Hello.
I’ve been my Mum’s sole live-in carer for over three years - I live in her house . Mum is 92 and has mixed dementia but presents extremely well and coherently to social workers etc especially since being put on Donepezil and Memantine.
I have struggled from day one as our relationship is complex and difficult - there’s also a big age gap as I’m 50.
I’ve experienced burn out several times but this summer it has been severe and resulted in me needing Mum to have replacement respite care in June , for two weeks, only for her to return to the same care home at the end of July as I’m not well enough now to look after her. She luckily agreed to go back to this care home which is the best and nicest she has ever stayed in. She has never withdrawn into herself while at this home unlike previous respite stay experiences which were really unsatisfactory and very upsetting for me as I was riddled with guilt.
Mum suffers from depression normally while under my care at home - this lifted within a week of staying at her new seaside care home and the same has happened on this second stay there - her depression symptoms had actually returned within a few days of being back home with me in July . That’s hard to see as I of course feel it’s my fault that she’s so depressed even though I know it is part of her illness.
She is physically fitter at the home as she gets more exercise there and has to walk (with her rollator) further along corridors to the fab sitting rooms which have either sea or mountain views and she walks a good distance also to the dining room. It’s a small home and they don’t take people with the worst later stages of dementia so the other residents are not all asleep all day long like at other homes . Mum was assessed at home by the care home manager which was amazing and she was thankfully accepted as suitable to stay there . I know she would have a better quality of life there and more stimulation than she would have staying here at home. She of course believes home is best so I’m struggling to help her to realise that she is better where she is now and that I can no longer care for her as I’ve been doing. I am overwhelmed by stress , anxiety and guilt and I already suffered from complex PTSD problems before I became Mum’s carer so my life and symptoms are now almost impossible to manage with the added daily stress and worry of caring for Mum and everything has become “all about Mum” . I have forgotten who I used to be and am now very disconnected from anything outside of my “caring” role at home. That’s in inverted commas because I don’t feel I “care” properly at all and feel I am a failure for not being able to keep going.
I can see that if she would agree to stay at this home , I could recover hopefully quite a bit and then have energy again to be able to take her out and maybe even enjoy some time together rather than it always being so strained with my visits making her annoyed whilst giving me full blown panic attacks every time I have to go and see her. There is no other family support . I’m on my own and have ended up without any hope of social life with friends for a break from this, as they’ve all slowly disappeared . I know this isolation happens to many many people in this position. I feel however that I should be “sucking it up” and just continuing on and not being so selfish to want to find some sort of life for myself again but my body and mind are now clearly screaming at me to stop and realise I’m really harming my health and it is stupid to keep pushing on and expecting to be able to go back to having Mum at home whilst she is getting further into the much later late stages of dementia. I’m in severe constant pain now throughout my body - I have arthritis and fibromyalgia but right now this is off the charts type of pain and my mobility isn’t good at all. My mental health is fairly shattered - anxiety is unbearable , mood is either rock bottom or I’m having manic episodes triggered by the stress and not sleeping for days and not eating. I’ve told my Mum’s care manager about this but I still think she would send Mum home again if Mum says a definite “no!!” to any suggestion about respite time turning into longterm care.
There is no easy answer . Many are in far worse situations . Mum is safe where she is , the care is excellent and the home is amazing . I don’t want her to lose the room in this home as an emergency situation down the road, if she came home, would mean she could be placed into any of the really awful alternatives . She’s so lucky compared to others. I need to find a way to stay strong enough to be able to say “Mum I can’t do this anymore and the care here at this lovely care home is what you need right now as I can’t provide enough for you back at home” …or something along those lines .
I think of all the social care hurdles and obstacles and the excruciating battle for diagnosis that I’ve been through already and the horrendous resistance from Mum in the early days and the battles with her at home about using a rollator etc and the rough days of her aggressive behaviour etc before the meds and I need to realise how far I’ve come and how much better she is now that I’ve got the doctors and social care team to support her properly . But….. I still feel my own life is over and I’ve nothing more to give and the guilt of me having now seemingly given up on Mum and wanting to say “I’m out” is horrendous……
I’ve been my Mum’s sole live-in carer for over three years - I live in her house . Mum is 92 and has mixed dementia but presents extremely well and coherently to social workers etc especially since being put on Donepezil and Memantine.
I have struggled from day one as our relationship is complex and difficult - there’s also a big age gap as I’m 50.
I’ve experienced burn out several times but this summer it has been severe and resulted in me needing Mum to have replacement respite care in June , for two weeks, only for her to return to the same care home at the end of July as I’m not well enough now to look after her. She luckily agreed to go back to this care home which is the best and nicest she has ever stayed in. She has never withdrawn into herself while at this home unlike previous respite stay experiences which were really unsatisfactory and very upsetting for me as I was riddled with guilt.
Mum suffers from depression normally while under my care at home - this lifted within a week of staying at her new seaside care home and the same has happened on this second stay there - her depression symptoms had actually returned within a few days of being back home with me in July . That’s hard to see as I of course feel it’s my fault that she’s so depressed even though I know it is part of her illness.
She is physically fitter at the home as she gets more exercise there and has to walk (with her rollator) further along corridors to the fab sitting rooms which have either sea or mountain views and she walks a good distance also to the dining room. It’s a small home and they don’t take people with the worst later stages of dementia so the other residents are not all asleep all day long like at other homes . Mum was assessed at home by the care home manager which was amazing and she was thankfully accepted as suitable to stay there . I know she would have a better quality of life there and more stimulation than she would have staying here at home. She of course believes home is best so I’m struggling to help her to realise that she is better where she is now and that I can no longer care for her as I’ve been doing. I am overwhelmed by stress , anxiety and guilt and I already suffered from complex PTSD problems before I became Mum’s carer so my life and symptoms are now almost impossible to manage with the added daily stress and worry of caring for Mum and everything has become “all about Mum” . I have forgotten who I used to be and am now very disconnected from anything outside of my “caring” role at home. That’s in inverted commas because I don’t feel I “care” properly at all and feel I am a failure for not being able to keep going.
I can see that if she would agree to stay at this home , I could recover hopefully quite a bit and then have energy again to be able to take her out and maybe even enjoy some time together rather than it always being so strained with my visits making her annoyed whilst giving me full blown panic attacks every time I have to go and see her. There is no other family support . I’m on my own and have ended up without any hope of social life with friends for a break from this, as they’ve all slowly disappeared . I know this isolation happens to many many people in this position. I feel however that I should be “sucking it up” and just continuing on and not being so selfish to want to find some sort of life for myself again but my body and mind are now clearly screaming at me to stop and realise I’m really harming my health and it is stupid to keep pushing on and expecting to be able to go back to having Mum at home whilst she is getting further into the much later late stages of dementia. I’m in severe constant pain now throughout my body - I have arthritis and fibromyalgia but right now this is off the charts type of pain and my mobility isn’t good at all. My mental health is fairly shattered - anxiety is unbearable , mood is either rock bottom or I’m having manic episodes triggered by the stress and not sleeping for days and not eating. I’ve told my Mum’s care manager about this but I still think she would send Mum home again if Mum says a definite “no!!” to any suggestion about respite time turning into longterm care.
There is no easy answer . Many are in far worse situations . Mum is safe where she is , the care is excellent and the home is amazing . I don’t want her to lose the room in this home as an emergency situation down the road, if she came home, would mean she could be placed into any of the really awful alternatives . She’s so lucky compared to others. I need to find a way to stay strong enough to be able to say “Mum I can’t do this anymore and the care here at this lovely care home is what you need right now as I can’t provide enough for you back at home” …or something along those lines .
I think of all the social care hurdles and obstacles and the excruciating battle for diagnosis that I’ve been through already and the horrendous resistance from Mum in the early days and the battles with her at home about using a rollator etc and the rough days of her aggressive behaviour etc before the meds and I need to realise how far I’ve come and how much better she is now that I’ve got the doctors and social care team to support her properly . But….. I still feel my own life is over and I’ve nothing more to give and the guilt of me having now seemingly given up on Mum and wanting to say “I’m out” is horrendous……