Am I the only one who wants to walk away from this person I do not know any more?
Am I the only one who does not know why she is staying?
Am I the only one who does not know why she is staying?
If you partner has dementia - how many of us want to walk away?
- Thread starter maryjoan
- Start date
Yes sometimes I do want to run away and scream "what about me?"But he was the love of my life, my reason for being, the one who made me smile and was always there for me. Now I am there for him, to me love is to live for someone and despite this horror in our lives, I love him and he is still able to say he loves me.
Hi @maryjoan ,
I know the reasons why I am staying, even though I think I'd better go away all day, all days.
Marrying him was a mistake. Our relationship could work reasonably well as long as we spent together holidays and weekends only.
Well, now I find myself (after marriage in 2009 and retirement in 2014) in situation of "home arrest".
After my retirement , I accepted to live with him in his house in the country, where he had been living for some years since he retired ( he is 14 years older than me).
We do not have relatives or friends or acquaintances here. Not a soul to have a chat or a cup of coffee with.
As I said, I know why I am staying.
Sense of duty and economic considerations.
I do not know how long they will have power on me.
I am currently living a day at a time
Oh @margherita, I've read some of your postings and didn't realise how hard you are struggling.
There's been a few times I've thought about just driving off to Cornwall or back to the west of Scotland to escape the stresses and strains of caring, but memories of all the lovely things C did for me and everyone else keeps me here. I'm sorry you're having a hard time MaryJoan, and hope the support you will get on here will help you through it. .
There's been a few times I've thought about just driving off to Cornwall or back to the west of Scotland to escape the stresses and strains of caring, but memories of all the lovely things C did for me and everyone else keeps me here. I'm sorry you're having a hard time MaryJoan, and hope the support you will get on here will help you through it. .
It's tragic, that selfish streak and total lack of empathy that seems so common in PWD has once again put me in a position where I have had to assert my existence as an individual and spouse rather that just a carer last night and today. It doesn't make me want to walk away but it hurts and doesn't endear my wife to me at the moment.
I wanted many times to walk away from dementia but not my husband. I was lucky, I had a good marriage and a good life. A happy and close family. We were married for 50 years, 11 of them with dementia. So when things were bad I had good memories to fall back on. I cant begin to think how awful it must be without those good memories to get us through.
I understand, karaokePete, and Margherita and NaeSporran, and you as well DennyD, and thank you - I am so glad I can come on here and have a moan.
I have only known my other half for seven and a half years and he was lovely when I first met him, but I reckon this dementia has been taking him away from me for about 4 years now, at least.
Add to the mix this flaming awful ileostomy he has had since last year and that he cannot deal with.....
I think one of the things that really gets to me is that keeping the home clean and tidy is so difficult with him. He has increasingly silly ( to me but not to him) habits. At 6 foot 2 inches, he has now decided that it is easier to pee in the bathroom wash basin than down the toilet - I have tried reasoning with him but we all know that does not work! He has also decided that he needs for some weird reason ( I know, not his fault!) that he needs a row of folded up loo paper all along the top of the toilet cistern - completely does my head in. The towels are his and his alone - I take mine into the bathroom every time I go there - quite normal for lots of households - but he won't let me wash his and they smell- I sneak them out when I can. We only have the one bathroom, sadly.
On a different topic, he does not like the light on the dishwasher being on. Our dishwasher pauses part way through the cycle, and he switches the light off, which means he switches the machine off, and then the dishes don't finish being washed/dried. The dishwasher is my one luxury !!
All sounds very petty as I read it, but put it all together along with all the other things, and one needs a rant now and again. Yes, I struggle, I feel I want to go and live up north where I come from, I feel his children should be doing more, I feel very isolated.
Our Direct Payments have run out. I phoned them 5 weeks ago, and they said they wouldn't do anything till the money had run out. In all fairness, they did ring back and do a telephone interview, but then said they would have to get someone to come out and see us to do another Care Plan - I phoned last week and they said they had not got any further with it, and it has not been allocated to anyone.....
My dear OH is happy with that as he hates going for respite anyway!!
Oh well, the springs bulbs are doing their best to flower, so all is not lost
I have only known my other half for seven and a half years and he was lovely when I first met him, but I reckon this dementia has been taking him away from me for about 4 years now, at least.
Add to the mix this flaming awful ileostomy he has had since last year and that he cannot deal with.....
I think one of the things that really gets to me is that keeping the home clean and tidy is so difficult with him. He has increasingly silly ( to me but not to him) habits. At 6 foot 2 inches, he has now decided that it is easier to pee in the bathroom wash basin than down the toilet - I have tried reasoning with him but we all know that does not work! He has also decided that he needs for some weird reason ( I know, not his fault!) that he needs a row of folded up loo paper all along the top of the toilet cistern - completely does my head in. The towels are his and his alone - I take mine into the bathroom every time I go there - quite normal for lots of households - but he won't let me wash his and they smell- I sneak them out when I can. We only have the one bathroom, sadly.
On a different topic, he does not like the light on the dishwasher being on. Our dishwasher pauses part way through the cycle, and he switches the light off, which means he switches the machine off, and then the dishes don't finish being washed/dried. The dishwasher is my one luxury !!
All sounds very petty as I read it, but put it all together along with all the other things, and one needs a rant now and again. Yes, I struggle, I feel I want to go and live up north where I come from, I feel his children should be doing more, I feel very isolated.
Our Direct Payments have run out. I phoned them 5 weeks ago, and they said they wouldn't do anything till the money had run out. In all fairness, they did ring back and do a telephone interview, but then said they would have to get someone to come out and see us to do another Care Plan - I phoned last week and they said they had not got any further with it, and it has not been allocated to anyone.....
My dear OH is happy with that as he hates going for respite anyway!!
Oh well, the springs bulbs are doing their best to flower, so all is not lost
Almost 50 years married, she has talked of suicide before we married, she had a nervous breakdown in 1976 and I think I have been her carer on and off since then.
She still talks of suicide sometimes but then cheers up.
I do feel like running away but would feel guilty if anything happened to her so I am stuck with this life.
I have friends from work before I retired who are all in far off places who I keep in touch with by facebook, they are not aware of any problems I just keep it to myself and feel lucky that I have never suffered from depression and always have a positive outlook but I do get worn down some days.
It's good to be able to rant on a little on here with others who have similar problems,
She still talks of suicide sometimes but then cheers up.
I do feel like running away but would feel guilty if anything happened to her so I am stuck with this life.
I have friends from work before I retired who are all in far off places who I keep in touch with by facebook, they are not aware of any problems I just keep it to myself and feel lucky that I have never suffered from depression and always have a positive outlook but I do get worn down some days.
It's good to be able to rant on a little on here with others who have similar problems,
I understand, karaokePete, and Margherita and NaeSporran, and you as well DennyD, and thank you - I am so glad I can come on here and have a moan.
I have only known my other half for seven and a half years and he was lovely when I first met him, but I reckon this dementia has been taking him away from me for about 4 years now, at least.
Add to the mix this flaming awful ileostomy he has had since last year and that he cannot deal with.....
I think one of the things that really gets to me is that keeping the home clean and tidy is so difficult with him. He has increasingly silly ( to me but not to him) habits. At 6 foot 2 inches, he has now decided that it is easier to pee in the bathroom wash basin than down the toilet - I have tried reasoning with him but we all know that does not work! He has also decided that he needs for some weird reason ( I know, not his fault!) that he needs a row of folded up loo paper all along the top of the toilet cistern - completely does my head in. The towels are his and his alone - I take mine into the bathroom every time I go there - quite normal for lots of households - but he won't let me wash his and they smell- I sneak them out when I can. We only have the one bathroom, sadly.
On a different topic, he does not like the light on the dishwasher being on. Our dishwasher pauses part way through the cycle, and he switches the light off, which means he switches the machine off, and then the dishes don't finish being washed/dried. The dishwasher is my one luxury !!
All sounds very petty as I read it, but put it all together along with all the other things, and one needs a rant now and again. Yes, I struggle, I feel I want to go and live up north where I come from, I feel his children should be doing more, I feel very isolated.
Our Direct Payments have run out. I phoned them 5 weeks ago, and they said they wouldn't do anything till the money had run out. In all fairness, they did ring back and do a telephone interview, but then said they would have to get someone to come out and see us to do another Care Plan - I phoned last week and they said they had not got any further with it, and it has not been allocated to anyone.....
My dear OH is happy with that as he hates going for respite anyway!!
Oh well, the springs bulbs are doing their best to flower, so all is not lost
Why all those things do sound petty and trivial, it's the build up day after day and constantly having to trail along behind cleaning up the messes big and small that someone else makes that gets to you. At the moment my husband sings all the time and always the same song - if I ever hear 'Are you lonesome tonight?' one more time I think I will scream. It might not be so bad if he could sing but he can't. I have managed to divert him by asking him to sing something else but he doesn't seem to be able to think of any so he hasn't sung for a whole two days.
And on Friday night the only reason I didn't walk out was because my granddaughter was there and I didn't want to put her in the middle of anything unpleasant.
The only reason I stay is economic. If we split up we would both be poor and unhappy and by staying together , we are still unhappy but comfortable. I am not without a conscience and I know he would not survive on his own so they are the choices I have made. It's no fun being poor but being old and poor is a whole lotworse.
I am not compassionate enough to say it's the dementia and move on. Living with paranoia for seven years is enough to destroy anyone. No advice but lots of sympathy. I know where you are coming from.
Oh yes @karaokePete that’s exactly how I’m feeling today. We’ve come on holiday to visit our grown son. It’s been wonderful. But so exhausting for me. OH with FTD just expects help from me with one thing after another. There’s only a token word of thanks if that. Then within minutes, or hours - because obviously we’re away from home, and routine - it’s on to the next request for assistance.
So I’m responding as well as I can for the sake of our son. I want him to enjoy his fathers company and not be too worried. And I’ve succeeded, because son keeps commenting how well his father is doing. And paradoxically that makes me want to scream, That’s because of ME!!! And meanwhile I’m so much more tired than at home - but everyone else is happier including my OH!
I am getting tougher though - and fast. This morning I went for a decent walk. On my own, leaving OH at the hotel. He was angry but ... Oh! The joy of a fast invigorating walk, with no holdups, no worries about him stepping off kerbs, and above all no endlessly repeated questions!
I don’t much like the abrupt person I’m becoming. I don’t like laying down the law instead of consulting each other on every decision. I don’t like not inviting him on a walk. But I guess something has to give somewhere, or I’ll burst from the tensions that come from every direction. And if it’s my image of myself as a non-dictatorial type that has to be relinquished, then too bad.
De
My OH with FTD could not understand the new lights we put on two years ago. These were my very first mod con in thirty years. The idea was that if anyone came to the front door at night, or approached the house that way, the security light would switch on. Well! Even though he was not that demented back then, he COULD NOT understand why the light switch had to be left on for this to work, so every night he would turn it off after I’d gone to bed, and every morning deny he’d done it. Eventually the sensor lights stopped working with this treatment. I spent two years teaching him over and over until I gave up. Now we not only don’t have a functioning sensor light, we have no front door light at all for the night time if someone comes. And yes, this is a tiny thing; and yes, most people on TP are suffering far, far worse, including you. But that’s my petty problem - or one of them - and your dishwasher really struck a chord. Good luck and I’m thinking of you.
Dear @maryjoan NOTHING of what you recount here, that’s your daily routine of one trial after another, sounds the least bit petty. It all sounds absolutely appalling and I don’t know how you are keeping going. The dishwasher!I understand, karaokePete, and Margherita and NaeSporran, and you as well DennyD, and thank you - I am so glad I can come on here and have a moan.
I have only known my other half for seven and a half years and he was lovely when I first met him, but I reckon this dementia has been taking him away from me for about 4 years now, at least.
Add to the mix this flaming awful ileostomy he has had since last year and that he cannot deal with.....
I think one of the things that really gets to me is that keeping the home clean and tidy is so difficult with him. He has increasingly silly ( to me but not to him) habits. At 6 foot 2 inches, he has now decided that it is easier to pee in the bathroom wash basin than down the toilet - I have tried reasoning with him but we all know that does not work! He has also decided that he needs for some weird reason ( I know, not his fault!) that he needs a row of folded up loo paper all along the top of the toilet cistern - completely does my head in. The towels are his and his alone - I take mine into the bathroom every time I go there - quite normal for lots of households - but he won't let me wash his and they smell- I sneak them out when I can. We only have the one bathroom, sadly.
On a different topic, he does not like the light on the dishwasher being on. Our dishwasher pauses part way through the cycle, and he switches the light off, which means he switches the machine off, and then the dishes don't finish being washed/dried. The dishwasher is my one luxury !!
All sounds very petty as I read it, but put it all together along with all the other things, and one needs a rant now and again. Yes, I struggle, I feel I want to go and live up north where I come from, I feel his children should be doing more, I feel very isolated.
Our Direct Payments have run out. I phoned them 5 weeks ago, and they said they wouldn't do anything till the money had run out. In all fairness, they did ring back and do a telephone interview, but then said they would have to get someone to come out and see us to do another Care Plan - I phoned last week and they said they had not got any further with it, and it has not been allocated to anyone.....
My dear OH is happy with that as he hates going for respite anyway!!
Oh well, the springs bulbs are doing their best to flower, so all is not lost
My OH with FTD could not understand the new lights we put on two years ago. These were my very first mod con in thirty years. The idea was that if anyone came to the front door at night, or approached the house that way, the security light would switch on. Well! Even though he was not that demented back then, he COULD NOT understand why the light switch had to be left on for this to work, so every night he would turn it off after I’d gone to bed, and every morning deny he’d done it. Eventually the sensor lights stopped working with this treatment. I spent two years teaching him over and over until I gave up. Now we not only don’t have a functioning sensor light, we have no front door light at all for the night time if someone comes. And yes, this is a tiny thing; and yes, most people on TP are suffering far, far worse, including you. But that’s my petty problem - or one of them - and your dishwasher really struck a chord. Good luck and I’m thinking of you.
I am sorry for you, @Lawson58 , but I am pleased I am not the only person who is staying for economic reasons.
My situation is a little different, but I can seldom be compassionate. I try to be honest . I do not want to have economic advantage without paying OH back with my help and support.
OH is still independent and physically healthy, but his memory and, above all, reasoning abilities are poor. Maybe I will become compassionate when I see him ill and defenceless. At the moment I can only see a selfish, mean, verbally aggressive person .
I thought paranoia was bad enough but I don't have to tolerate verbal aggression. That must be really awful for you. My husband is very determined though and if he makes up his mind he is going tondo something, I usually just have to get tough and dig my toes in even deeper. We all know logic and reasoning doesn't work and with him coaxing doesn't either.
My husband is mostly quite happy (so long as I don't mess with his bridge afternoons) but he cannot understand the impact his illnesses have had on me.
I know that this is the inescapable part of being a carer for a PWD and with no idea of how long this is for. I often wonder if it is worse when you do love the person you care for.
I think I am lucky to have a good husband and one I know still loves me - I get pretty tired of the management, the cleaning, the caring, taking care of bills and forms, food and everything etc
And there is fear of the future - best not to look ahead too far - for now we have support from family and friends - and the best knowledge I have about the problems comes from this site .
And there is fear of the future - best not to look ahead too far - for now we have support from family and friends - and the best knowledge I have about the problems comes from this site .
I'm not even living with my mum, but can't even let the "walking away" idea become a thought. She has been in my head every day since this started eight years ago. I just can't withdraw because I would feel worse than I feel now. I'm trying to keep her as contented as possible until I can no longer keep her safe in her own home, then I will, sadly, put her in to a home.
This is how I feel about my dad .He's always on my mind. Sometimes I think about how nice it would be not to have to care for him but if I stop the rest of the family won't step up so I'll keep going until he's no longer safe to stay in his home.
Dementia is a test for relationships, as I read when I first joined TP.
Once I realized love was over (if it ever was love), I found new reasons why I should stay. At the moment I've found two: honesty and economic interest
Once I realized love was over (if it ever was love), I found new reasons why I should stay. At the moment I've found two: honesty and economic interest
@Bunpoots, good to see we are in the same place, it's so much easier when you find a fellow passenger on this ride!
My goodness, how much these posts resonate. Most of us love or did love the person we're caring for but hate the situation we are now in. If there is an answer it is not easy and usually expensive. Years tick by and we are getting older and missing out in what could have been happy and adventurous years of retirement. Instead - frustration, dwindling feelings, perhaps health issues for ourselves, some will have dwindling financial resources too along with worries about keeping a roof over your head.
This is a major demographic problem which can and will get worse and is not being faced up to. Scratching the surface will not solve the problem of the illness itself or the effects on the carers and families. All the TV programmes and newspaper articles in the world make not a jot of difference.
I don't see any signs of a "big discussion" to get to the roots of all of this. In the meantime PWD and their carers keep the whole sorry mess ticking over.
This is a major demographic problem which can and will get worse and is not being faced up to. Scratching the surface will not solve the problem of the illness itself or the effects on the carers and families. All the TV programmes and newspaper articles in the world make not a jot of difference.
I don't see any signs of a "big discussion" to get to the roots of all of this. In the meantime PWD and their carers keep the whole sorry mess ticking over.
