I need someone to talk to

[Fishgirl]

My husband just flatly refuses to come to most activities or to have a PA or volunteer come here. Fortunately the social worker is accepting and understanding this, but they can’t suggest anything else, so I am left to carry the burden. The social worker Is even talking about closing the book on us, and leave it to me to phone again if I need them. I have told him I’m desperate, I’m not to blame for my husbands intransigence, so I need support.

It’s terrible isn’t it, my OH went through a phase like this soon after he was diagnosed, but then it passed and he became very childlike although he still didn’t want me to go out. I don’t know what’s happened now but the aggression is back. It sounds like there’s no easy answer, but it’s very hard to live with! x

 

[Vitesse]

It’s terrible isn’t it, my OH went through a phase like this soon after he was diagnosed, but then it passed and he became very childlike although he still didn’t want me to go out. I don’t know what’s happened now but the aggression is back. It sounds like there’s no easy answer, but it’s very hard to live with! x

You can say that again. Yesterday was a horrible day, with him agitating all morning and getting annoyed. In the end, I had to ring the mental health doctor and she sanctioned me going back to giving him mirtazapine. This morning he is very quiet, but I have no idea how long that will last. I’m still not supposed to talk to anyone!!! Medication seems as though it works for a short time and then we revert to the same old issues.

 

[annielou]

I hope you find some way of getting a break soon, its like waiting for a miracle though isn't it.
I've been staying with mum almost 6 weeks now, before that a few weeks of visiting every day for about 7/8 hours a day with a dozen phone calls too and before that visiting a few days a week with dozens of calls a day. I don't know how much longer I can carry on and its not been that long compared to a lot of people. But I feel like my life has been taken over. She doesnt want strangers in her house so wouldn't accept carers SW mentioned although they were only 3 short visits a day to help get dressed check eaten and taken tablets. She told SW didn't need them as nothing wrong she could cope and had me! She won't have any private ones for same reasons, plus doesnt want to pay for them. We were given 4 weeks respite a year but mum doesnt like idea, she alternates between doesnt want to go in home and if she goes in whats point if has to come out again. I suggested befrienders so someone could sit with her for chat while I go home or out for a bit and she didn't have to pay but still didn't like that idea and I couldn't find any round here anyway.
I'm currently trying the idea of ageuk day care which she has been saying will do but keeps putting off and backtracking. I rang yesterday to arrange visit to look round but manager is away till Tuesday so they will ask her to ring me back then and I'm hoping mum goes and agrees to go but I have a feeling she will not want to.
Mum wants my attention every minute, she can't entertain herself now so just sits there hoping I'll do it. When I'm quiet she'll get grumpy and say why aren't you talking to me. She follows me round when I'm doing things. Hubby comes to mums or some days mum and me go to my house for few hours and I see hubby then but we can't chat without her and barely get a few minutes alone in a room without her following us. When I'm on the phone she moans and often shouts that I'm ignoring her so I text rather than call if possible. I have the volume on my mobile at its lowest so I can text without her noticing as much as she moans about me being on it. I cant look at a magazine unless she is which is not for long now as she cant concentrate. The past week I have managed to knit a few times without her complaining which feels huge. I can't go out and leave her alone, I did a couple of times first week I was here though was less than an hour but the next time I tried she got really worried and upset and since then although occasionaly says she'll be ok when it comes to it shes scared and confused for me to leave her so I don't even try now. The only break I get is when she's in the shower, loo or asleep. When I'm in the loo or shower she often interupts me to ask things or moans I'm too long and wakes me up in the night too. I can't go to bed until she does, she wakes up during night and early in a morning and though she often nods off during the day and evening if my eyes ever droop she'll say VERY loudly, 'you're not going to sleep are you, well thats brilliant what am I supposed to do' or something similar.
My sister has been to stay with mum a couple of days twice during last few weeks and she's fine with sis but still wants to come see me too and keeps asking when she is seeing me. So although I saw her and mum in the day I did manage 4 nights sleeping at home in the last month, though most of it was spent looking on internet for things to do with dementia and doing housework but I did get a bit of a break which is more than some people have.
I know mum cant help being so self focussed but I feel like my life has been sacrificed for hers, much as I love and want to help and look after her it feels too much. And at the same time I keep doing it because I love her and just keep hoping for a miracle solution person who will come along to look after her which she'll accept so I can have a rest knowing shes safe and happy. Which I'm sure is how many people feel.
I hope you get your 'miracle' soon and find something your OH accepts to give you a break X
P.s sorry my long ramble I do go on

 

[Fishgirl]

I hope you find some way of getting a break soon, its like waiting for a miracle though isn't it.
I've been staying with mum almost 6 weeks now, before that a few weeks of visiting every day for about 7/8 hours a day with a dozen phone calls too and before that visiting a few days a week with dozens of calls a day. I don't know how much longer I can carry on and its not been that long compared to a lot of people. But I feel like my life has been taken over. She doesnt want strangers in her house so wouldn't accept carers SW mentioned although they were only 3 short visits a day to help get dressed check eaten and taken tablets. She told SW didn't need them as nothing wrong she could cope and had me! She won't have any private ones for same reasons, plus doesnt want to pay for them. We were given 4 weeks respite a year but mum doesnt like idea, she alternates between doesnt want to go in home and if she goes in whats point if has to come out again. I suggested befrienders so someone could sit with her for chat while I go home or out for a bit and she didn't have to pay but still didn't like that idea and I couldn't find any round here anyway.
I'm currently trying the idea of ageuk day care which she has been saying will do but keeps putting off and backtracking. I rang yesterday to arrange visit to look round but manager is away till Tuesday so they will ask her to ring me back then and I'm hoping mum goes and agrees to go but I have a feeling she will not want to.
Mum wants my attention every minute, she can't entertain herself now so just sits there hoping I'll do it. When I'm quiet she'll get grumpy and say why aren't you talking to me. She follows me round when I'm doing things. Hubby comes to mums or some days mum and me go to my house for few hours and I see hubby then but we can't chat without her and barely get a few minutes alone in a room without her following us. When I'm on the phone she moans and often shouts that I'm ignoring her so I text rather than call if possible. I have the volume on my mobile at its lowest so I can text without her noticing as much as she moans about me being on it. I cant look at a magazine unless she is which is not for long now as she cant concentrate. The past week I have managed to knit a few times without her complaining which feels huge. I can't go out and leave her alone, I did a couple of times first week I was here though was less than an hour but the next time I tried she got really worried and upset and since then although occasionaly says she'll be ok when it comes to it shes scared and confused for me to leave her so I don't even try now. The only break I get is when she's in the shower, loo or asleep. When I'm in the loo or shower she often interupts me to ask things or moans I'm too long and wakes me up in the night too. I can't go to bed until she does, she wakes up during night and early in a morning and though she often nods off during the day and evening if my eyes ever droop she'll say VERY loudly, 'you're not going to sleep are you, well thats brilliant what am I supposed to do' or something similar.
My sister has been to stay with mum a couple of days twice during last few weeks and she's fine with sis but still wants to come see me too and keeps asking when she is seeing me. So although I saw her and mum in the day I did manage 4 nights sleeping at home in the last month, though most of it was spent looking on internet for things to do with dementia and doing housework but I did get a bit of a break which is more than some people have.
I know mum cant help being so self focussed but I feel like my life has been sacrificed for hers, much as I love and want to help and look after her it feels too much. And at the same time I keep doing it because I love her and just keep hoping for a miracle solution person who will come along to look after her which she'll accept so I can have a rest knowing shes safe and happy. Which I'm sure is how many people feel.
I hope you get your 'miracle' soon and find something your OH accepts to give you a break X
P.s sorry my long ramble I do go on

You ramble as much as you want, everyone on here knows the need to have a good ramble! It keeps us sane Everything you’ve said is exactly the same here, but I can see how much more difficult it must be for you. Your marriage is still in tact (no hope left for ours!) and it must be putting a terrible strain on it, your husband must be a saint to put with it so well. xx

 

[annielou]

You ramble as much as you want, everyone on here knows the need to have a good ramble! It keeps us sane Everything you’ve said is exactly the same here, but I can see how much more difficult it must be for you. Your marriage is still in tact (no hope left for ours!) and it must be putting a terrible strain on it, your husband must be a saint to put with it so well. xx

Thank you x I sometimes wonder how long hubby will put up with it. We've never really spent much time apart and I know like me he hates living in seperate houses and also gets upset about how mum sometimes treats me and makes me feel, but so far he is being pleasant to mum and putting up with things as they are.
I think everybodys situation is difficult just with some different circumstances.
Its sort of comforting to read the similarities even though Its the problems and struggles that are similar but its also depressing to think of so many others struggling so much. X

 

[Splashing About]

It’s very depressing at times

When I think back to all the phases we have endured and the lack of understanding from social workers, GPs, etc I get really angry. It’s only since posting on here that I’ve realised just how common our experience is.

 

[Vitesse]

It’s very depressing at times

When I think back to all the phases we have endured and the lack of understanding from social workers, GPs, etc I get really angry. It’s only since posting on here that I’ve realised just how common our experience is.

Firstly, I’d like to thank you all for all the comments. It has helped to know that I’m not alone in my experience. This week has been pretty bad, and I’ve not been coping very well. I’m not sure why I’ve reacted this badly because life has been like this for nearly 2 years now, so I should be used to it. To be fair, the SW seems to understand the situation, and makes the right noises, but as my husband won’t cooperate they run out of options. The dementia support services say they are there, but it’s an occasional phone call and then I’m left with this mess for 24 hours per day. They all trot out the question of Respite care, but I know he wouldn’t go, there would be a big fuss, and what happens when he comes back? I’m back to square one. That’s without the question of the cost of it which we would have to pay. so I just have to grin and bear it, I suppose.

 

[maryjoan]

I hope you find some way of getting a break soon, its like waiting for a miracle though isn't it.
I've been staying with mum almost 6 weeks now, before that a few weeks of visiting every day for about 7/8 hours a day with a dozen phone calls too and before that visiting a few days a week with dozens of calls a day. I don't know how much longer I can carry on and its not been that long compared to a lot of people. But I feel like my life has been taken over. She doesnt want strangers in her house so wouldn't accept carers SW mentioned although they were only 3 short visits a day to help get dressed check eaten and taken tablets. She told SW didn't need them as nothing wrong she could cope and had me! She won't have any private ones for same reasons, plus doesnt want to pay for them. We were given 4 weeks respite a year but mum doesnt like idea, she alternates between doesnt want to go in home and if she goes in whats point if has to come out again. I suggested befrienders so someone could sit with her for chat while I go home or out for a bit and she didn't have to pay but still didn't like that idea and I couldn't find any round here anyway.
I'm currently trying the idea of ageuk day care which she has been saying will do but keeps putting off and backtracking. I rang yesterday to arrange visit to look round but manager is away till Tuesday so they will ask her to ring me back then and I'm hoping mum goes and agrees to go but I have a feeling she will not want to.
Mum wants my attention every minute, she can't entertain herself now so just sits there hoping I'll do it. When I'm quiet she'll get grumpy and say why aren't you talking to me. She follows me round when I'm doing things. Hubby comes to mums or some days mum and me go to my house for few hours and I see hubby then but we can't chat without her and barely get a few minutes alone in a room without her following us. When I'm on the phone she moans and often shouts that I'm ignoring her so I text rather than call if possible. I have the volume on my mobile at its lowest so I can text without her noticing as much as she moans about me being on it. I cant look at a magazine unless she is which is not for long now as she cant concentrate. The past week I have managed to knit a few times without her complaining which feels huge. I can't go out and leave her alone, I did a couple of times first week I was here though was less than an hour but the next time I tried she got really worried and upset and since then although occasionaly says she'll be ok when it comes to it shes scared and confused for me to leave her so I don't even try now. The only break I get is when she's in the shower, loo or asleep. When I'm in the loo or shower she often interupts me to ask things or moans I'm too long and wakes me up in the night too. I can't go to bed until she does, she wakes up during night and early in a morning and though she often nods off during the day and evening if my eyes ever droop she'll say VERY loudly, 'you're not going to sleep are you, well thats brilliant what am I supposed to do' or something similar.
My sister has been to stay with mum a couple of days twice during last few weeks and she's fine with sis but still wants to come see me too and keeps asking when she is seeing me. So although I saw her and mum in the day I did manage 4 nights sleeping at home in the last month, though most of it was spent looking on internet for things to do with dementia and doing housework but I did get a bit of a break which is more than some people have.
I know mum cant help being so self focussed but I feel like my life has been sacrificed for hers, much as I love and want to help and look after her it feels too much. And at the same time I keep doing it because I love her and just keep hoping for a miracle solution person who will come along to look after her which she'll accept so I can have a rest knowing shes safe and happy. Which I'm sure is how many people feel.
I hope you get your 'miracle' soon and find something your OH accepts to give you a break X
P.s sorry my long ramble I do go on

There does come a point with dementia when you TELL the person what is going to happen, and don't aim to please them. The dementia gradually takes away the person they once were, and you, in fact, end up trying to please a person who is no longer the person you loved.
I sat my OH down this week, made him switch off his beloved TV, and look at me - I told him very bluntly that he needed me ( or someone) to help him through his life, but that I simply did not need him - I could manage my life for myself. I then told him to behave, stop being sulky and nasty, because my suitcase was just in the garage, and without me he would be high and dry and in a nursing home.
He looked very shocked - but, at this point of his illness, he did seem to understand, and he has been better behaved since - it may well not last very long. But the cards are on the table.

 

[annielou]

There does come a point with dementia when you TELL the person what is going to happen, and don't aim to please them. The dementia gradually takes away the person they once were, and you, in fact, end up trying to please a person who is no longer the person you loved.
I sat my OH down this week, made him switch off his beloved TV, and look at me - I told him very bluntly that he needed me ( or someone) to help him through his life, but that I simply did not need him - I could manage my life for myself. I then told him to behave, stop being sulky and nasty, because my suitcase was just in the garage, and without me he would be high and dry and in a nursing home.
He looked very shocked - but, at this point of his illness, he did seem to understand, and he has been better behaved since - it may well not last very long. But the cards are on the table.

Well done x nice to hear something got positive results, Fingers crossed it continues X
Mum and I have talked about what I do and have given up to look after her at times but its usually mid upset or argument and she often says its not fair on me and she trys not to take it out on me but nothing changes really. Maybe saying it in a straight forward fashion on its own might work better.
Hope OH stays calmer and pleasant x

 

[Flavelle]

There does come a point with dementia when you TELL the person what is going to happen, and don't aim to please them. The dementia gradually takes away the person they once were, and you, in fact, end up trying to please a person who is no longer the person you loved.
I sat my OH down this week, made him switch off his beloved TV, and look at me - I told him very bluntly that he needed me ( or someone) to help him through his life, but that I simply did not need him - I could manage my life for myself. I then told him to behave, stop being sulky and nasty, because my suitcase was just in the garage, and without me he would be high and dry and in a nursing home.
He looked very shocked - but, at this point of his illness, he did seem to understand, and he has been better behaved since - it may well not last very long. But the cards are on the table.

Hear hear MaryJoan
I do sometimes feel frustrated by the desperation voiced by some carers who post. I feel they are being ground down by a system that focuses on the PWD at random times and then the mostly ignored carer at the most inappropriate times.
We create our own reality. It’s irresponsible to continue enabling a PWD to define the reality of others, as they are deluded, and sometimes the most caring communication is to shine a light on this.

 

[Guzelle]

My husband is just the same he has vascular dementia and want

 

[Guzelle]

My husband is just the same he has vascular dementia and wanting me all the time, getting annoyed if I spoke to anyone. Getting aggressive if I went out for a short while. He was seeing the mental health team who prescribed risperidone which would help for a while then the symptoms would be back. He did go out one afternoon a week with a support worker who worked for the mental health team. She would take him out for coffee an

 

[Guzelle]

And into the Peak District. She was good and wouldn’t take no for an answer.
He went into respite because I had to go into hospital I had to lie to get him there and pack a bag secretly. He is still there and I know it was time as I couldn’t carry on caring as I was very depressed. He is in there permanently now. He still wants to come home all the time and I do feel guilty. If he would have accepted Carers and day centres I would have looked after him at home. But you can’t reason with him it’s just impossible to carry on as we were. We have a baby grandson and he didn’t want me to see him and I would never let him stop me seeing him or looking after him I could not forgive that dementia or no dementia!

 

[SofaSoGood]

There does come a point with dementia when you TELL the person what is going to happen, and don't aim to please them. The dementia gradually takes away the person they once were, and you, in fact, end up trying to please a person who is no longer the person you loved.
I sat my OH down this week, made him switch off his beloved TV, and look at me - I told him very bluntly that he needed me ( or someone) to help him through his life, but that I simply did not need him - I could manage my life for myself. I then told him to behave, stop being sulky and nasty, because my suitcase was just in the garage, and without me he would be high and dry and in a nursing home.
He looked very shocked - but, at this point of his illness, he did seem to understand, and he has been better behaved since - it may well not last very long. But the cards are on the table.

I’m really pleased to read that because I’ve had to lay the law down to my father lately. He never lets up about some ridiculous thing (one after another) and expects others to do so much for him; it drives my mother and I crazy. In the end I just have to give it to him straight. When I say that he’s making my mother ill and is being very selfish he looks shocked. I even said that if he carries on like this he’ll end up in a Care Home because we won’t be able to cope ..... and he apologised!
I always feel guilty when I reach the end of my tether, but I do feel that endlessly indulging him about everything can’t continue
Tough love!

 

[maryjoan]

And into the Peak District. She was good and wouldn’t take no for an answer.
He went into respite because I had to go into hospital I had to lie to get him there and pack a bag secretly. He is still there and I know it was time as I couldn’t carry on caring as I was very depressed. He is in there permanently now. He still wants to come home all the time and I do feel guilty. If he would have accepted Carers and day centres I would have looked after him at home. But you can’t reason with him it’s just impossible to carry on as we were. We have a baby grandson and he didn’t want me to see him and I would never let him stop me seeing him or looking after him I could not forgive that dementia or no dementia!

As I have said before, I am not even married to my OH - when I went to see my baby grandson in Scotland, on the plane coming home, I realised I was actually neglecting my own family for this man I have only known for 9 years and for at least 5 of those years there has been some dementia coming on...... I am beginning to think I am potty, or just bamboozled into a corner by my own emotions for someone who no longer exists........

 

[Duggies-girl]

I agree @maryjoan I did dad's shopping today and at the same time I popped home. I had a cup of tea with my husband and got a hug from my lovely grown up son and then I came back to dad's. I am neglecting my family and my home and also my own health. I have a bit of a cold and a cough that I don't want to get worse. Dad has had the flu jab but I haven't. That says quite a lot in itself I think.

 

[Florencefennel]

As I have said before, I am not even married to my OH - when I went to see my baby grandson in Scotland, on the plane coming home, I realised I was actually neglecting my own family for this man I have only known for 9 years and for at least 5 of those years there has been some dementia coming on...... I am beginning to think I am potty, or just bamboozled into a corner by my own emotions for someone who no longer exists........

I am in the same position Maryjoan, I have only lived with my partner for 9 years too, although I have known him as a friend longer than that. I realise now that he was probably already living with Frontotemporal dementia long before we moved in together. He is no longer the person I loved and I am beginning to be quite determined to make sure I shall be able to survive financially if or when he has to go into care. I have got advice from good friends and I now allow myself to be quite tough with him when he is being unreasonable, dementia or no dementia! It usually works and he looks quite sheepish as though he knows he’s gone too far!

 

[Vitesse]

As I have said before, I am not even married to my OH - when I went to see my baby grandson in Scotland, on the plane coming home, I realised I was actually neglecting my own family for this man I have only known for 9 years and for at least 5 of those years there has been some dementia coming on...... I am beginning to think I am potty, or just bamboozled into a corner by my own emotions for someone who no longer exists........

You obviously have a different experience from me. I have been married to my husband for 30 years and have no other family to take account of. I hear what you say about telling the PWD what to do, and explaining that you will leave if he does not do what you tell him. I don’t know what stage your OH’s dementia is, but here 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. Everyone says I should consider my own well being, and I know that to be the case, but my husband is very important, and I know he would be trying to look after me if our roles were reversed.

 

[Stayingalive]

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?

 

[Stayingalive]

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.