I need someone to talk to

TNJJ

Registered User
May 7, 2019
1,045
cornwall
Yes myself,with my dad.
I was with him 4 days a week and then dropped to 3.
Dad cannot follow me around as he cannot walk without a gutter frame.
He used to phone me to pick up stuff but no longer can(bonus).
He had carers in 4X a day but I used to have to run around and get shopping etc.
I always used to do personal care with dad too.But that stopped when he became uncooperative and would not use the wheeled commode rather than the toilet.
He had to be wheeled on a Sara Steady to the bathroom (which was like a small box room) .I got diagnosed with Osteoarthritis and he didn’t care.So I stopped and told him he had to wait for carers. At that point I decided no more.

I arranged respite for me and dad.He has been in the care home for 3weeks and loving it.He has Vascular Dementia.
 

Vitesse

Registered User
Oct 26, 2016
144
You're not alone. My husband just sits and gazes at me like a puppy. He follows me round the house and no longer reads or uses his computer (for the news etc), he just sits and wants to be in the same room as me. I still manage to work part-time, because it gets me away from him for a few hours 2-3 days a week. I don't know how much longer this will be possible - though I tell him where I'm going and leave a written note, he almost always calls me to ask where I am and frequently goes round my daughter's house asking where I am. He's reluctant to go out socially, though sometimes I make that happen, and when anyone comes round he doesn't say a word, it's as if he isn't there. I've tried to get him to accept a helper for when I'm out, to make sure he has breakfast/lunch, but he won't accept that. He only wants to do things with me, he even asks if he can come to work with me. I should be patient and caring like so many people on this forum seem to be, but I'm angry and frustrated and when it's time to go home I often go for a coffee to put off that walk through the door. I'm 67 and I still have lots of energy and things I want to do with my life but I can't because of this ball and chain - OK I've said it. We've been together since I was 17, and I loved my husband through thick and thin, but now he's no longer my husband and that love is wearing very thin. I don't know how other people manage to be so self-sacrificing. I'm having therapy for depression which is helping a bit, but I can't shake the depression off because the cause of it is sitting at home waiting to suck all the joy and vitality out of me the minute I walk through the door. Is there anyone else out there who feels like this? Everyone else seems to be so patient and kind.
You're not alone. My husband just sits and gazes at me like a puppy. He follows me round the house and no longer reads or uses his computer (for the news etc), he just sits and wants to be in the same room as me. I still manage to work part-time, because it gets me away from him for a few hours 2-3 days a week. I don't know how much longer this will be possible - though I tell him where I'm going and leave a written note, he almost always calls me to ask where I am and frequently goes round my daughter's house asking where I am. He's reluctant to go out socially, though sometimes I make that happen, and when anyone comes round he doesn't say a word, it's as if he isn't there. I've tried to get him to accept a helper for when I'm out, to make sure he has breakfast/lunch, but he won't accept that. He only wants to do things with me, he even asks if he can come to work with me. I should be patient and caring like so many people on this forum seem to be, but I'm angry and frustrated and when it's time to go home I often go for a coffee to put off that walk through the door. I'm 67 and I still have lots of energy and things I want to do with my life but I can't because of this ball and chain - OK I've said it. We've been together since I was 17, and I loved my husband through thick and thin, but now he's no longer my husband and that love is wearing very thin. I don't know how other people manage to be so self-sacrificing. I'm having therapy for depression which is helping a bit, but I can't shake the depression off because the cause of it is sitting at home waiting to suck all the joy and vitality out of me the minute I walk through the door. Is there anyone else out there who feels like this? Everyone else seems to be so patient and kind.
Believe me, it is not easy to be patient. I read all the booklets and they tell you how you must be patient and do this and that, and I think I must be horrible, because it all drives me up the wall. Please try to keep your part time job going, it will at least give you a few hours away. I used to be a magistrate which got me out one day per week, but it was awful when I got back, because he was at the stage of accusing me of having an affair, and not going to the court at all!! The stupid thoughts stay with them, so that sort of issue lasted all the time. In the end, I had to give up my voluntary work, for a quieter life. I was also getting concerned about leaving him alone in the house for too long.
Some people seem to be able to be tough with their partners, but although I lose it sometimes, I try to be kind because that’s what you do when you have been with someone for 40 years. I want his final years to be as comfortable and pleasant as I can make it. He would do the same for me, I’m certain. But at the same time, I am struggling to cope with the loneliness and homelessness of it all. When i do see my friends, I have no conversation except dementia, because I don’t do anything else!! Many times I wish I’d never set eyes on him in the first place!!
Chin up, try to remember the good times
 

Stayingalive

Registered User
Nov 24, 2019
22
Believe me, it is not easy to be patient. I read all the booklets and they tell you how you must be patient and do this and that, and I think I must be horrible, because it all drives me up the wall. Please try to keep your part time job going, it will at least give you a few hours away. I used to be a magistrate which got me out one day per week, but it was awful when I got back, because he was at the stage of accusing me of having an affair, and not going to the court at all!! The stupid thoughts stay with them, so that sort of issue lasted all the time. In the end, I had to give up my voluntary work, for a quieter life. I was also getting concerned about leaving him alone in the house for too long.
Some people seem to be able to be tough with their partners, but although I lose it sometimes, I try to be kind because that’s what you do when you have been with someone for 40 years. I want his final years to be as comfortable and pleasant as I can make it. He would do the same for me, I’m certain. But at the same time, I am struggling to cope with the loneliness and homelessness of it all. When i do see my friends, I have no conversation except dementia, because I don’t do anything else!! Many times I wish I’d never set eyes on him in the first place!!
Chin up, try to remember the good times
 

Stayingalive

Registered User
Nov 24, 2019
22
Thank you for those words. What happens at home becomes an obsession, and then when you meet people it's all you want to talk about, and it's the last thing they want to hear. This week we had a lovely evening out, but the next day my husband was tired out and very confused (lasted for 3 days) which puts me off taking him out at all. He was desperate to find me (he spends lots of time searching for something, but he can't find it because he never knows what he's looking for) so he kept on calling me when I was in the house with him, and eventually went round to my daughter's house looking for me. So upsetting when he doesn't know I'm me. I'm determined not to become a full-time carer. Just can't do that. Talk again sometime - nice to hear from someone else who isn't a saint.
 

Vitesse

Registered User
Oct 26, 2016
144
You're not alone. My husband just sits and gazes at me like a puppy. He follows me round the house and no longer reads or uses his computer (for the news etc), he just sits and wants to be in the same room as me. I still manage to work part-time, because it gets me away from him for a few hours 2-3 days a week. I don't know how much longer this will be possible - though I tell him where I'm going and leave a written note, he almost always calls me to ask where I am and frequently goes round my daughter's house asking where I am. He's reluctant to go out socially, though sometimes I make that happen, and when anyone comes round he doesn't say a word, it's as if he isn't there. I've tried to get him to accept a helper for when I'm out, to make sure he has breakfast/lunch, but he won't accept that. He only wants to do things with me, he even asks if he can come to work with me. I should be patient and caring like so many people on this forum seem to be, but I'm angry and frustrated and when it's time to go home I often go for a coffee to put off that walk through the door. I'm 67 and I still have lots of energy and things I want to do with my life but I can't because of this ball and chain - OK I've said it. We've been together since I was 17, and I loved my husband through thick and thin, but now he's no longer my husband and that love is wearing very thin. I don't know how other people manage to be so self-sacrificing. I'm having therapy for depression which is helping a bit, but I can't shake the depression off because the cause of it is sitting at home waiting to suck all the joy and vitality out of me the minute I walk through the door. Is there anyone else out there who feels like this? Everyone else seems to be so patient and kind.
Yes myself,with my dad.
I was with him 4 days a week and then dropped to 3.
Dad cannot follow me around as he cannot walk without a gutter frame.
He used to phone me to pick up stuff but no longer can(bonus).
He had carers in 4X a day but I used to have to run around and get shopping etc.
I always used to do personal care with dad too.But that stopped when he became uncooperative and would not use the wheeled commode rather than the toilet.
He had to be wheeled on a Sara Steady to the bathroom (which was like a small box room) .I got diagnosed with Osteoarthritis and he didn’t care.So I stopped and told him he had to wait for carers. At that point I decided no more.

I arranged respite for me and dad.He has been in the care home for 3weeks and loving it.He has Vascular Dementia.
Thank you for those words. What happens at home becomes an obsession, and then when you meet people it's all you want to talk about, and it's the last thing they want to hear. This week we had a lovely evening out, but the next day my husband was tired out and very confused (lasted for 3 days) which puts me off taking him out at all. He was desperate to find me (he spends lots of time searching for something, but he can't find it because he never knows what he's looking for) so he kept on calling me when I was in the house with him, and eventually went round to my daughter's house looking for me. So upsetting when he doesn't know I'm me. I'm determined not to become a full-time carer. Just can't do that. Talk again sometime - nice to hear from someone else who isn't a saint.
I’m certainly not a saint, but I try not to be too harsh either. Don’t achieve the latter all the time. I mentioned earlier, my husband says his wife has gone, disappeared one night without a word, and I find myself in her place. We have recent photos but he says these are of his wife, and doesn’t see that I am the person in the photo. It’s weird, but I just go along with it.
 

jenniferjean

Registered User
Apr 2, 2016
660
Basingstoke, Hampshire
I can tell my husband I’m going, and he either fails to understand what I’m saying, or if he seems contrite at the time, he will have forgotten by later the same day that this conversation ever took place.
This is how my husband is, total lack of empathy.
I know he would be trying to look after me if our roles were reversed.
This is how I feel too.
 

Buteo

Registered User
Mar 20, 2019
44
You don't have to feel that you have to carry your burden alone. Many professional carers will be used to difficult behaviour and see it as part of their job to "suck it up." You do not have to feel that because your partner is difficult you are the only one who should deal with it - it is your life too and it is essential that you get respite - otherwise the social worker who wants to "close the book" on you will end up with two people who need care!
 

Vitesse

Registered User
Oct 26, 2016
144
You don't have to feel that you have to carry your burden alone. Many professional carers will be used to difficult behaviour and see it as part of their job to "suck it up." You do not have to feel that because your partner is difficult you are the only one who should deal with it - it is your life too and it is essential that you get respite - otherwise the social worker who wants to "close the book" on you will end up with two people who need care!
I know you’re absolutely right, but I can’t get my husband to let anybody come to be with him. I’m going to try to get someone in without telling him, but I really don’t want a scene involving strangers. It will upset me more than him
 

Buteo

Registered User
Mar 20, 2019
44
I know you’re absolutely right, but I can’t get my husband to let anybody come to be with him. I’m going to try to get someone in without telling him, but I really don’t want a scene involving strangers. It will upset me more than him
You are in a bind. There are good people out there who will have ideas - try things - try to persevere and not let an outburst put you off, things may improve - and you need something different to happen!
 

annielou

Registered User
Sep 27, 2019
483
Yorkshire
I'm no saint either, in fact yesterday I think I behaved very badly.
I was really pigged off with mum and told her so. I can blame being shattered, stressed, emotionally exhausted, physically exhausted, pmt, perimenopausal or just that I am a grumpy bad tempered bug@@@
The day was going ok we'd not had too bad a night, think I'd had about 5 hrs sleep mostly in one go which is a VERY good night, the morning had gone ok, the weekly trip to supermarket had been stressful as usual and I was quite peeved after that but then we went back at my house for lunch and we were all reading magazines with a little bit of chatting and mum managed two hours which lately is a miracle.
But then she gave up and after a few minutes said one of her most used phrases that drive me mad and often push me over the edge 'are you not talking to me?'
We had five minutes of variations of this from mum and me saying, we've been talking but we were reading magazines so not talking much and I'll just finish this, before I gave in and put the paper down. Then mum said again I hadn't been talking to her so was i mad at her?
Well nasty impatient Andrea came out. I told her nobody had been talking much including her because we were all reading, I wasn't ignoring her and she hadn't spoken to me much in last couple of hours either but I didn't think she was mad at me just that she was doing something else,
This is a regular thing with mum whenever she is bored she looks to me to fix it and even if only been quiet for five minutes she ask why I'm not talking to her, or some variation of that.
Well yesterday I was peeved and when she carried on about me doing stuff and ignoring her. I snapped and said 'oh mum don't start with the woe is me again I'm not in the mood.' Not nice I know. Mum came back with what do you mean? what have I done? why do you not like me? I told her all the usual things I say about not being mad, we were all quiet, I was just reading, it had only been a few minutes since she stopped reading, its not fair to expect me to give her all my attention all the time.
I was quite snappy which upset her, then me and we calmed down a bit, but then it lead to a discussion about mums behaviour and what she expects of me and how she feels, how I feel, which for a while was quite calm but as mum doesn't follow conversations well or retain what we say it goes on in a loop which I find frustrating. We had almost 3 hours of this, alternating between calm discussion, repeating the same things, being upset and getting angry. At times I was really quite nasty when mum disagreed with what I said she did or said things that were untrue and I was so annoyed and angry I could not keep calm for the last half hour of it so mum decided she wanted to go home alone. She didn't want me to go with her as I had no compassion and was horrible.
I was tempted to take her home and leave but I also felt horrible for being nasty and I know she wouldn't have managed so I said I was going with her. Cue another half hour of us arguing in the kitchen in our coats about if i was staying or not. I even used the F word!!! now I'm not much of a swearer, blo@@@ and sh@@ and bug@@@ at times but I don't use the F word but it does occassionally pop out at times when I loose it. Probably not said it a dozen times in my 47 years even half a dozen so we were all shocked.
Eventually we got to mums and came in and she said I wasn't staying I said I was. When I was seeing hubby off home she came to front door telling me to go and if I didn't go she would throw me out and came behind me to push me out the door. I stepped away a bit pushing door so It was near me and mum couldn't get to it. She said again your not staying here in my house al throw you out .
I'm not proud of myself for saying this but I said. Touch me and I'll phone police and have you sectioned. I could have kicked myself for saying it I don't where it came from. Its not even like they would, and it was my fault we were arguing so I probably was one who police would blame.
Anyway mum walked off in to room, hubby went home and there we were mum and I stuck together not speaking. Mum put her nightie on and I sat there feeling sick and shocked. About another hour passed before we were talking properly. She said she shouldn't have said she didnt renember it all or know exactly what she had said but knows she shouldn't have and I said I shouldn't have said what I did either and I shouldn't have been nasty and I was sorry.
By bedtime we were ok and mums normal bedtime in and out of bed checking plugs and doors routine passed without me getting nasty and eventually mum stayed in bed around midnight.
This morning she had forgotten it until we were chatting about going out today with hubby and she sort of remembered we argued but wasnt mad at me about it.
I feel guilty and cant believe I swore or threatened her with police etc
 

TeresaP

New member
Nov 23, 2019
3
My husband was diagnosed with AD in 2017 although he had the symptoms for some time before. I have no family close by and am his sole carer. He struggles to communicate and I mostly fail to understand what he is saying. I am 20 years younger than my husband. I have managed up to now, but in the last few months the social worker has been trying to find options to give me some respite. My problem is that my husband flatly refuses to have anyone else to sit with him or take him out. We have tried a PA, a Day Centre, and he will not cooperate. This week I have had a volunteer from the RAFA offering to come to spend some time with him, and again he refuses to have him come. I am at the end of my tether, as I can’t have any time to my self, nor even someone to chat to other than phone calls. I don’t know how much longer I can face this. Does anyone have any experience of a similar situation please?
my situation is different in that mum has alzheimers but she was the same at the beginning and I twice over a period of time tried carers in the house, it was more of a hindrance than a help as it would cause mum distress lots of different people coming in. as her condition progressed she started going to daycare twice a week to give me a break, she still is resistant when im getting her ready but once shes there she seems to enjoy it. I have a visit at home from a carer from crossroads, cannot recommend them enough if you can get someone, there is a long waiting list. the benefit of them is the same person comes at the same time each week so is more settling to the person needing care. even with this help I still feel 'trapped' sometimes for the rest of the time. I can only sympathise with you and hope that in time you can get the opportunity for some time to yourself, it all takes time.
 

TNJJ

Registered User
May 7, 2019
1,045
cornwall
I'm no saint either, in fact yesterday I think I behaved very badly.
I was really pigged off with mum and told her so. I can blame being shattered, stressed, emotionally exhausted, physically exhausted, pmt, perimenopausal or just that I am a grumpy bad tempered bug@@@
The day was going ok we'd not had too bad a night, think I'd had about 5 hrs sleep mostly in one go which is a VERY good night, the morning had gone ok, the weekly trip to supermarket had been stressful as usual and I was quite peeved after that but then we went back at my house for lunch and we were all reading magazines with a little bit of chatting and mum managed two hours which lately is a miracle.
But then she gave up and after a few minutes said one of her most used phrases that drive me mad and often push me over the edge 'are you not talking to me?'
We had five minutes of variations of this from mum and me saying, we've been talking but we were reading magazines so not talking much and I'll just finish this, before I gave in and put the paper down. Then mum said again I hadn't been talking to her so was i mad at her?
Well nasty impatient Andrea came out. I told her nobody had been talking much including her because we were all reading, I wasn't ignoring her and she hadn't spoken to me much in last couple of hours either but I didn't think she was mad at me just that she was doing something else,
This is a regular thing with mum whenever she is bored she looks to me to fix it and even if only been quiet for five minutes she ask why I'm not talking to her, or some variation of that.
Well yesterday I was peeved and when she carried on about me doing stuff and ignoring her. I snapped and said 'oh mum don't start with the woe is me again I'm not in the mood.' Not nice I know. Mum came back with what do you mean? what have I done? why do you not like me? I told her all the usual things I say about not being mad, we were all quiet, I was just reading, it had only been a few minutes since she stopped reading, its not fair to expect me to give her all my attention all the time.
I was quite snappy which upset her, then me and we calmed down a bit, but then it lead to a discussion about mums behaviour and what she expects of me and how she feels, how I feel, which for a while was quite calm but as mum doesn't follow conversations well or retain what we say it goes on in a loop which I find frustrating. We had almost 3 hours of this, alternating between calm discussion, repeating the same things, being upset and getting angry. At times I was really quite nasty when mum disagreed with what I said she did or said things that were untrue and I was so annoyed and angry I could not keep calm for the last half hour of it so mum decided she wanted to go home alone. She didn't want me to go with her as I had no compassion and was horrible.
I was tempted to take her home and leave but I also felt horrible for being nasty and I know she wouldn't have managed so I said I was going with her. Cue another half hour of us arguing in the kitchen in our coats about if i was staying or not. I even used the F word!!! now I'm not much of a swearer, blo@@@ and sh@@ and bug@@@ at times but I don't use the F word but it does occassionally pop out at times when I loose it. Probably not said it a dozen times in my 47 years even half a dozen so we were all shocked.
Eventually we got to mums and came in and she said I wasn't staying I said I was. When I was seeing hubby off home she came to front door telling me to go and if I didn't go she would throw me out and came behind me to push me out the door. I stepped away a bit pushing door so It was near me and mum couldn't get to it. She said again your not staying here in my house al throw you out .
I'm not proud of myself for saying this but I said. Touch me and I'll phone police and have you sectioned. I could have kicked myself for saying it I don't where it came from. Its not even like they would, and it was my fault we were arguing so I probably was one who police would blame.
Anyway mum walked off in to room, hubby went home and there we were mum and I stuck together not speaking. Mum put her nightie on and I sat there feeling sick and shocked. About another hour passed before we were talking properly. She said she shouldn't have said she didnt renember it all or know exactly what she had said but knows she shouldn't have and I said I shouldn't have said what I did either and I shouldn't have been nasty and I was sorry.
By bedtime we were ok and mums normal bedtime in and out of bed checking plugs and doors routine passed without me getting nasty and eventually mum stayed in bed around midnight.
This morning she had forgotten it until we were chatting about going out today with hubby and she sort of remembered we argued but wasnt mad at me about it.
I feel guilty and cant believe I swore or threatened her with police etc
You’re at the end of your tether so I’m not surprised.
You need some time out,seriously before things escalate.

Either carers or respite because you do need a break.
No matter how much we try to hold on to the PWD we cannot.
I have learnt to accept my dad as he is....now.Not what he was.
Some aspects of his personality is still there and is exaggerated.Others have gone with new ones in place...

Stop feeling guilty because it is natural but there has to be some changes...For both your sakes...
 

annielou

Registered User
Sep 27, 2019
483
Yorkshire
my situation is different in that mum has alzheimers but she was the same at the beginning and I twice over a period of time tried carers in the house, it was more of a hindrance than a help as it would cause mum distress lots of different people coming in. as her condition progressed she started going to daycare twice a week to give me a break, she still is resistant when im getting her ready but once shes there she seems to enjoy it. I have a visit at home from a carer from crossroads, cannot recommend them enough if you can get someone, there is a long waiting list. the benefit of them is the same person comes at the same time each week so is more settling to the person needing care. even with this help I still feel 'trapped' sometimes for the rest of the time. I can only sympathise with you and hope that in time you can get the opportunity for some time to yourself, it all takes time.
Hi hope you don't mind me asking but I saw you mentioned crossroads and wondered if you paid and how much they charge? We were given a leaflet and I looked online but couldn't find a fee list.
Hope you don't mind me asking and feel free to not say if you'd prefer not to. X
 

annielou

Registered User
Sep 27, 2019
483
Yorkshire
You’re at the end of your tether so I’m not surprised.
You need some time out,seriously before things escalate.

Either carers or respite because you do need a break.
No matter how much we try to hold on to the PWD we cannot.
I have learnt to accept my dad as he is....now.Not what he was.
Some aspects of his personality is still there and is exaggerated.Others have gone with new ones in place...

Stop feeling guilty because it is natural but there has to be some changes...For both your sakes...
Thank you @TNJJ x
I think I need a personality change or a brain swap, lobotomy maybe, to change my way of thinking and deal with/accept things. I know mum can't change so I need to, but so far knowing and doing are worlds apart and I can't manage it. I hope one day I can for mine and mums sake. X
 

TNJJ

Registered User
May 7, 2019
1,045
cornwall
Thank you @TNJJ x
I think I need a personality change or a brain swap, lobotomy maybe, to change my way of thinking and deal with/accept things. I know mum can't change so I need to, but so far knowing and doing are worlds apart and I can't manage it. I hope one day I can for mine and mums sake. X
I hope so too. I know it is easier said than done.I have been there myself with dad.But I had to “step out of the box” so to speak.To observe rather than react.
I used to work with dementia so I had a good idea.But I still kept dad home longer than I should have..
 

Vitesse

Registered User
Oct 26, 2016
144
I hope so too. I know it is easier said than done.I have been there myself with dad.But I had to “step out of the box” so to speak.To observe rather than react.
I used to work with dementia so I had a good idea.But I still kept dad home longer than I should have..
I don’t see I could ever be detached from this situation and look at it objectively. It’s a marvellous thing to be able to do and saves ones sanity, but I genuinely feel I owe it to my husband to look after him. We’ve had many lovely years together and he is now ill
 

Vitesse

Registered User
Oct 26, 2016
144
You are in a bind. There are good people out there who will have ideas - try things - try to persevere and not let an outburst put you off, things may improve - and you need something different to happen!
It’s not an outburst as much as a slow drip of bad feeling!!
 

TeresaP

New member
Nov 23, 2019
3
Hi hope you don't mind me asking but I saw you mentioned crossroads and wondered if you paid and how much they charge? We were given a leaflet and I looked online but couldn't find a fee list.
Hope you don't mind me asking and feel free to not say if you'd prefer not to. X
crossroads are a charitable organisation and you do not pay for the visits hense why the waiting list is so long but they are wonderful
 

Philbo

Registered User
Feb 28, 2017
752
Kent
crossroads are a charitable organisation and you do not pay for the visits hense why the waiting list is so long but they are wonderful
I can also vouch for Crossroads as they provided a respite visitor to sit with my wife one afternoon a week, for the last 3 or so years (sadly she has recently gone into a nursing home). I think it took about 9 months on the waiting list, following an assessment visit from their area coordinator. He was fantastic and came armed with mountains of leaflets detailing what services/support were available locally.
 

annielou

Registered User
Sep 27, 2019
483
Yorkshire
I hope so too. I know it is easier said than done.I have been there myself with dad.But I had to “step out of the box” so to speak.To observe rather than react.
I used to work with dementia so I had a good idea.But I still kept dad home longer than I should have..
Thank you x