago and it is me that - yes the stupid one - who is doing the caring (with help from carers else I could not cope), clearing up the 'accidents' (not urine) and washing soiled clothes & linen as a result etc etc.
My sister phones once a fortnight(ish) and thinks she is a dutiful daughter
Yes life sucks!!
I am a pensioner - 61 - looking after a pensioner 97
My sister was always the favourite and buzzed off to Australia over 40 years ago and it is me that - yes the stupid one - who is doing the caring (with help from carers else I could not cope), clearing up the 'accidents' (not urine) and washing soiled clothes & linen as a result etc etc.
My sister phones once a fortnight(ish) and thinks she is a dutiful daughter
Yes life sucks!!
speaking from the perspective of looking after a parent.
I (for many reasons) had councelling last summer. While going through this, many things came up. I was told that although I had a responsibility towards my mum I was NOT responsible for her. To be honest I didn't see the difference till it was fully explained to me
I have told my daughter, should I go down that road, she must put me into a care home and not feel guilty about it. It is not her job to look after me when she grows up I didn't have her to do that. She is fine with that as she has seen how upsetting it is with her gran. My husband however is insistant that he will care for me should I become like mum..............he never does sodding listen to me
I think it's important to remember that everyone has different views of care for many different reasons
I am always being told by professionsals to make sure that I look after myself. My hsb is 67 and I am his sole carer. Retirement plans after a lifetime of hard work have gone to pot. I can no longer have space to myself so the 'look after yourself' advice is a farce.
Hsb has deteriorated quickly since Xmas, will not accept respite, Every day says he says he is going home, asks me where I am going as does not recognize me as wife. is paranoid and on one occasion when I had to get out for some space he knocked on a neighbours door. Today this behaviour has been continual since mid day and with it being a Friday I am thinking it will be a long weekend before the CPN visits next week to monitor medication.
Hsb has deteriorated quickly since Xmas, will not accept respite, Every day says he says he is going home, asks me where I am going as does not recognize me as wife. is paranoid and on one occasion when I had to get out for some space he knocked on a neighbours door. Today this behaviour has been continual since mid day and with it being a Friday I am thinking it will be a long weekend before the CPN visits next week to monitor medication.
I think it's very different when it's a partner to when it's a parent.
I could not/would not have my mum live with me. Not when she was healthy & not now she has VasD.
Now if it were my husband, I would want to care for him as long as I could, and he would want the same if it were me. ( maybe it's because we chose to be together)
Of course, as we are all aware, this illness dictates how long we can manage.
As to our children, like other posters, we have made it clear to them, they are not responsible for us. It would be nice if they could try to find a good CH if needed & visit when possible.
(My words to both my sons was "If I get like Nanna, run!)
I could not/would not have my mum live with me. Not when she was healthy & not now she has VasD.
Now if it were my husband, I would want to care for him as long as I could, and he would want the same if it were me. ( maybe it's because we chose to be together)
Of course, as we are all aware, this illness dictates how long we can manage.
As to our children, like other posters, we have made it clear to them, they are not responsible for us. It would be nice if they could try to find a good CH if needed & visit when possible.
(My words to both my sons was "If I get like Nanna, run!)
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Hi everyone,
Same story for me. Managed to find a good home for Mum who is now safe, sound, well looked after & cared for with no worries or responsibilities as a result of which her dementia has stabilised.
Me on the other hand has had my life, such as it was, totally turned upside down trying to pick up the pieces & sort out the life she left behind. Am still wading through all her paperwork which is not made easy by the powers that be despite me having POA & I still have the small matter of her house to sell
Yes it sucks!
With much love & understanding to all who have posted on this thread,
Love Dottie xx
Same story for me. Managed to find a good home for Mum who is now safe, sound, well looked after & cared for with no worries or responsibilities as a result of which her dementia has stabilised.
Me on the other hand has had my life, such as it was, totally turned upside down trying to pick up the pieces & sort out the life she left behind. Am still wading through all her paperwork which is not made easy by the powers that be despite me having POA & I still have the small matter of her house to sell
Yes it sucks!
With much love & understanding to all who have posted on this thread,
Love Dottie xx
Another day in the life of Glamour Puss
Good news, I now have the 7th Cavalry, social services and occupational therapy, and Indesit with a new washer drier.
In reply to "me time" 100 years ago a woman's place was in the home, or workhouse, or on the streets. If there were no "me time" for anyone, there would be no art, philosphy and cup cakes !
Mum had two falls in two days, all those cup cakes make her bounce, no injury.
Now, do I keep Mum downstairs with bed, chair, commode and tv as she has fallen in the bath and toilet ? And get her bed moved downstairs.
Me time is hard work. Us time is going through old photo's and having a laugh !
Good news, I now have the 7th Cavalry, social services and occupational therapy, and Indesit with a new washer drier.
In reply to "me time" 100 years ago a woman's place was in the home, or workhouse, or on the streets. If there were no "me time" for anyone, there would be no art, philosphy and cup cakes !
Mum had two falls in two days, all those cup cakes make her bounce, no injury.
Now, do I keep Mum downstairs with bed, chair, commode and tv as she has fallen in the bath and toilet ? And get her bed moved downstairs.
Me time is hard work. Us time is going through old photo's and having a laugh !
But you married your husband for better or worse ...
Mum didn't want me, she wanted a cruise
Mum didn't want me, she wanted a cruise
I agree with Ellejay in that I also feel it is different if it is your husband/wife rather than your parent.
I went into this for better or worse so I want to keep David at home as long as I can. However, I think until you actually get to the difficult end stage you do not know whether you will be able to cope of whether it will be best for your loved one to be in residential care. It seems to me some people have a smoother ride than others and this seems to be more down to luck than anything we do. If it gets to a situation where I feel I cannot keep David safe at home then it might be a case of having to look at care homes.
Also, I did have a few months last Autumn where David was really poorly and I was getting very little sleep and found myself either in tears or shouting at him. I am lucky that he got better but realistically if he had not I could not have continued like that indefinitly- not even superwoman could have.
Tre
I went into this for better or worse so I want to keep David at home as long as I can. However, I think until you actually get to the difficult end stage you do not know whether you will be able to cope of whether it will be best for your loved one to be in residential care. It seems to me some people have a smoother ride than others and this seems to be more down to luck than anything we do. If it gets to a situation where I feel I cannot keep David safe at home then it might be a case of having to look at care homes.
Also, I did have a few months last Autumn where David was really poorly and I was getting very little sleep and found myself either in tears or shouting at him. I am lucky that he got better but realistically if he had not I could not have continued like that indefinitly- not even superwoman could have.
Tre
I have really struggled with my feelings of frustration, anger and even resentment, all followed up by a large side serving of guilt, over my parents care needs and having read some peoples experiences here, I am sorry so many of you are living a similar existence. However, I feel I have to thank you too, for making me feel less alone and for saying that it's not wrong to want to hang on to some kind of life outside caring.
I find it staggering that so many are living this existence, where plans, ambitions, desires and dreams are simply smashed to pieces and replaced with an at times, tortuous existence.
Mum is now in a CH after 7 years of gradual increased dependence on us. Dad's had a stroke, got COPD and multiple other chronic and life threatening illnesses, but remins at his home with a home help at lunch time. As my kids have become more independent so my parents have become dependent. At no point was I made to feel like I had a choice about caring for them. I had a boss who believed that to succeed, you needed to sacrifice your family and so I was forever torn and made to feel that whatever 'hat' I wore I was still a failure. I was a failed career girl, a lousy inattentive mother and a worse daughter. Redundancy in 09 simply meant I could accommodate the 'emergencies' better, but as I needed to work, I found myself having to take minimum wage work, where there was no understanding about domestics!
My dad believes it's my duty to care for them, so has no sense of sacrifice and defends my brothers absence because 'he's very busy'; and I'm not? Does my working life,plans, desires and aspirations not matter? Clearly they don't. Our lives have been parked for 7 years. No decisions are made without the words 'what about mum and dad?' echoing in the conversation. My brother lives free from this. He doesn't have to be carer, mother, employee, gardener etc.. by day and carer, accountant, house keeper, shopper etc by night.
I sank my redundancy into a University degree, believing I might get a shot at pursuing something I feel passionate about. I have 10 weeks of Uni left and instead of feeling a sense of excitement and optimism, I am flat, empty and wondering why I'm finishing. We had planned to move and set up a small business in a less expensive part of the country, part of a 10 year plan, but instead of moving in 2010 as planned, we were left facing the voice of 'what about mum and dad?' again. We've stayed nearly two more years, trying to live on a household income that's been cut by 2/3 and qualifying for no help every time we look for some. Our life savings and business start up money have been used to stay here, all so I could care for someone who doesn't know who I am and one who thinks it's my job to do so.
My brother has given my mum and dad 4 hours of his life in the last 2 years, but that's ok, because he lives an hour and half away and he's busy. But not too busy to see his wife's family and be less than half an hour from mum and dad .......
So forgive me, but I'm angry at being invisible, I'm angry that the quality of my life is valueless to the outside world, that it's ok for my kids to suffer listening to a lifetime of 'no we can't afford it' or, 'I have to go to grandma's' because of this wretched disease and that I have to constantly give my dad bad news about his life time of hard work and prudent money keeping. He doesn't get that he can't make choices with his finances, or his home, because in reality, his home is no longer his. It's a shame no one mentioned that to him when he was working a 6 day week to pay for it. His life is now defined by a day in front of an excruciatingly loud TV, surrounded by the 6 piles of hoarded junk mail and organisational begging letters, that give him a bizarre meaning to live.
My kids will not be going through this with me. Neither will I end up spending 20 years caring for kids, 20 for my parents, 10 for my husband, while scraping a frugal existence in a dead beat job, to be met by dementia at my retirement and spend my final days being loathed and resented by low paid carers in a home I neither know or own, but which I will pay for from the home I misguidedly thought I'd be able to secure my children's life with..
Sorry for the bitterness.
I find it staggering that so many are living this existence, where plans, ambitions, desires and dreams are simply smashed to pieces and replaced with an at times, tortuous existence.
Mum is now in a CH after 7 years of gradual increased dependence on us. Dad's had a stroke, got COPD and multiple other chronic and life threatening illnesses, but remins at his home with a home help at lunch time. As my kids have become more independent so my parents have become dependent. At no point was I made to feel like I had a choice about caring for them. I had a boss who believed that to succeed, you needed to sacrifice your family and so I was forever torn and made to feel that whatever 'hat' I wore I was still a failure. I was a failed career girl, a lousy inattentive mother and a worse daughter. Redundancy in 09 simply meant I could accommodate the 'emergencies' better, but as I needed to work, I found myself having to take minimum wage work, where there was no understanding about domestics!
My dad believes it's my duty to care for them, so has no sense of sacrifice and defends my brothers absence because 'he's very busy'; and I'm not? Does my working life,plans, desires and aspirations not matter? Clearly they don't. Our lives have been parked for 7 years. No decisions are made without the words 'what about mum and dad?' echoing in the conversation. My brother lives free from this. He doesn't have to be carer, mother, employee, gardener etc.. by day and carer, accountant, house keeper, shopper etc by night.
I sank my redundancy into a University degree, believing I might get a shot at pursuing something I feel passionate about. I have 10 weeks of Uni left and instead of feeling a sense of excitement and optimism, I am flat, empty and wondering why I'm finishing. We had planned to move and set up a small business in a less expensive part of the country, part of a 10 year plan, but instead of moving in 2010 as planned, we were left facing the voice of 'what about mum and dad?' again. We've stayed nearly two more years, trying to live on a household income that's been cut by 2/3 and qualifying for no help every time we look for some. Our life savings and business start up money have been used to stay here, all so I could care for someone who doesn't know who I am and one who thinks it's my job to do so.
My brother has given my mum and dad 4 hours of his life in the last 2 years, but that's ok, because he lives an hour and half away and he's busy. But not too busy to see his wife's family and be less than half an hour from mum and dad .......
So forgive me, but I'm angry at being invisible, I'm angry that the quality of my life is valueless to the outside world, that it's ok for my kids to suffer listening to a lifetime of 'no we can't afford it' or, 'I have to go to grandma's' because of this wretched disease and that I have to constantly give my dad bad news about his life time of hard work and prudent money keeping. He doesn't get that he can't make choices with his finances, or his home, because in reality, his home is no longer his. It's a shame no one mentioned that to him when he was working a 6 day week to pay for it. His life is now defined by a day in front of an excruciatingly loud TV, surrounded by the 6 piles of hoarded junk mail and organisational begging letters, that give him a bizarre meaning to live.
My kids will not be going through this with me. Neither will I end up spending 20 years caring for kids, 20 for my parents, 10 for my husband, while scraping a frugal existence in a dead beat job, to be met by dementia at my retirement and spend my final days being loathed and resented by low paid carers in a home I neither know or own, but which I will pay for from the home I misguidedly thought I'd be able to secure my children's life with..
Sorry for the bitterness.
For goodness sake Maizy, get away, you can't keep on like this and you are NOT invisible. No parent in their right mind would think it your duty to look after them, that is not reasonable or normal.
This is SO wrong. If you (and your brother) have a duty, then it is to see that your parents are taken care of. That doesn't mean you have to care for them yourself.
Move away. You'll then be in the same position as me. I've just done the five hour round trip to see my mum today, but I only do it every 5 -6 weeks. I've been doing it now for nine years and I am so relieved I didn't put my life on hold and more important, I DO NOT FEEL GUILTY.
It is, as others on here will testify, possible to be a distance carer. You just have to put management strategies in place. And if your dad can't cope, then the CH option is available for him too.
You have one life; don't waste it. You are entitled to follow your dreams. Everyone here on TP will help you.
How do you stop feeling guilty for wanting more? It feels like I'm being selfish.
I don't think dad means to put the pressure on, maybe it's just a generation thing, I don't know. He is a real traditionalist, he was the 'hunter gatherer' and mum was the 'homemaker'. He did all the money and bills and gave my mum weekly 'housekeeping' and that was their roles. Mum worked term time once I was school age. He never did anything around the house, that he regarded as 'womans work' and I think caring is just an extension of that.
We had a conversation a few weeks ago and he said to me then that I'd be alright, as I have my daughter! I told him I have 2 sons as well, but they all have their own lives to lead and they will not be giving that up for us!
I don't think dad means to put the pressure on, maybe it's just a generation thing, I don't know. He is a real traditionalist, he was the 'hunter gatherer' and mum was the 'homemaker'. He did all the money and bills and gave my mum weekly 'housekeeping' and that was their roles. Mum worked term time once I was school age. He never did anything around the house, that he regarded as 'womans work' and I think caring is just an extension of that.
We had a conversation a few weeks ago and he said to me then that I'd be alright, as I have my daughter! I told him I have 2 sons as well, but they all have their own lives to lead and they will not be giving that up for us!
Another one here - in my forties (as is DH), one son of 22 moved out to go to uni and since graduating has bought a flat in London with his g/f. I am an only child and my mum was diagnosed with Alzheimer's about six years ago. The family was already acquainted with the disease 'cos her mum had it back when I was a child......so childhood memories are clouded by recollections of grandma's constant 'funny' behaviour as they spent much of their time at our house - mum had a brother who never moved out of the parental home (he died there aged 80 in 2008) yet she did all the caring
In early 2007 my DH had a breakdown and attempted suicide just as our son was about to take his 4 A levels and as a result we took the drastic decision to sell our large expensive house and move to a cheaper part of the country where we could be mortgage-free. It was totally the wrong decision to make as we ended up a six hour round trip away from my parents......and I don't drive......plus we absolutely hated life there as we had no connections in the area.
During the following years DH suffered from repeated anxiety attacks and mental exhaustion, I had lots of 'women's problems', caused by stress........and my mum's condition deteriorated with only dad to care for her, but as we only managed to visit once every 4-6 weeks we weren't really aware how bad things had become. Last spring we'd had enough so decided to try to move closer to them again but the only job DH could find still entailed us being a three hour round trip from my parents.
Last May we made the move and love our new home - although doing it up is a labour of love.......we don't do things by halves but bought a large thatched renovation project which we intended to do majority of the work on ourselves since then though my parents have become steadily worse culminating first with my dad totally losing it in October due to a urine infection and more recently when mum became I'll and had to be admitted to hospital. Prior to this they both refused any offers of outside help - as other posters have said my parents were also fiercely independent and private people....they also hated to share any financial or other 'private' business with us and were never keen on DH even though he has a heart of gold and would do anything for them.....he was always known by them as the '@rsehole'
Following on from their recent bouts of ill health we took the decision to get carers in to help my dad cope with mum......but this is completely begrudged by them both and I have had to reduce the daily visits down from 4 to 2 'cos dad has been complaining that the are useless and unnecessary........he has been lying by saying they don't come or don't do as he asks, which is complete rubbish. He expects us to drive over at the drop of a hat and will get DH to go over after work to fix a heater.....that turns out to merely be switched off!
On top of this, DH's dad who was widowed in 2006 and who lives with one of DH's five siblings and who had until recently been in excellent health at the age of 80, had to be sectioned ten days ago because he was exhibiting signs of paranoid and dangerous behaviour.....it was feared he was suffering from a brain tumor but today the results have come back and there is nothing physically wrong with him, which is of course excellent news although we still don't know what has caused his sudden decline
So to sum up, we have between us three parents who need round the clock care and who are a constant cause of worry and concern. As others have posted DH and I thought that now our son was happily settled in a relationship with his own home, we could spend some 'me' time relaxing - well not really with our house to do up - but this is obviously not meant to be. Again as others have said we have already said to our son that if history repeats itself (and I'm convinced it'll get me as it did mum and my grandma) that he should book us one way tickets to dignitas.......
I don't know it just seems so sad that people work hard all their lives onl to have to either care for a partner or a parent (or three, lol!) with this awful disease
In early 2007 my DH had a breakdown and attempted suicide just as our son was about to take his 4 A levels and as a result we took the drastic decision to sell our large expensive house and move to a cheaper part of the country where we could be mortgage-free. It was totally the wrong decision to make as we ended up a six hour round trip away from my parents......and I don't drive......plus we absolutely hated life there as we had no connections in the area.
During the following years DH suffered from repeated anxiety attacks and mental exhaustion, I had lots of 'women's problems', caused by stress........and my mum's condition deteriorated with only dad to care for her, but as we only managed to visit once every 4-6 weeks we weren't really aware how bad things had become. Last spring we'd had enough so decided to try to move closer to them again but the only job DH could find still entailed us being a three hour round trip from my parents.
Last May we made the move and love our new home - although doing it up is a labour of love.......we don't do things by halves but bought a large thatched renovation project which we intended to do majority of the work on ourselves
since then though my parents have become steadily worse culminating first with my dad totally losing it in October due to a urine infection and more recently when mum became I'll and had to be admitted to hospital. Prior to this they both refused any offers of outside help - as other posters have said my parents were also fiercely independent and private people....they also hated to share any financial or other 'private' business with us and were never keen on DH even though he has a heart of gold and would do anything for them.....he was always known by them as the '@rsehole' Following on from their recent bouts of ill health we took the decision to get carers in to help my dad cope with mum......but this is completely begrudged by them both and I have had to reduce the daily visits down from 4 to 2 'cos dad has been complaining that the are useless and unnecessary........he has been lying by saying they don't come or don't do as he asks, which is complete rubbish. He expects us to drive over at the drop of a hat and will get DH to go over after work to fix a heater.....that turns out to merely be switched off!
On top of this, DH's dad who was widowed in 2006 and who lives with one of DH's five siblings and who had until recently been in excellent health at the age of 80, had to be sectioned ten days ago because he was exhibiting signs of paranoid and dangerous behaviour.....it was feared he was suffering from a brain tumor but today the results have come back and there is nothing physically wrong with him, which is of course excellent news although we still don't know what has caused his sudden decline
So to sum up, we have between us three parents who need round the clock care and who are a constant cause of worry and concern. As others have posted DH and I thought that now our son was happily settled in a relationship with his own home, we could spend some 'me' time relaxing - well not really with our house to do up - but this is obviously not meant to be. Again as others have said we have already said to our son that if history repeats itself (and I'm convinced it'll get me as it did mum and my grandma) that he should book us one way tickets to dignitas.......
I don't know it just seems so sad that people work hard all their lives onl to have to either care for a partner or a parent (or three, lol!) with this awful disease
Maybe you have to ask yourself the question "Why am I allowing what my parents want to be more important than what I want?"
Carers have rights too and reading the stories on TP, that's all too often overlooked. You have the absolute right (legally, I understand) to say I don't want to be a carer. You are not the one being selfish - your dad is, and if you allow it to go on there's a danger than in years to come, you will have subconsciously given your sons 'permission' to assume that their sister will look after you and your husband too. The cycle needs to be broken. Your dad may be disappointed and upset - but the current situation means that it's you who is disappointed and upset. Why is that any more acceptable?
Your father has needs (which you and your brother can sort out by calling in help) and wants (which is an entirely different issue and these are NOT your responsibility).
BTW, my dad used to be horrified that my cousin's husband did the ironing...willingly, I might add. We had words about it on occasion when I said I didn't realise that girls were born with an iron welded to their hand, but he still wouldn't accept his views were outdated and wrong.
I sometimes look at how much my son and soon to be son-in-law are expected to do around the house compared to what I did for my OH and shudder - but I have the sense to keep my mouth shut and do not pass comment, even in jest. Women are expected to bring in a wage as well these days so it's inevitable that male and female roles will evolve.
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Thanks Chemmy. I think the disease has scarred us all and I would be horrified if I thought my son's subconsciously approved of my daughter stepping up if care is needed. I have sat down and told all three of them they won't be going through it and as Nelliewops has said, a trip to Switzerland has been mentioned.
Nelliewops, I'm sorry you are going through it x3. We've lived through the 1 step forward 2 back with my parents. Dad wouldn't have help in at first, we had months of problems. He would agree at meetings that help would come in, then lock the doors and refuse to let the carers in, saying they were fine. I'd get phone calls from the care company and social workers saying they can't get in and then dad would call the company and complain about the girls, telling them he won't have specific ones in the house because they are useless.
He shouted at me Friday when I said I was going to set up standing orders at the bank to pay his credit cards etc.., saying I wasn't to, because he wants to pay people when it suits him. I've told him I can't get in the car and drive over with the cheque book every day! I feel like I'm going behind his back and I am, because I have to set payment arrangements up for my convenience. I'm trying to introduce changes gently but he does make it incredibly difficult. I thought things would ease up when mum went into a CH, but they haven't. It's almost worse because dad still has lots of fight in him and has always been in control, where as mum just lost comprehension quickly.
Social services won't come out again to do an assessment of needs as we have 'fixed' the problem ourselves getting the carers in. It effectively means his care needs are being met, so there's no need for their involvement. They said he might be eligible for meals on wheels after mum went into care last year, but we tried that when mum was at home and dad doesn't eat them. He just puts them in the freezer for another day We had to get carers in, as he wasn't able to get food for himself and my shifts at work, meant I couldn't get over daily to get him a meal. Dad's social worker was off long term and I was still waiting to hear 3 weeks after mum had gone into care and the carers had stopped coming. I couldn't wait any longer for his case to be re-allocated as he was not getting a hot meal. Because we acted and got the carers back in, we fixed the problem. Thy don't get that the need is there if the carers don't come in. He already had a house keeper, but he was putting on her terribly while mum was at home, telling her to get mum up and do things way outside her house cleaning role. I knew nothing of this until the day mum went into care and was horrified. I told dad he was way out of line putting her in that position, she was neither qualified nor comfortable doing personal care and she should never have been asked. He didn't see the problem, just wanted the job done and he wasn't going to do it, ( even assuming he was physically able to).
Nelliewops, I'm sorry you are going through it x3. We've lived through the 1 step forward 2 back with my parents. Dad wouldn't have help in at first, we had months of problems. He would agree at meetings that help would come in, then lock the doors and refuse to let the carers in, saying they were fine. I'd get phone calls from the care company and social workers saying they can't get in and then dad would call the company and complain about the girls, telling them he won't have specific ones in the house because they are useless.
He shouted at me Friday when I said I was going to set up standing orders at the bank to pay his credit cards etc.., saying I wasn't to, because he wants to pay people when it suits him. I've told him I can't get in the car and drive over with the cheque book every day! I feel like I'm going behind his back and I am, because I have to set payment arrangements up for my convenience. I'm trying to introduce changes gently but he does make it incredibly difficult. I thought things would ease up when mum went into a CH, but they haven't. It's almost worse because dad still has lots of fight in him and has always been in control, where as mum just lost comprehension quickly.
Social services won't come out again to do an assessment of needs as we have 'fixed' the problem ourselves getting the carers in. It effectively means his care needs are being met, so there's no need for their involvement. They said he might be eligible for meals on wheels after mum went into care last year, but we tried that when mum was at home and dad doesn't eat them. He just puts them in the freezer for another day
We had to get carers in, as he wasn't able to get food for himself and my shifts at work, meant I couldn't get over daily to get him a meal. Dad's social worker was off long term and I was still waiting to hear 3 weeks after mum had gone into care and the carers had stopped coming. I couldn't wait any longer for his case to be re-allocated as he was not getting a hot meal. Because we acted and got the carers back in, we fixed the problem. Thy don't get that the need is there if the carers don't come in. He already had a house keeper, but he was putting on her terribly while mum was at home, telling her to get mum up and do things way outside her house cleaning role. I knew nothing of this until the day mum went into care and was horrified. I told dad he was way out of line putting her in that position, she was neither qualified nor comfortable doing personal care and she should never have been asked. He didn't see the problem, just wanted the job done and he wasn't going to do it, ( even assuming he was physically able to).
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'a partner or a parent (or three, lol!)' (see previous post above which I was trying to quote from)
try two parents, one partner, an aging border collie and then a spaniel puppy on my birthday 'because you have so many problems mum' .... I don't laugh as much as I cry but I do laugh
try two parents, one partner, an aging border collie and then a spaniel puppy on my birthday 'because you have so many problems mum' .... I don't laugh as much as I cry but I do laugh
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