I’m so relieved and glad to have found this forum as I too am in a full time “caring” role with my mother with whom I’ve had a very difficult relationship all my life. Much of what has been written here resonates strongly with me. I’ve had to change my whole life, move into my mother’s house and have become her full-time carer. I’m 49 I’m constantly exhausted and am alone in all this as my mum has pushed away most of the people who have known her. I have one sister, she lives in a different country and actually hates mum and has no involvement at all with any care. As others have said it is too hard not to feel like a very bad person when you cannot feel affection for the person you care for, especially when seemingly most of the information or advice about caring for somebody with dementia revolves around having a close relationship with that person. I too am in the situation where mum is verbally abusive or belittling with me but she is delightful and appears sociable with others - in particular the social workers that have recently been involved , when I came apart at the seams. I am now very aware of the term “confabulation” and how this is a common behaviour in somebody suffering from dementia. But I have found it more difficult because my social worker seems oblivious to the fact that confabulation is a part of dementia and that my mum will appear perfectly rational and capable when this is not in fact reality and is mum’s way or her brain’s way of protecting herself and fighting for survival on some level. The hardest part of this is that she tells people that she does everything herself and that she doesn’t need help and they believe her and up until very recently nobody; doctors or social workers or people that knew mum previously, would believe me that there was anything wrong with mum. I have learned a great deal about dementia thanks to the Alzheimer’s Society and I would like to be able to feel that I am being compassionate but most of the time I’m so exhausted and feel belittled by my mother all of the time, it is nearly impossible to find any compassion. I guess, the very fact that I am living here in her house and that I’ve changed every aspect of my previous daily/weekly routine to now be here, to make sure she’s clean, dressed appropriately, fed a more balanced diet (rather than all those chocolate biscuits that have been mentioned in another post), that she is kept safe and has somebody fighting for her to get proper medical help, must mean I have some compassion somewhere, even if it is just as if I was caring for any human being ,not necessarily somebody I am related to or with whom I’m supposed to have strong emotional connection.
Being unable to have any proper conversation now, due to dementia-related communication problems; the inability to follow a train of thought or process information and my mum’s refusal to wear hearing aids (even though she has significant hearing loss in both ears) is extremely lonely, exhausting and very depressing. Mum and I never shared the same wavelength and are polar opposites; spiritually , politically and emotionally. She always was a very judgemental, pessimistic , detached, cold person lacking empathy or sensitivity and has always been really difficult to talk to , way before any dementia appeared. Finding out that others are experiencing the same emotions of guilt when stuck in this position, when there’s nobody else and you feel a huge sense of obligation to not abandon this family member, has helped me feel less isolated. My mother is 91 and apart from arthritis and now the dementia affecting her mobility, she is remarkably “healthy” for her age and I see that I could be in this position of sole full time carer for quite a number of years which is so overwhelming to think about for too long. Mum refuses any help, so for the foreseeable future , I will have to continue somehow even though she doesn’t listen to me and refuses to use her walking aid , her hearing aids and will continue to get increasingly unsteady and will have more falls , whether I’m here in the house and garden or not.
I have to leave her occasionally to go and get groceries et cetera and she promises she will not go outside on her own but of course she does and she does not use the rollator . I am anxious all the time and worried about finding her lying on the ground or in the house , unable to get up or unconscious or dead , when I get home again. I somehow have to stop the feeling of being trapped here due to guilt and the fear of what might happen if I’m out and she does fall and either really hurts herself or dies as a result of it. She will not let anyone help and will not let anyone from social care come and sit with her while I go out. It feels like a prison of sorts and I hate it and I know this is all affecting my own health quite badly. I don’t know how long I can continue. I imagine that there will be another crisis (there have been two already during these last two years of me being sole carer).
I hope I will make better use of any respite offered in future rather what happened the last time when I was so ill and exhausted as well as trying to catch up with all the jobs in the house, (that I had not been well enough to do or allowed to do, while Mum was at home) instead of taking the time to rest and discover that I still have some life of my own. That was mum’s first experience of a care home when I needed that respite following another TIA - which she told everyone had not happened and that I had made it up. At least it was a positive experience for her while she was there. I was torn between the relief of her not being in the house and the guilt of her having to go away into a care home because I couldn’t cope any longer. There were three weeks of respite but when mum returned I was just still so tired and stressed and didn’t feel ready to start the role of carer yet again when there is no thanks or appreciation or any warmth or affection in either direction. I feel for anyone in this kind of situation. There really is no solution in this impossible kind of relationship - you will always feel bad I think and I don’t think the inevitable death of the person you care for will necessarily bring any great relief and that subsequent grief will be quite complicated and I imagine I will feel a great deal of guilt and I really will need somebody to help me through that when the time comes.