Wondering what to expect

I was wondering if anyone could tell me what to expect.. My Mum who is 80 and who is living with Alzheimers & a colostomy bag after previous surgery for bowel cancer has recently had a MRI scan that indentified further investigation needed as a large Polop needs removing from the site of the original tumour. When my Mum went for endoscopy  they found that is was too large to remove and have taken biopsies and advised that it will need to be removed piecemeal and I should wait for another appointment. After the MRI, as well as recommending this course of treatment - they also said that there was something identifed on the lung, and they would be having a Multi Agency meeting to discuss their findings and next steps. We have been referred to my Mum's original colorectal consultant for an appointment to discuss which is approaching 27th June but I have been waiting for what feels like a really long time - and I can't get any further information from GP or the hosptial on what this is likely to mean. Its very difficult as my Mum has fluctuating capacity, so sometimes understands, "I'm going back to the beginning" and then states that theere is nothing wrong with her! She is well". This is all filling me with a sense of foreboding. I am struggling to get through the days, as this has some at the end of a very stressful period as my Mum requires full time live in care. I live 200 miles away from her. My Mum also has a cough, undiagnosed COPD possibly? and has had two bouts of pnemonia that required hospitalisation, hence the full time care live in. On top of this, I am sole POA, and this has caused me to be estranged from my brother and family that live locally so all decision making is my responsilbity and I have to make a decision about moving my Mum into a care home due to funds. It has always been her wish to remain at home but her funds will not allow for home care for more than another 6 months, however if diagnosis of Lung cancer or secondary bowel cancer is likely  - I would then take equity out of the house so she could remain there to the end. Sorry - long post but its a complicated situation as im not sure how I will break this news to Mum - or indeed if she should be told although I don't imagine that my Mum's doctor will speak to me without my Mum being present. Has anyone had experience of anything similar either re what is happening with tests etc or explaining to someone with Alzeimers that their cancer has returned? 

  • Hi there ..

    Oh my ... so so sorry your going through this heartbraking time at the moment...

    My sister is early 80s ... and has late stage dementure ... and is now in a care home, for her safety ... 

    We, as a family have listened to each other .. feelings ... thoughts .. I mean really listen ... the most heartbraking think for your mum, is she seems to have multiple problems ... and even if you tell her .. a while later she will forget .. when my sister mentions our mum and her hubby ... both long gone ... but we go along with it .. saying they will be there soon ...

    I can only imagine how scary your mum is having all those tests ... l can't imagine my sister going through that mentally... this is only our opinion .. and every case should go on its merits ... but we've said now, my sister will not go through any extra tests .. 

    What do your siblings think .. I know you want to keep her in her own home, but with all that I'd think she'd need 24 / 7 care ... we are so lucky ... we, as he family, have never had a cross word .. which happens so much in these sercomstances... I think listening is the key .. there's always middle ground .. what do they think about all these tests ...  I really hope you can all come together ... and do what's best for your mum ... weigh everything up ... for and against ... and what quality of life for an altzhimas lady ... sending you a vertual hug... Chrissie  ....

  • Thanks Chrissie. Yes very frightening for my Mum to go through all these tests. After her last surgery we had a consultation re Chemotherapy and whether my mum would be a candidate for it. I made the decision that my Mum wasn't suitable for it, due to her current state of health and the doctor said that they agreed with me... my family weren't part of that consultation process as we can't be in the room together without shouting and I feel physically intimidated by my mum's brother and my brother. to be clear my mum has a carer who lives in with her 24/7 currently as she could not safely cope at home. I update my brother re all health information via text message and he never really comments accept to accuse me of not giving him information. He has also blocked my telephone number in the past so I was unable to inform him of Mum's ill health when she was staying with me until I went to her house and used her phone. He swings from having very unrealistic expectations of what my Mum can reasonably do (remember presents for her grandchild etc) to remark that she's "gone loopy". At no time over the years has he supported any of the memory clinic tests and appointments and to be honest they are really more stressful to my Mum than the cancer surveillance etc. I have tried to involve him in decision making in the past but unfortunately he would rather complain that I am doing everything wrong. Its very difficult to support my Mum through this process as its very hard for her, so being constantly criticised and viewed with suspicion about everything makes it harder for me!

    My Mums sister supports my views & the arrangement with the live in carer as between us we cover holidays & etc, but she lives abroad.

    I don't drive, and sometimes the logistics of getting my Mum to some of these appointments without putting her on hospital transport have been tricky. 

    Im glad you have the support of your family. Im sure that makes things slightly easier. 

    I really hate these two horrible diseases.. 

  • Hi there ..

    From what you've said it sounds like a nightmare ... but you sound like you put mum first ... now remember I'm no expert .. or always get things right .. this is just my thoughts ..

    It sounds like your bro and uncle will fight you whatever you do .. so when you can't please them, there comes a time you have to do what you think is right ... her sister is with you .. could she move to a care home nearer you ..  that's a lot of your problem is distance ... my heart goes out to you ... when both my parents died when I was in my 30s.... my sister's were 12 and 15 years older then me ... but never a cross word ... comming on here makes me realise how amazing that is ...

    But if it were us, we'd do what you've done already .. talk to the oncology team .. and ask them, is it really worth putting her through more tests etc ... ask them if it were their mum with so much medically wrong, what they'd do ... sometimes quality over quantity... for  just a little time she may get ...

    Always here if you want a chat .... Chrissie xx

  • Thank you! That is amazing. From going through this I've learned this situations either bring out the best in everyone or the worst. I would love to move my mum nearer me when that times comes but I fear more retributions and accusations. The other issue is that it is more expensive where I live...  that said, I haven't seen anything I consider suitable in her area. 

    Family discord is very difficult, and I think I have reached the stage when nothing I do is right in their eyes. My mum would definately tell you a different story to them and its really all that matters to me in the end.

    I suppose I have to sit tight and wait until I have spoken to the consultant on the 27th June. 

    Thanks for listening.