Is anyone on here caring for a parent with advanced dementia?
How do you do it to the end without losing your mind?
We have been caring for mum for 8 years now and frankly, it’s breaking us. Since last summer mum has been double incontinent and almost non verbal apart from singular words here and there. We are lucky that she is fairly easy going, doesn't wander and doesn't have meltdowns or gets violent etc but everything now is about her comfort and care and second guessing all her needs. She looks thoroughly fed up most days and tbh, I don't blame her, what kind of life is it?
We have carers in 3 times a day but dad still struggles and so we (sister and I) help as much as we can which, between us is every day.
Yesterday on another SM platform I commented on someone else’s video, she was talking about her mother being in a care home and I was asking her some questions and said it’s something we are painfully contemplating and she kindly replied.
However since then I’ve been bombarded within the comments from other people telling me it’s a dreadful thing to put a parent in care and as children we should go above and beyond caring for a parent until the very end. Even when I’ve replied that it’s broken me after 8 years they reply with comments such as:- ‘I suggest you carry on caring for your mother for as long as you can’, ‘wait till you put your mum in one of those hell holes, then you will change your mind’, ‘Even the nicest looking care homes have evil people working in them’ or ‘Your mum looked after you all those years ago, it’s only right you should return the favour’. And then there’s one women who just keeps on and on and said this:- ‘I cared for my mum until the end. She was a wonderful loving mother who sacrificed so much for me, I WANTED to care for her, so I happily sacrificed my life the way she sacrificed hers for me, you should do the same’.……these type of comments keep coming.
I now feel so guilt tripped and wish I’d never replied to the OP to ask her a question. I feel absolutely dreadful now. I love my mum dearly and upon original diagnosis in 2018 we always vowed to care for her at home but I was naive and genuinely had no idea just how difficult caring for someone with double incontinence and advanced Alzheimer’s was going to be. On many dementia support groups, especially the US ones I regularly see quotes such as 'It was an absolute pleasure/blessing caring for my mom/dad and I would do it all again if I had to' - I feel dreadful because I've never seen it as a blessing, instead I've found it being draining and totally heartbreaking watching my dear mum being very slowly eroded away from such a dreadful disease.
The way these comments come at me leaves me feeling that most children (and I'm fairly sure most are women) give up their lives to care year after year for their parents and basically put their own life’s on hold for goodness knows how long? I have no idea if these people replying are single and have enough money to be able to put their lives on hold but I’m married, have (older) children still living at home, have a part time job and my own health issues. Giving up my life to care for my mum 100% would mean giving up on my DC, my husband and my health too. Is this what we are supposed or expected to do? Does society genuinely have a low opinion on those who place their loved ones in care (which I am sure for most is an extremely difficult decision to make).
These people's comments have genuinely broken me.