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She might not agree with what you're doing and probably feels resentment at the position she finds herself in but 🤷♀️. | |||
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"Also you are young so I guess your mum is too. If you don't set your boundaries very clearly as an adult woman who is entitled to any kind of safe, sane, consensual social life she wants now, how long will you have to live with this? I know I sound very harsh but having had 10 or more years of helping to care for my mum and now into the third year of helping to care for my dad I understand the pressures and practicalities very well. "She’s almost 74. I think what she can’t deal with is the fact that 2 months ago she was driving, cleaning, cooking etc and now as a result of a probably unnecessary hospital admission, she came home with hospital acquired frailty. I’m a registered healthcare professional, but she seems to think that one tablet will reverse her symptoms overnight. I seem to spend every minute of my waking hours reminding her that her body has to adjust (mainly because she was too stubborn to listen to advice in the first place) and she will not be fixed overnight. What’s worse is this is potentially just the beginning. We had an appt last week about some abnormal bloods and she needs to go for further tests to exclude cancer. I know already that if they’re positive, she’s going to get 1000 times worse. She’s already tried refusing injections that will ultimately benefit her because the last injections she had in hospital were painful (blood thinners into the stomach which hurt like hell) and she doesn’t want that. She’s also sick of taking 2 extra tablets a day on top of the one she took before all of this. I make food, she doesn’t eat it, I give her meds, she moans, I give her advice, she ignores it. And I’m so tired of it all now and it’s only been a month! | |||
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"Also you are young so I guess your mum is too. If you don't set your boundaries very clearly as an adult woman who is entitled to any kind of safe, sane, consensual social life she wants now, how long will you have to live with this? I know I sound very harsh but having had 10 or more years of helping to care for my mum and now into the third year of helping to care for my dad I understand the pressures and practicalities very well.
She’s almost 74. I think what she can’t deal with is the fact that 2 months ago she was driving, cleaning, cooking etc and now as a result of a probably unnecessary hospital admission, she came home with hospital acquired frailty. I’m a registered healthcare professional, but she seems to think that one tablet will reverse her symptoms overnight. I seem to spend every minute of my waking hours reminding her that her body has to adjust (mainly because she was too stubborn to listen to advice in the first place) and she will not be fixed overnight.
What’s worse is this is potentially just the beginning. We had an appt last week about some abnormal bloods and she needs to go for further tests to exclude cancer. I know already that if they’re positive, she’s going to get 1000 times worse. She’s already tried refusing injections that will ultimately benefit her because the last injections she had in hospital were painful (blood thinners into the stomach which hurt like hell) and she doesn’t want that. She’s also sick of taking 2 extra tablets a day on top of the one she took before all of this. I make food, she doesn’t eat it, I give her meds, she moans, I give her advice, she ignores it.
And I’m so tired of it all now and it’s only been a month!"I'm so sorry 🫂 and understand completely. My dad is nearly 99. He has been fit and healthy his entire life and still is considering his age he's had prostate cancer for years but it's progressed. He's always been very resistant to medication and I've had shouting matches with him to get him to take antibiotics so you can imagine how resistant he was to relugolix. 🤦. I'm only telling you this to illustrate that I know exactly what you're up against. I'll reiterate, for your own sake and the sake of your future self you're going to have to strong. I can understand how your mum's feeling but it is NOT your responsibility to manage that. Vent on here if it helps keep you sane and reassures you that you're doing the right thing and access any help you can | |||
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"Being a carer is very tough on the person, including as you highlight here. It sounds like setting and enforcing boundaries are essential for your wellbeing, so I'd recommend that you look at this. You could potentially get the local council to provide a regular appointment for a carer, to help to reduce some of the pressure on you. They have a duty of care to you and her. Perhaps get a carers assessment done on you. If you could have, say, 1 or 2 small breaks a week, which wouldn't need to be for you to get to swinging meetings but just for your own respite, it might be very helpful. As you'd offered to get a private carer in for this time, when you're out at the hotel, it's failing due to her not respecting your needs and boundaries. If you can get to establish the routine of having someone else providing some care, it establishes this as normal for her. It may be good for you to get in touch with a local carers group, as you might pick up some useful ideas and tips. Plus, it could support you in feeling less alone and vulnerable to her demands, etc. Just a few ideas, as it's such a pressured, unforgiving situation that you are in. You will be in a much better state, to be able to support her, if your needs for your own life and wellbeing are better met. I hope you get to be in a better position soon - potentially making use of that inflexible room booking too!" This ^^^ Perfectly said. What you are feeling is carer's guilt. You are entitled to a life away from your mother. | |||
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"Oh and also don't listen to all those people who tell you that it's your duty after everything your mum did for you or they wish their mum was still here to look after or the ones who patronisingly tell you you're a saint. They won't offer you any practical help. " Oh I don’t listen to them. I’ve always tried to be a people pleaser and I realised last year that being so nice to people in the scene wasn’t acceptable to some and have since made my life utter hell. So I now only surround myself with people who deserve my time. And I’ve not had more than an hour to myself in a month and if I don’t have a break I’ll literally go crazy! | |||
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"Oh and also don't listen to all those people who tell you that it's your duty after everything your mum did for you or they wish their mum was still here to look after or the ones who patronisingly tell you you're a saint. They won't offer you any practical help. Oh I don’t listen to them. I’ve always tried to be a people pleaser and I realised last year that being so nice to people in the scene wasn’t acceptable to some and have since made my life utter hell. So I now only surround myself with people who deserve my time. And I’ve not had more than an hour to myself in a month and if I don’t have a break I’ll literally go crazy!" And then what would your mum do!? I have a couple of friends who understand because they're in similar circumstances. We are each other's sounding boards we listen to each other complain about our parents with no judgement. Also I'm lucky in that Mr N is a great support and will point out when my dad is getting too demanding. I Have you decided what to wear on Saturday and arranged care for your mum yet? | |||
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"Oh and also don't listen to all those people who tell you that it's your duty after everything your mum did for you or they wish their mum was still here to look after or the ones who patronisingly tell you you're a saint. They won't offer you any practical help. Oh I don’t listen to them. I’ve always tried to be a people pleaser and I realised last year that being so nice to people in the scene wasn’t acceptable to some and have since made my life utter hell. So I now only surround myself with people who deserve my time. And I’ve not had more than an hour to myself in a month and if I don’t have a break I’ll literally go crazy! And then what would your mum do!? I have a couple of friends who understand because they're in similar circumstances. We are each other's sounding boards we listen to each other complain about our parents with no judgement. Also I'm lucky in that Mr N is a great support and will point out when my dad is getting too demanding. I Have you decided what to wear on Saturday and arranged care for your mum yet?" Offered care but she’s refused it. I worked a night shift from home last week and she didn’t need me at all during the night so I know she’ll be fine. It’s just the anxiety with her breathing and as an asthmatic I know how she feels (although she forgets I do sometimes). And no idea what to wear normal clothes wise! Drinks first then a club event so I have no clue what’s acceptable as I’ve generally only been to ‘wet’ clubs and never been to a ‘dry’ one! It’s what to wear before dressing down I’m struggling with! | |||
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"Hey all. After some advice from any fellow carers here (professionally or personally). I became full time carer for my mum just before Xmas. I’ve even been able to secure the ability to WFH so I could get off the sick and back to work. Her issues are complex and won’t resolve long term but her body will learn to adjust with time and patience, which she lacks! I have booked a hotel to go to a swing event Saturday so I can have a few drinks and have some belated birthday celebrations. I booked the non refundable option because it was the cheapest. I asked her over and over again if she wanted me to cancel before I booked it, she said no. Now I have and she found out I was going to a club instead of just an organised social, she’s been making me feel bad ever since (she knows about the lifestyle and she doesn’t like it). To the point where she’s saying things to force me to stay and twisting what I’ve said to her to try and prove that I’d said I’d cancel (like I’d asked her if she wanted me to cancel and told her I’d lose the hotel money if I did and she said no, but she now says she didn’t say no at all). I’ve given her options of getting family in for reassurance for her, she’s refusing. Offered to get a private carer in, she’s refused. She’s capable of spending a night alone as long as everything is ready for her, because when I did my first night shift last week she barely needed me for anything. Ive told her if her symptoms are that bad. I’d call the GP again or take her to A&E (breathing related) and she’s refused that as well. I’ve had zero social life or time to myself since 22/12 when she was discharged and I need a break. Any advice on what I can do to reassure her she’ll be fine? Or advice on stopping her making me feel so bad? " Hi, sounds very intense for you. As has already been said, you need to set boundaries. Being her carer is going to be the norm for a very long time so unless you sort this now it will only get worse and will eat away at you, ultimately you will lose out as resentment creeps in. As a carer we inevitably carry guilt, but in looking after ourselves we are better carers in the end. You have established over night she is fine so stick to that line that there are options around other carers overnight for the time you wont be there and be very clear with her you wont be there, give her the 2 options of private care or family but be firm that is the choice. Sounds like she is adjusting to a huge change in her life and has lost so much control that now she is trying to exert control over you over this issue. Its understandable why, but doesn't make it acceptable. You both have to adjust to a new norm and what happens now, will dictate how the future goes. You could frame it as your helping her maintain control/independence by deciding which she wants (private or other family member). For contact, my background is nurse (including palliative hospice nurse) and have been a carer for 4 immediate family members at varying times of their respective illnesses. | |||
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"Thanks all. What I can’t understand is she lent me some money to pay for the hotel, so in essence gave me the go ahead, then turned it around to say I said I’d cancel! And Sophie - I’d have booked in advance but I didn’t know what the event was until a few weeks ago. I usually do book rooms I can cancel up until the day before, but if I’d done it with a week’s notice, it would have pushed the price up by another £30" You deserve the ability to have control over your life. I don't know what conditions your mum has but some that impact on cognitive abilities, can help to produce behaviours that are seemingly callous and insensitive to others. This is incredibly tough, when we have been loved by someone through our life - that care and love somewhat seeming to have disappeared. If you can focus on boundaries establishment and enforcement, it may now stand you in good stead 
The other tragic aspect of elderly decline, is that things may get worse, as well as persist for the rest of their life 
Consider the carers groups local to you, who could be a good inspiration, for how things could be made better for you and indirectly your mum. | |||
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"Thanks all. What I can’t understand is she lent me some money to pay for the hotel, so in essence gave me the go ahead, then turned it around to say I said I’d cancel! And Sophie - I’d have booked in advance but I didn’t know what the event was until a few weeks ago. I usually do book rooms I can cancel up until the day before, but if I’d done it with a week’s notice, it would have pushed the price up by another £30 You deserve the ability to have control over your life. I don't know what conditions your mum has but some that impact on cognitive abilities, can help to produce behaviours that are seemingly callous and insensitive to others. This is incredibly tough, when we have been loved by someone through our life - that care and love somewhat seeming to have disappeared. If you can focus on boundaries establishment and enforcement, it may now stand you in good stead
The other tragic aspect of elderly decline, is that things may get worse, as well as persist for the rest of their life
Consider the carers groups local to you, who could be a good inspiration, for how things could be made better for you and indirectly your mum. "Thanks. She has osteoporosis of the spine, never had issues with it until November. Nobody could work out the root cause of the pain until she had an MRI 2 months later which showed 3 compressed discs. Started stronger pain relief for it which had multiple side effects plus deterioration where she stopped moving as much ended up getting her admitted to hospital due to shortness of breath, low oxygen levels ans a very fast pulse. Thought she has a blood clot. Whilst she was in a recliner waiting for a bed she felt and heard a crack as she changed positions (so loud the guy 2 chairs down heard it) and that’s when she deteriorated. She spontaneously fractured 2 of her thoraci vertebrae which accelerated her curvature which has now led to lung compression and permanant shortness of breath. She panics when it gets worse, which makes the breathing worse. We also found out last week that she may have myeloma (blood cancer) which may be responsible for the sudden deterioration in her bone density, so awaiting a bone marrow sample being taken. Since the weekend her breathing is worse as she’s got a build up of fluid in the legs (because the body is trying to compensate and adjust) and I’ve told her that it won’t be magically fixed with a pill overnight - it’s going to be a long rehab even without the myeloma possibility looming. I keep encouraging diaphragmatic breathing but she struggles with it. This is why she’s worried about being left, which I totally understand, but I can’t look after her if I’m exhausted and not getting a chance to take time for myself | |||
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"Thanks all. What I can’t understand is she lent me some money to pay for the hotel, so in essence gave me the go ahead, then turned it around to say I said I’d cancel! And Sophie - I’d have booked in advance but I didn’t know what the event was until a few weeks ago. I usually do book rooms I can cancel up until the day before, but if I’d done it with a week’s notice, it would have pushed the price up by another £30 You deserve the ability to have control over your life. I don't know what conditions your mum has but some that impact on cognitive abilities, can help to produce behaviours that are seemingly callous and insensitive to others. This is incredibly tough, when we have been loved by someone through our life - that care and love somewhat seeming to have disappeared. If you can focus on boundaries establishment and enforcement, it may now stand you in good stead
The other tragic aspect of elderly decline, is that things may get worse, as well as persist for the rest of their life
Consider the carers groups local to you, who could be a good inspiration, for how things could be made better for you and indirectly your mum.
Thanks. She has osteoporosis of the spine, never had issues with it until November. Nobody could work out the root cause of the pain until she had an MRI 2 months later which showed 3 compressed discs. Started stronger pain relief for it which had multiple side effects plus deterioration where she stopped moving as much ended up getting her admitted to hospital due to shortness of breath, low oxygen levels ans a very fast pulse. Thought she has a blood clot. Whilst she was in a recliner waiting for a bed she felt and heard a crack as she changed positions (so loud the guy 2 chairs down heard it) and that’s when she deteriorated. She spontaneously fractured 2 of her thoraci vertebrae which accelerated her curvature which has now led to lung compression and permanant shortness of breath. She panics when it gets worse, which makes the breathing worse. We also found out last week that she may have myeloma (blood cancer) which may be responsible for the sudden deterioration in her bone density, so awaiting a bone marrow sample being taken.
Since the weekend her breathing is worse as she’s got a build up of fluid in the legs (because the body is trying to compensate and adjust) and I’ve told her that it won’t be magically fixed with a pill overnight - it’s going to be a long rehab even without the myeloma possibility looming. I keep encouraging diaphragmatic breathing but she struggles with it. This is why she’s worried about being left, which I totally understand, but I can’t look after her if I’m exhausted and not getting a chance to take time for myself"Your life is precious. I hope you manage to restore more of it for you and the balance that you need! | |||
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"Defining boundaries can be very difficult for carers. Nobody should be a satellite to another person. You should respect her autonomy as much as she should yours. I suspect you would be damned if you went and damned if you don’t. Do whatever you can to make sure her needs are met and have a bloody good night out. You’ve earned it! PS I wouldn’t be saying this if I had any doubt that you were a selfish person looking for approval and emotional feed." Oh yes, I’ve just been reminded of that! Whatever I seem to do or say now is wrong, so I'm just keeping quiet! | |||
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"Whilst your hotel booking is not refundable, is it changeable to a different date? Maybe if you are told 'no', contact customer services and explain you can't attend on the booked date, due to carer responsibilities and you might get them to be sympathetic. It wouldn't get you to the same event, but it would enable you to go to another event and not lose your money, if you play it right with your mum and tell her what she needs to hear." Thank you. I’ve explained all of the above to her and that I can’t look after her if I’m totally burnt out and that I need time to recharge my batteries. Full scale fight ensued and had a walking stick waved in my direction! I’ve told her I’ll keep an eye on my phone for reassurance and will reply if she needs me to. But I’m currently on 2 weeks annual leave and so far all I’ve done is GP and hospital appts, food shopping, housework, house renovations and cooking. I’ve literally done nothing for myself until going for a wax today. My waxer said I need to keep booking in with her regularly now just so I can get an hour to myself! 🤣 | |||
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"Whilst your hotel booking is not refundable, is it changeable to a different date? Maybe if you are told 'no', contact customer services and explain you can't attend on the booked date, due to carer responsibilities and you might get them to be sympathetic. It wouldn't get you to the same event, but it would enable you to go to another event and not lose your money, if you play it right with your mum and tell her what she needs to hear. Thank you. I’ve explained all of the above to her and that I can’t look after her if I’m totally burnt out and that I need time to recharge my batteries. Full scale fight ensued and had a walking stick waved in my direction! I’ve told her I’ll keep an eye on my phone for reassurance and will reply if she needs me to. But I’m currently on 2 weeks annual leave and so far all I’ve done is GP and hospital appts, food shopping, housework, house renovations and cooking. I’ve literally done nothing for myself until going for a wax today. My waxer said I need to keep booking in with her regularly now just so I can get an hour to myself! 🤣" Ouch good luck and 🫂 to you lots would walk away | |||
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"Thanks all. Managed my night away and a couple more since. She now starts her chemo next week so going to get a lot tougher over the coming months, but she’s realised now that I need the breaks away" Excellent I was just thinking about you and your situation. It's difficult for all concerned isn't it | |||
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"Thanks all. Managed my night away and a couple more since. She now starts her chemo next week so going to get a lot tougher over the coming months, but she’s realised now that I need the breaks away Excellent I was just thinking about you and your situation. It's difficult for all concerned isn't it " Thank you. It is, especially when she’s been so good over the past 2 months and now she’s having a bad week (first chemo session down but was bad before that) and she’s back to where she was pre diagnosis. She’s struggling to swallow the tablets she needs to take because they make her gag/vomit but refuses to allow me to ask if liquid/dispersible options are available to make it easier for her. She’s refusing to allow me to contact the chemo nurse for advice on how to manage her pain as nothing is touching it. And today I lost my shit with the duty manager in work who told me I needed to be in work within 60 minutes because we had a trust wide phone issue that affected both in office and home working staff, and I told her that I couldn’t because I couldn’t drop everything to leave her as I couldn’t get care in within an hour and still be in work. She very helpfully then said ‘I’m sorry you’re in this situation with your mum, but we don’t allow home working to enable care for dependents. It’s in the policy’. Yeah cheers for that! So now I have no clue whether I can still WFH or whether I’m going to have to take sick for the long term to care for her (she refuses all external care support because we can’t afford it for a start and there are none that can do all day care either without it being private to cover me to go in the office). Plus I can’t survive currently on my basic wage as they’re not paying me at the correct pay banding so I’m down at least £500 a month so need to work extra to cover that shortfall | |||
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"Thanks all. Managed my night away and a couple more since. She now starts her chemo next week so going to get a lot tougher over the coming months, but she’s realised now that I need the breaks away Excellent I was just thinking about you and your situation. It's difficult for all concerned isn't it Thank you. It is, especially when she’s been so good over the past 2 months and now she’s having a bad week (first chemo session down but was bad before that) and she’s back to where she was pre diagnosis. She’s struggling to swallow the tablets she needs to take because they make her gag/vomit but refuses to allow me to ask if liquid/dispersible options are available to make it easier for her. She’s refusing to allow me to contact the chemo nurse for advice on how to manage her pain as nothing is touching it. And today I lost my shit with the duty manager in work who told me I needed to be in work within 60 minutes because we had a trust wide phone issue that affected both in office and home working staff, and I told her that I couldn’t because I couldn’t drop everything to leave her as I couldn’t get care in within an hour and still be in work. She very helpfully then said ‘I’m sorry you’re in this situation with your mum, but we don’t allow home working to enable care for dependents. It’s in the policy’. Yeah cheers for that! So now I have no clue whether I can still WFH or whether I’m going to have to take sick for the long term to care for her (she refuses all external care support because we can’t afford it for a start and there are none that can do all day care either without it being private to cover me to go in the office). Plus I can’t survive currently on my basic wage as they’re not paying me at the correct pay banding so I’m down at least £500 a month so need to work extra to cover that shortfall " That's a lot to deal with. | |||
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"You can ask your local adult services for: Care needs assessment (Mum) Carers assessment (you) Sometimes reverse parenting has to be done treat them similar to a child, with the person being cared for either being told this is how it's going to be, or offering them choices which doesn't include their preferred option. You will break both your sanity and own health unless firm boundaries are drawn. " Thank you. I’ve tried this all last week and failed, now sadly she’s back in hospital again because I couldn’t manage her at home and the oncology advice line recommended admission to find out why she suddenly developed pain again. It feels like we’ve just jumped back 3 months and back to where we were again. Sadly she’s getting more and more frail and I genuinely don’t think she’ll come home this time 😔 | |||
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"I'm so sorry to hear that, while I haven't been a full time carer to my Mum, I emphasise so much with what you are going through from my own experiences over the past 2/3 years. Mine is also back in Hospital, really unlikely to make it out this time and even if she did make it to medical fitness home is looking to be off the table. " I’m so sorry to hear this too. I never thought it would be so difficult to manage alone. Unfortunately I have very little input from other family and mum’s nearest direct relatives are in Glasgow. What’s worse for me is the future - there’s only the two of us and once she’s gone, a future alone for myself will be just as hard and I’ve already started thinking ahead as to what I will do when that time comes | |||
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