Major Wobble
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Sorry it’s a long one!!!
I have written some of this on here before but just need to put it all in context. Well, we are only 10 weeks from The Knock and I am still struggling. My OH has been honest with me and I’m supporting him 100% through this. We have been together for over 30 years and he is my best friend. I have spoken to the Stop It Now help line 3 times now but its difficult to talk in front of my OH and he is always here.
I am my OH full-time carer and he requires 24 hours care, he is housebound and spends his days confined to his adapted armchair or in his adapted bed. He has a progressive illness and there is no treatment. He has been suffering from depression/anxiety and panic attacks as part of his condition and every time he loses the ability to do something he goes through a period of mourning. I can understand how he ended up where we are now but that doesn’t help.
We have been proactive and yesterday my OH signed up to the Inform Plus course which was a positive move. I have become a bit obsessed with reading the forum as need something. We try and support each other but to be honest it’s a bit one way as every time I talk about anything I am feeling my OH gets all stressed and upset, it ends up escalating. I end up feeling worse. We are not telling anyone neither friends nor family, so I feel totally isolated.
I really wanted to do the on-line chat today but didn’t realise it ended at 12pm and I was working this morning. I work from home, I just needed to get my thoughts off my chest. Its going to sound like I am a terrible person.
After my OH had his initial discussion on Zoom about Inform Plus I thought I would check out the Inform course. I decided that it was not practical for me to do with work and having no real privacy. I just mentioned to OH last night that I had decided not to do the course and he reacted badly. He said he didn’t think I was even considering it and seemed upset that I had. This made me cross, he treated it somehow as a dig at him. Went to bed angry but decided not to mention it, I felt upset and have been very depressed for weeks. I have felt like crying all day. Later today my OH mentioned last night and we got into a discussion I didn’t want ending in him in a state and having a panic attack. He told me he wished he was dead.
I can categorically say that there was never a chance or a thought that I would not have supported him, however I feel angry about what he has done and the deceit involved. I am angry that he has taken what was already a pretty crappy and stressful life and made it 100% worse. He is totally dependant on me for everything. Its not his fault and he is extremely vulnerable and as I say I would have stayed with him anyway but when I read the forum where you are all having to make this decision, I am angry that I didn’t really have a choice and so its like its taken for granted. I know that is so bad.
I will deal with it, I just think I can’t share with him how I feel. When he gets upset I make sure he talks about it and we get him in a better place but it doesn’t work the other way. Its guilt on his part so there is a defensive instinct because he has done this to me. Understanding him doesn’t make it any easier really.
I have written some of this on here before but just need to put it all in context. Well, we are only 10 weeks from The Knock and I am still struggling. My OH has been honest with me and I’m supporting him 100% through this. We have been together for over 30 years and he is my best friend. I have spoken to the Stop It Now help line 3 times now but its difficult to talk in front of my OH and he is always here.
I am my OH full-time carer and he requires 24 hours care, he is housebound and spends his days confined to his adapted armchair or in his adapted bed. He has a progressive illness and there is no treatment. He has been suffering from depression/anxiety and panic attacks as part of his condition and every time he loses the ability to do something he goes through a period of mourning. I can understand how he ended up where we are now but that doesn’t help.
We have been proactive and yesterday my OH signed up to the Inform Plus course which was a positive move. I have become a bit obsessed with reading the forum as need something. We try and support each other but to be honest it’s a bit one way as every time I talk about anything I am feeling my OH gets all stressed and upset, it ends up escalating. I end up feeling worse. We are not telling anyone neither friends nor family, so I feel totally isolated.
I really wanted to do the on-line chat today but didn’t realise it ended at 12pm and I was working this morning. I work from home, I just needed to get my thoughts off my chest. Its going to sound like I am a terrible person.
After my OH had his initial discussion on Zoom about Inform Plus I thought I would check out the Inform course. I decided that it was not practical for me to do with work and having no real privacy. I just mentioned to OH last night that I had decided not to do the course and he reacted badly. He said he didn’t think I was even considering it and seemed upset that I had. This made me cross, he treated it somehow as a dig at him. Went to bed angry but decided not to mention it, I felt upset and have been very depressed for weeks. I have felt like crying all day. Later today my OH mentioned last night and we got into a discussion I didn’t want ending in him in a state and having a panic attack. He told me he wished he was dead.
I can categorically say that there was never a chance or a thought that I would not have supported him, however I feel angry about what he has done and the deceit involved. I am angry that he has taken what was already a pretty crappy and stressful life and made it 100% worse. He is totally dependant on me for everything. Its not his fault and he is extremely vulnerable and as I say I would have stayed with him anyway but when I read the forum where you are all having to make this decision, I am angry that I didn’t really have a choice and so its like its taken for granted. I know that is so bad.
I will deal with it, I just think I can’t share with him how I feel. When he gets upset I make sure he talks about it and we get him in a better place but it doesn’t work the other way. Its guilt on his part so there is a defensive instinct because he has done this to me. Understanding him doesn’t make it any easier really.
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D53
It will be no consolation to you but my partner is not really interested in hearing about how I feel either. Initially I thought he was dismissing my feelings, perhaps because he was too wrapped up in his own feelings, but lately I think is more that he can't deal with the pain I'm in and that he is the root cause of it. It just makes him feel terrible so he just doesn't want to hear it. I've had counselling but though he is on the surface supportive of me getting this help, at the same time I know he doesn't like me doing it. I suspect its because again it makes it real what he has done to me.
His porn habit has been extremely hurtful and distressing for me despite his assurances that it had nothing to do with his feelings for me and he doesn't think I should be upset. I have also come to realise that I wi probably never really know the truth, and the trust issues are a big problem for me. To be honest, this whole business has ruined our relationship, I don't think it will ever return to as it was and I worry that, even if we get through this relatively unscathed, our relationship won't survive.
Many on this forum have commented how strong we non offending partners, parents and family members have to be. I am realising that I am far stronger than I imagined, and my partner is a lot weaker than I thought. I am trying to hold things together meantime but making contingency plans.
You do need to think about yourself first of all. I understand that you are your partners carer, but he chose to behave as he did and he has to take responsibility for his actions which includes acknowledging that he has hurt you and that you need support. Fair enough that he is not able to support you but he should not be huffy about you getting support from elsewhere, whether this is the inform course, counselling or whatever. Be strong, and get yourself some help.
It will be no consolation to you but my partner is not really interested in hearing about how I feel either. Initially I thought he was dismissing my feelings, perhaps because he was too wrapped up in his own feelings, but lately I think is more that he can't deal with the pain I'm in and that he is the root cause of it. It just makes him feel terrible so he just doesn't want to hear it. I've had counselling but though he is on the surface supportive of me getting this help, at the same time I know he doesn't like me doing it. I suspect its because again it makes it real what he has done to me.
His porn habit has been extremely hurtful and distressing for me despite his assurances that it had nothing to do with his feelings for me and he doesn't think I should be upset. I have also come to realise that I wi probably never really know the truth, and the trust issues are a big problem for me. To be honest, this whole business has ruined our relationship, I don't think it will ever return to as it was and I worry that, even if we get through this relatively unscathed, our relationship won't survive.
Many on this forum have commented how strong we non offending partners, parents and family members have to be. I am realising that I am far stronger than I imagined, and my partner is a lot weaker than I thought. I am trying to hold things together meantime but making contingency plans.
You do need to think about yourself first of all. I understand that you are your partners carer, but he chose to behave as he did and he has to take responsibility for his actions which includes acknowledging that he has hurt you and that you need support. Fair enough that he is not able to support you but he should not be huffy about you getting support from elsewhere, whether this is the inform course, counselling or whatever. Be strong, and get yourself some help.
Thank you for your replies Daffodil & Bitterbean.
I have had support from family & friends but am finding that I am a little reluctant to make too much contact in case they realise there is something major wrong rather than the usual carer stress. I have told my family that my OH is feeling very down and suicidal but that is more to try and explain why I am a bit more stressed. We haven’t told his parents anything as they find life hard having a son with such disabilities and feel helpless.
In terms of SS support that is a little more complicated, I have had conversations with SS and in fact we were referred to Adult SS by the Police after the knock. He hasn’t got a SW. The care available just does not match our circumstances at the moment. We are in our early 50’s and do not want my OH being got up and put to bed at times not of our choosing. We like watching films/TV in the evening and go to bed pretty late. OH is still coming to terms with having to have help from me when he uses the commode so he is not ready mentally for a stranger to be doing this type of intimate care. We manage pretty well. We had to weigh up the benefits against the intrusion in our life. We have a Neuro Rehab Team if we need anything like equipment etc and the OT is brilliant. I do not go out much but partially that is due to me, I could go out briefly, if I am not far away, but during covid I got used to being in and tend to make excuses for not going out. I do have a large garden so try and get out there so we have our own space. I need to sort that out but not strong enough at the moment.
Our GP surgery is not much help at all, I only managed to get us both an increase in our anxiety meds by having a full melt down on the phone to the receptionist. Appointments are like gold dust, and everything is by e-consult and I don’t feel its confidential. I am registered as his carer with the GP but don’t get Carers Allowance due to my part-time earnings.
I feel a little better today and OH and I have had a chat, he read my post and says he understands more how I feel.
Thank you again, taking each day as it comes I suppose.
I have had support from family & friends but am finding that I am a little reluctant to make too much contact in case they realise there is something major wrong rather than the usual carer stress. I have told my family that my OH is feeling very down and suicidal but that is more to try and explain why I am a bit more stressed. We haven’t told his parents anything as they find life hard having a son with such disabilities and feel helpless.
In terms of SS support that is a little more complicated, I have had conversations with SS and in fact we were referred to Adult SS by the Police after the knock. He hasn’t got a SW. The care available just does not match our circumstances at the moment. We are in our early 50’s and do not want my OH being got up and put to bed at times not of our choosing. We like watching films/TV in the evening and go to bed pretty late. OH is still coming to terms with having to have help from me when he uses the commode so he is not ready mentally for a stranger to be doing this type of intimate care. We manage pretty well. We had to weigh up the benefits against the intrusion in our life. We have a Neuro Rehab Team if we need anything like equipment etc and the OT is brilliant. I do not go out much but partially that is due to me, I could go out briefly, if I am not far away, but during covid I got used to being in and tend to make excuses for not going out. I do have a large garden so try and get out there so we have our own space. I need to sort that out but not strong enough at the moment.
Our GP surgery is not much help at all, I only managed to get us both an increase in our anxiety meds by having a full melt down on the phone to the receptionist. Appointments are like gold dust, and everything is by e-consult and I don’t feel its confidential. I am registered as his carer with the GP but don’t get Carers Allowance due to my part-time earnings.
I feel a little better today and OH and I have had a chat, he read my post and says he understands more how I feel.
Thank you again, taking each day as it comes I suppose.
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