Hello,
My mum was diagnosed with temrinal cancer in January this year She's been ill since last year but had been too stubborn to go to the doctors so in reality I've been caring for her since October last year. It came as a total shock as we were led to believe it was a possible ruptured gall bladder. Anyway she decided straight away she wanted to come home. I raised my concerns as to how I would manage as it's just me who lives with her. I was assured by hospital staff that under a fast track discharge there would be visits form carers, community nurses and Macmillan nurses and I'd get all the help I needed. Well in reality all they arranged was the patient transport to dump her at the front door. After a couple of days the only person to turn up was the occupational therapist who was so shocked that although it wasn't her job helped me chase everything up. The first few days of mum being home seemed promising as the morphone kicked in she seemed less pain and more mobile than she had been for ages. However one day that week she went to bed and has pretty much not got up since bar the odd hospital admission for infections. She lays in bed all day, doesn't want visitors, no magazines to read and occasionally won't even turn the TV on. We hardly have a decent conversation and she shows no care in what I'm doing etc, all it feels like is her asking me to get this and that. She's refusing to take anti-sickness medication as she claims they make her sick so is constantly vomiting. She doesn't like the laxative drinks so hardly takes them resulting in constant constipation and pain. We have three carers a day but they are hit and miss and I spend my life emptying the commode and sick bucket. All the professionals involved have tried to encourage her to take her medication and try moving more but she outright refuses. Therefore they all seem to have given up on her and their visits seem shorter and shorter. I can't remember the last time I heard from the Macmillan nurse and to be fair she's been lessw than helpful when I have spoken to her. The only response I ever get is that she needs to take her medication and sit out more - I know but she refueses and I can't make her. Therefore my mum spends most of the evenings screaming in pain and vomiting. The screams just penetrate your head and just haunt me all day. I initially took a very caring approach believing she only had days / weeks to live and wanting to spend quality time with her. However now the months are passing I really can't cope with it anymore especially as I've returned to work full time. My employer has been great and allowed flexi-time etc which has been a lifesaver. My sister lives too far away. Although she comes down occasionally and is great with practical stuff like cleaning she really doesn't understand as she doesn't live with it constantly and doesn't hear the screaming in the evenings. My mum is refusing to go into respite care and they can't make her as she has all her faculties and knows what she is doing although it is clear she doesn't care what she is doing. My GP has expressed concern for my wellbeing and suggested medication but I really can't see how that is going to help although I accept I will have to try. I think my mum needs the anti-dpressants - not me! However that's another things she's refusing. I've recently tried the more firm approach telling my mum I can't cope anymore and she needs to help herself. She's done nothing but just tells me to stop going on as she's crying. I suggested I should move out if its the only way to show we're not coping to which she just responded 'good'. Part of me wants to just to make a point but I know she's have a fall or a diabetic hypo (these have become frequent since the started cancer meds). and I can't live with myself knowing that she's going to die or be in severe pain just because I'm not around when I could be. I accept she's going to die but I can't believe with the current system and lack of joined up working with professionals that she can die at home with any dignity. My lasting memories of my mum are going to be of her screaming and arguing with her over the need for her to take medication. I hate to think like this but I thought we only had days and weeks but now the months are passing I'm worried about ho long this is going to last for. I just feel trapped.
