I hope this doesn't sound too self pitying but I need to get this off my chest. When I read the threads in this forum, I think my situation isn't as bad as others but this weekend has been particularly hard emotionally. I feel so sad at my mum's situation, the grief and anger about this ******* illness is really hitting home today. I can't seem to stop weeping - I know this is all par for the course and it's no bad thing to have a real good sob and sort of get it out of your system but life has to go on and I have to be strong for mum.
Mum is in another town 100 miles away and she moved into the care home after having a bad fall in February resulting in a huge deterioration in her mobility. She's recently had a needs assessment and its clear she needs 24 hour care and wont be going home. I've been through different stages about whether she should stay in this particular care home as there were a few issues and I was even considering moving her down here to be closer to me and looked at 2 care homes in her area and 3 down here but lately I've thought she seemed a little more settled and she seems to be getting on OK with the carers and the home is somewhat familiar to her now (after 8 months) so I've have been worried about disrupting that. I met with the social worker and the manager the other day and we are communicating a bit better and I've definitely observed that mum seems more settled. The home is not perfect but perhaps overall its probably "good enough" but I don't know if I'm doing the right thing or should move her as mum is still wanting to go home. Mum frequently denies she lives there, she believes she has actually bought the place and that it "used to be a care home but isn't now" or that she works there and definitely doesn't sleep there, but at other times will tell people to "get out of my house", so at some level she must perceive she is at home, she definitely thinks her bedroom is hers.
When she gets so upset and wants to go home and insists she doesn't live there and wants me to take her home, I can't bear to see this distress, its so cruel this illness. She clung onto me yesterday weeping and in despair and I just had to be so strong and tell her she was ok and try not to cry myself. Its torture seeing her in this way, it feels like a trapped animal that we are trying to tame. Then at times she will have this insight and start crying or getting angry. I still don't know if its to do with this particular home and that she would be like this wherever she was, maybe they are not comforting her enough when she's distressed or don't understand her enough. It's so hard, there's never going to be any exact right place and if I moved her to an all singing/dancing home where there was more going on, no doubt there'd be something else that wasn't right and should I even put her through all this??. As you can see I am confused and anxious about whether I'm doing the best for mum. Unfortunately there is just me and no other family. I see her every couple of weeks. I stay in her house and visit her in the home, it is not great as being in her house when she isn't there feels weird and god knows what I'll do at Xmas. The emotions go up and down, this weekend was just particularly challenging.
I know its ok to post on here but I still feel guilty as I know others have to deal with their loved one on a permanent basis and its a relentless journey - I'm full of admiration for those who are still living with their relative, at least I don't have that though the emotional angst is constant. Please forgive the self pity, it has helped to just put some of this down. I've been writing in my diary and drawing/scrawling my emotions as best as poss, but only people who look after a PWD really understand. Thank you for this space.
Mum is in another town 100 miles away and she moved into the care home after having a bad fall in February resulting in a huge deterioration in her mobility. She's recently had a needs assessment and its clear she needs 24 hour care and wont be going home. I've been through different stages about whether she should stay in this particular care home as there were a few issues and I was even considering moving her down here to be closer to me and looked at 2 care homes in her area and 3 down here but lately I've thought she seemed a little more settled and she seems to be getting on OK with the carers and the home is somewhat familiar to her now (after 8 months) so I've have been worried about disrupting that. I met with the social worker and the manager the other day and we are communicating a bit better and I've definitely observed that mum seems more settled. The home is not perfect but perhaps overall its probably "good enough" but I don't know if I'm doing the right thing or should move her as mum is still wanting to go home. Mum frequently denies she lives there, she believes she has actually bought the place and that it "used to be a care home but isn't now" or that she works there and definitely doesn't sleep there, but at other times will tell people to "get out of my house", so at some level she must perceive she is at home, she definitely thinks her bedroom is hers.
When she gets so upset and wants to go home and insists she doesn't live there and wants me to take her home, I can't bear to see this distress, its so cruel this illness. She clung onto me yesterday weeping and in despair and I just had to be so strong and tell her she was ok and try not to cry myself. Its torture seeing her in this way, it feels like a trapped animal that we are trying to tame. Then at times she will have this insight and start crying or getting angry. I still don't know if its to do with this particular home and that she would be like this wherever she was, maybe they are not comforting her enough when she's distressed or don't understand her enough. It's so hard, there's never going to be any exact right place and if I moved her to an all singing/dancing home where there was more going on, no doubt there'd be something else that wasn't right and should I even put her through all this??. As you can see I am confused and anxious about whether I'm doing the best for mum. Unfortunately there is just me and no other family. I see her every couple of weeks. I stay in her house and visit her in the home, it is not great as being in her house when she isn't there feels weird and god knows what I'll do at Xmas. The emotions go up and down, this weekend was just particularly challenging.
I know its ok to post on here but I still feel guilty as I know others have to deal with their loved one on a permanent basis and its a relentless journey - I'm full of admiration for those who are still living with their relative, at least I don't have that though the emotional angst is constant. Please forgive the self pity, it has helped to just put some of this down. I've been writing in my diary and drawing/scrawling my emotions as best as poss, but only people who look after a PWD really understand. Thank you for this space.