New and Useless

Hi, so sorry to hear about your Dads diagnosis, I’m guessing the distance might make it feel harder. It’s such a lot to process. 

I have just joined here this afternoon and the title of this jumped out to me. My mom has been diagnosed with 2 primary cancers and one has spread. She has been told it is non-curative. I have ADHD + Dyslexia. 

My mom is similar to what you describe, and refuses to talk about things, accept any form of emotional support, likes groups or counselling, and even tells fibs to people about things she has done. She doesn’t want anyone to know, she is estranged from family members and my brother and she refuses to let us tell anyone. 

I joined because I’m finding it increasingly difficult to support her and cycling between guilt, frustration and despair. I wonder if it’s a generational thing as we have discovered my mom seems to avoid things and it’s like if you don’t talk about something it isn’t real. If that makes sense. 

I feel like I must seem selfish and lack empathy, but I’m not trying to make it about myself. I’m trying my best to support her and be there for her and it’s very difficult. 

Hi KMox and SamJas

The title of this thread jumped out at me too. I SO identify with what you're both going through. My 91-year-old widowed Mum has terminal oesophageal cancer - diagnosed in January this year. I moved in with her as soon as we received the diagnosis (I live an hour away) but have seriously struggled with my own emotions - then feeling selfish and guilty for even thinking about myself when she's going through so much. 

At first she didn't want to tell anyone (Mum's generation is quite stoic and I think it's almost like cancer has brought shame on the family: it's not as if she's smoked or drunk or anything though. She's been healthy throughout her life until a broken hip a few years back). However, light has dawned now because she's pretty much bed bound and her friends have been asking so many questions about why she's not socialising any more (she's always been very independent). So we seem to have got over that particular hump and her close circle all know. 

My advice from my experiences of the last few weeks (and I'm still very new to all this) is:

* Do share information on the forums here - I've found they are full of useful guidance. Just hearing from other people who are going through the same horrible things helps. There's a 'carers only' forum which is useful.

* If there's a hospice nearby and you haven't had contact with them, check what they can do to assist. The hospice at home nurse who sees Mum has broken down a lot of barriers for me - eg asking for additional meds from the GP and arranging sitters so I could go home. I've found her to be far more helpful than the GP and district nurse (who came once and has never been seen again). 

* I've just organised a care package for three days a week. Again, the guilt of not being here all the time was overwhelming but I'm self-employed and my business was in danger of failing if I didn't go back occasionally. We've just had the first week of the care package and it seems to have gone well. There were a lot of financial hoops to jump through but I'm relieved to have done it. 

* I've found that Mum actually responds much better to the 'professionals' than she does to me. I guess I let her off things when she says she doesn't want to shower/doesn't want to eat. She puts on a PR job with them - while I get the rough end of the stick. So I've learnt to take whatever support I can get - everyone says you can't give the right support if you're going under yourself, and it's true. 

I wish you both well on this awful journey we're on. Love and best wishes coming your way.

Hi 

Thanks for your reply.

I understand the frustration. 

I'm an only child and being so far away is hard though I have offered to go home to Manchester but he says he's fine. He doesn't like fuss, never has done. It is difficult because you want them to do the best for themselves like I think my dad should take advantage of the services offered to him now and I am afraid he will leave things too late. He told me the other day he has lost a stone in weight which is a sign but he reckons it's because he's stopped eating late at night.

I've lost a few people through cancer and I know how quick it can take hold sometimes and it feels like he is ignoring it. 

He's had a rough few years coping with his deterioration of his COPD and he is fed up with it all. I just don't want him to suffer.

Hi

Thanks for your reply and advice.

I'm an only child and being so far away is hard though I have offered to go home to Manchester but he says he's fine. He doesn't like fuss, never has done. It is difficult because you want them to do the best for themselves like I think my dad should take advantage of the services offered to him and I am afraid he will leave things too late

I don't know what the Macmillan pack he was given was, but he's refused to go ahead with what they were offering. They offer these things for a reason. He too is independent he still insists in cooking meals for him and his wife. It's just all so frustrating. I can't see his wife sorting anything though to be honest