Hi Clare, I’m caring for my sister with NSCLC with brain mets, diagnosed on Christmas Eve, she is living with us as she cannot live alone, needing to be prompted to do everything. She knows her prognosis is poor and that treatment is palliative only, but like your mum she doesn’t want to do anything I suggest to make her remaining time more interesting. I find this so frustrating. She used to enjoy reading but doesn’t want books or magazines now, or to listen to audiobooks, and she isn’t interested in puzzles or jigsaws, or listening to music. I just feel that despite her illness, her life could be so much better. I’m her carer and have given up work to look after her, but feel I should be doing so much more to stimulate her and should be able to find something that she would enjoy doing. 

She was estranged from her sons for many years but I persuaded her to let them visit, hoping that seeing them and her grandchildren would bring an extra dimension into her life, but after their first visit she hasn’t wanted to see them again, although I keep them up to date with her condition. Her answer to any suggestion of outings or activities is that she just wants to sit quietly. Of course that’s fine but I would love to take her out, while she is still mobile to a degree, and help her to enjoy the time she has left.

But I know that if I tried to force the situation she would be distressed, so although it goes against the grain with me ( used to a busy life and with lots of hobbies to occupy my time) I try to make her daily routine as smooth as possible so she knows what to expect, and not overwhelm her with ideas and suggestions. It took a good friend to point out to me that perhaps I wanted her to be more active to make myself feel better, and that just because it wouldn’t be the way I would choose to pass my time if I was in her situation doesn’t mean she’s wrong.

Sorry I don’t have any magic words of wisdom but there must be lots of carers with the same concerns, it comes from wanting the best for your loved one. Perhaps just sharing your worries like this will be helpful, I hope so.

Hi,

My mum is 76 and has terminal bowel cancer, she also has dementia.

We found out just this weekend so I asked mum about things she wanted to do.... nothing ! "When your times up" ... she said.

My dad also has very advanced dementia and they both just sit and watch crap TV all day. They don' like going out and to be honest their mobility is very limited.  I care for them both full time with my sister and two carers.

She loves pampering... so I'm just booking appointments for nails, head massage etc.  I' d love to do more ... but these are her wishes, she's happy in herself.  I just have to accept that she doesn't  want to go to the Ritz for lunch for example.( Maybe  because that's what we would do)  It's her life and I respect that.  We just chat, laugh and I pamper her, we do call her Queenie after all.

Take care and sending hugs xx

Thanks NannyPaddy for your reply. Just knowing that there is someone else in a similar situation is so helpful and yes you are correct, that my concers are only because I want the best for her. My mum is so sefless and asks for nothing. I should be grateful, but just want her to reach out to others and need their support and to grasp what little life she has left, but she seems not to bothered and is happy to be on her own. She was an only child and has always spent time on her own and is self sufficient. 

In my head I have to to stop mum's lack of appetite for life, affecting me so much ,but I find it so depressing and life sapping.I have to have a mind shift as it's not about me and how I feel, it's about mum and what she wants. 

Maybe your sister is not interested in keeping in contact with her sons and grandchildren as perhaps it's too difficult to think about them and the regrets that undoubtably will go hand in hand, but easier to push their memory out of her mind. What a great sister she has doing all this .Keep going, you are doing a brilliant job.