wounder how many other people are in my boat ,were there wife /husband has had enough, -married you not your mother/father,-- i can see their point . full time care for someone with dementia does tend to take over your life
how many other halfs have had enough
- Thread starter spraypaint
- Start date
Yes, dementia will takes everything you can give - and then some more!
The thing is that you have to build in some me time/ respite, or you will end up with carers breakdown.
Carers, befrienders, day care, respite days/weeks in a care home, maybe permanent care home eventually; its no good trying to be a martyr. I know that our PWDs dont want to do it and it makes us feel guilty, but there comes a time when needs supersedes wants and you count too, you know.
The thing is that you have to build in some me time/ respite, or you will end up with carers breakdown.
Carers, befrienders, day care, respite days/weeks in a care home, maybe permanent care home eventually; its no good trying to be a martyr. I know that our PWDs dont want to do it and it makes us feel guilty, but there comes a time when needs supersedes wants and you count too, you know.
Yes I totally agree with canary. Dementia caring for a loved one will totally absorb you and like me will reach carers breakdown and no alternative but to seek help and make that awful decision that full time care is the only option. After nearly a year of mum being in permanent residential there is not a day goes by where I feel so guilty that I couldn’t have kept her at home to look after her. She is now in the final stages and confined to bed and I know deep down that I did what she needed not wanted but it is heartbreaking to watch her fade away. But I can come away in the knowledge that she is in safe hands and being well cared for 24 hours a day and have a life albeit wishing that mum was back home. Please don’t reach carers breakdown like I did, we all want to do the best for our loved ones but it can get to the stage where we need much more help.
My OH refused to have my father living with us. We would have had to move as our cottage would not have been suitable for an elderly person with dementia.
My father was living abroad when diagnosed and wouldn't come back to the UK, so I was flying back and forth like a bat out of hell. I wondered whether -- if we sold our house and moved further out, with an annex for him, and he paid for carers to come in morning and evening -- I could entice him back. My OH put his foot down. He said that while my father might agree to this, in practice, he would not accept paid carers and would rely on us for everything. I understood where my OH was coming from because even without dementia, my father had a way of announcing when and for how long he was coming to stay and then sit in a chair expecting to be waited on hand and foot. As a busy working woman, I'd ask him to please just put his breakfast bowl in the dishwasher. No. He was suddenly incapable of doing what he did at home.
Ultimately, I took the view that I had made vows to my OH and he came first. He'd put up with a lot from my parents throughout our marriage anyway. (See above plus much, much worse.) Perhaps, if they'd been nicer to him, he'd have felt differently? Who knows? As it was, my OH offered me a lot of emotional and practical support during the couple of years I was long-distance caring and I needed it because I came close to breakdown anyway. Had it been live-in caring, I think both of us would have suffered.
My father was living abroad when diagnosed and wouldn't come back to the UK, so I was flying back and forth like a bat out of hell. I wondered whether -- if we sold our house and moved further out, with an annex for him, and he paid for carers to come in morning and evening -- I could entice him back. My OH put his foot down. He said that while my father might agree to this, in practice, he would not accept paid carers and would rely on us for everything. I understood where my OH was coming from because even without dementia, my father had a way of announcing when and for how long he was coming to stay and then sit in a chair expecting to be waited on hand and foot. As a busy working woman, I'd ask him to please just put his breakfast bowl in the dishwasher. No. He was suddenly incapable of doing what he did at home.
Ultimately, I took the view that I had made vows to my OH and he came first. He'd put up with a lot from my parents throughout our marriage anyway. (See above plus much, much worse.) Perhaps, if they'd been nicer to him, he'd have felt differently? Who knows? As it was, my OH offered me a lot of emotional and practical support during the couple of years I was long-distance caring and I needed it because I came close to breakdown anyway. Had it been live-in caring, I think both of us would have suffered.
My husband has a potentially life threatening illness, diagnosed in 2004.
My parents lived just 5 mns away, but as they were getting older and still paying a small mortgage, they sold their house, paid off their mortgage and built a small granny flat on our property. This was 2007.
The intention was to help me with my young children due to my husbnds illness, and financially it helped them.
Mum, was then diagnosed with a form of Leukemia in 2011, early stage bowel cancer 2012, and then Alzheimers 2013. I was Mums main carer.
By 2016, caring for Mum and coping with Dad caring for Mum, it all got too much for me, and my husband and children were coming off second best.
I do think because of my husbands health, he understood, but it did still have quite an impact on our relationship.
All I ever talked about was Mum & Dad. My days revolved around organising Mums days, and on my days off and on weekends it was taken up, with taking Mum out. It got to the point, where he didn't want to talk about or know about anything relating to my parents.... unless urgent.
We couldn't go out or plan a holiday unless my sister or brother could be on hand.
I came down with shingles, DH had a major surgery coming up, Mum was booked in for Respite Care, but fhe way it worked out she stayed permanently and has been in care 16 mnths.
My parents lived just 5 mns away, but as they were getting older and still paying a small mortgage, they sold their house, paid off their mortgage and built a small granny flat on our property. This was 2007.
The intention was to help me with my young children due to my husbnds illness, and financially it helped them.
Mum, was then diagnosed with a form of Leukemia in 2011, early stage bowel cancer 2012, and then Alzheimers 2013. I was Mums main carer.
By 2016, caring for Mum and coping with Dad caring for Mum, it all got too much for me, and my husband and children were coming off second best.
I do think because of my husbands health, he understood, but it did still have quite an impact on our relationship.
All I ever talked about was Mum & Dad. My days revolved around organising Mums days, and on my days off and on weekends it was taken up, with taking Mum out. It got to the point, where he didn't want to talk about or know about anything relating to my parents.... unless urgent.
We couldn't go out or plan a holiday unless my sister or brother could be on hand.
I came down with shingles, DH had a major surgery coming up, Mum was booked in for Respite Care, but fhe way it worked out she stayed permanently and has been in care 16 mnths.
I took early retirement because John at 11 years older needed to retire and wouldn’t without me.
Two years later his handicapped sister decided to retire, return to Scotland and live with us. I absolutely refused. As it was she stayed with us for three months until I could get sheltered housing organised and for the next dozen years she took over Johns life.
People with an illness or disability can be very demanding and selfish. My SIL does not see me as an individual but as an adjunct to her brother. I support her in those things she really can’t handle but for the rest I step well back. She’s doing fine without him now.
Two years later his handicapped sister decided to retire, return to Scotland and live with us. I absolutely refused. As it was she stayed with us for three months until I could get sheltered housing organised and for the next dozen years she took over Johns life.
People with an illness or disability can be very demanding and selfish. My SIL does not see me as an individual but as an adjunct to her brother. I support her in those things she really can’t handle but for the rest I step well back. She’s doing fine without him now.
We took on my mum with the total understanding that if my partner felt it was all too much then she would need to go into care. My brother did not like this (financial reasons but this is not the place for it) feeling that we should be prepared to look after her to the end, no matter what. But as my brother has had zero input since mum moved in (seen her three times in almost four years) we went ahead and moved her in with us, then moved house to accommodate her needs. My partner and I discuss this at all times. He is my rock and also talks sense when it gets a bit much. Obviously there are times when I am reduced to screaming point but he calmly deals with my meltdown and helps me analyse what has caused it (i.e. minor storms in teacups or something fundamental that needs attention). As she continues to decline I can see a time, soon, when I will call a halt to all this and she will need to go into care. I will not feel guilty about this as I think I and my partner have done all we can to get her over the time when she knew she was losing her memory. Now that memory is pretty much gone and I think that if she went into a home she would just accept it.
My partner and I need a holiday and this needs to be booked in advance and planned (neither of us are spring chickens) and must not rely on a last minute arrangement when the care home can take her for respite; I need to get out and walk more and also get back to Pilates and yoga; it would be nice to watch tele together for a change, not me sitting with her in the evenings.
At the moment caring is my 'life' (alongside working part time and all the other things that need to be attended to). Frankly, I feel I've done my bit.
My partner and I need a holiday and this needs to be booked in advance and planned (neither of us are spring chickens) and must not rely on a last minute arrangement when the care home can take her for respite; I need to get out and walk more and also get back to Pilates and yoga; it would be nice to watch tele together for a change, not me sitting with her in the evenings.
At the moment caring is my 'life' (alongside working part time and all the other things that need to be attended to). Frankly, I feel I've done my bit.
Sadly I agree with all - oh has had enough Mum is all I talk about cos that is all I do.
We are on the edge of staying together. I don’t see it lasting.
Agh! Dementia. Ooh but don’t forget it’s not a disability, grrrrrr.
We are on the edge of staying together. I don’t see it lasting.
Agh! Dementia. Ooh but don’t forget it’s not a disability, grrrrrr.
When mum was diagnosed and they told us care 4x a day (she’s self funding) she said no, I told her straight, no option that it would be residential care, she lived in Devon, me in Kent. I have a 3storey house she’s knackered her knee line dancing, no option. Us move to Devon, love my current house, but the real total reason was OH and she are flame and petrol. I’d have lost both, he’d walk and she and I would last a week. Not a decision I liked. Even now OH says “let the home deal with her”
My mil and fil died within two weeks of each other, they were independent to the end. OH never had to face them becoming dependent, so he Doesn’t see any problem “just shut the door and problem will vanish”
I cannot believe the strength that so many of you show in dealing with PWD.
I know I couldn’t have.
My mil and fil died within two weeks of each other, they were independent to the end. OH never had to face them becoming dependent, so he Doesn’t see any problem “just shut the door and problem will vanish”
I cannot believe the strength that so many of you show in dealing with PWD.
I know I couldn’t have.
Hi spraypaint,
Yes, I think I once saw a post on here saying their other half was gone as soon as they realized they were no longer going to be the centre of attention.
Yes, I think I once saw a post on here saying their other half was gone as soon as they realized they were no longer going to be the centre of attention.
The saddest thing of all. Speaking as a parent, the most devastating thought would be that my only daughter lost her own husband because of the overwhelming stress of looking after me. If this is where you are, are you really sure that this is what your mother would want for you?
Mine is more like @care2share has said,it’s because he’s no longer centre of attention. I understand nevertheless, i’m good but not good enough to be in two places at once!
He does care for Mum and is upset by the whole thing.
I struggle with my Mum not being cared for she is at the stage where she is frightened and needs reassurance when the dementia bully takes a grip. That’s why I’m with her so much. How can you let someone be that frightened and ignore it.
Oh is not my husband, an 11 year relationship.
We’ll get there and what will be will be. x
He does care for Mum and is upset by the whole thing.
I struggle with my Mum not being cared for she is at the stage where she is frightened and needs reassurance when the dementia bully takes a grip. That’s why I’m with her so much. How can you let someone be that frightened and ignore it.
Oh is not my husband, an 11 year relationship.
We’ll get there and what will be will be. x
I can't speak for anyone else, but I can absolutely tell you this is indeed the case for my husband and myself. Unlike you, my MIL has paid lip service to the 'oh, I don't want to interrupt your lives! That makes me feel bad!' bit. But when it comes down to it, she is absolutely content to see our marriage, careers and lives ruined. She is entirely happy to see us split-up, and her son back at home, clipping her toenails, making her meals, entertaining her every whim.
Yes, that's what my MIL wants for him. And for us. She pretends it's 'devastating' to her (which, of course, only adds to the guilt trip). But she wouldn't have it any other way. Pre and post dementia.
I guess that if that is the situation, it would make more determined not to let her have her way. It sounds like emotional blackmail of the worst kind (at least pre-dementia) and I wouldn’t feel guilty for wanting to live my own life. Easy for me to say I know, but you do not have to follow her script and really why should you if she was that selfish. People do reap what they sow.
My mother-in-law is 92 with mixed dementia she lives on her own nearby she is self funding. Throughout the whole of our marriage she has been a nasty controlling self-centered individual who spent the last 35 years trying to drive a wedge between my husband and myself . It quickly became apparent many years ago that she would have just loved my husband to put her needs first never mind about his own career his own wishes interests his own marriage. She's always been a very difficult personality and my husband and I made a decision many many years ago long time before the dementia diagnosis that we would keep her at arm's length for our own sanity . She has a daughter but she lives in the USA and she realised many years ago before she moved there that she would have been in the same position. Dementia diagnosis came as no surprise to us although it took us a long time to twig that was anything more than just her nasty personality.
There was absolutely no way that she was ever going to move in with us. We would never have had a life and although she said at the time she would never interfere with our lives this clearly was never going to be the case she's simply was never independent enough not try and be with us all the time. Her main aim in life has always been to have my husband with her at all times.
Now with a dementia diagnosis we are so glad that we made that decision to not to have her living with us. We make sure that she is cared for she has carers in three times a day we make sure she has enough food and we sort out her finances and her welfare but we're not going to let her take her over our lives.
Wow you have been doing an amazing job. And yes you have done enough. It is time to invest in yourself. Don't let pilates and yoga go, it is always so hard getting back into the habit after a break. Walk more now.... and watch TV with your other half. If you don't invest in yourself and look after your health, you will get seriously ill. Sorry to hear about your brother. Yes, it has absolutely nothing to do with him - he hasn't earned the right to have an opinion on how your mother is cared for. Make sure you get a care home nearby so you can visit often to begin with until your mum is settled in.
I certainly reached a stage where I just could not cope with my FiL - who I was always very fond of - any more - endlessly disturbed nights and awful rages were just two reasons. And to be honest, although I did feel bad about the care home decision, my main feeling was one of profound relief.
Some years later, after my mother reached the stage in her dementia where she really needed someone there 24/7 (she had been in her own home until then) it was again time for a care home. Yes, I did feel guilty, but at the same time I knew I could not cope with it again - and there was also my husband, still working long hours in a demanding job. He was always very good and patient, but I wasn't going to expect him to put up with disturbed nights and all the rest of it - no peace during evenings and weekends, never being able to leave her even for half an hour, etc.
There often comes a point where 24/7 care really does mean just that - someone on hand ALL day, ALL night, 365 days a year, and that is often so very hard, exhausting and stressful to provide in a normal home setting.
Some years later, after my mother reached the stage in her dementia where she really needed someone there 24/7 (she had been in her own home until then) it was again time for a care home. Yes, I did feel guilty, but at the same time I knew I could not cope with it again - and there was also my husband, still working long hours in a demanding job. He was always very good and patient, but I wasn't going to expect him to put up with disturbed nights and all the rest of it - no peace during evenings and weekends, never being able to leave her even for half an hour, etc.
There often comes a point where 24/7 care really does mean just that - someone on hand ALL day, ALL night, 365 days a year, and that is often so very hard, exhausting and stressful to provide in a normal home setting.
