Wits end

Hi there,

So sorry to hear about your situation.  Is your Mum having any treatment at all, maybe some palliative care to make her more comfortable?

Although it may sound strange, anger is a common emotion when someone is given such a horrible diagnosis, and unfortunately it is often directed at those who are closest to you.   You honestly sound like you're doing an amazing job, so try and take some comfort from that.  Do remember also to try and take some time for yourself, it is not easy being the main care-giver and you need to look after yourself too, it is a lot to deal with in so many ways.

Regarding Carers allowance - try contacting the Macmillan cancer support line (0800 808 0000) - they might be able to point you in the right direction or offer some help on that front.  Also I think it can be backdated 3 months so keep this in mind too.

You'll also find a lot of support on this forum, there's some lovely people here and everyone will understand that sometimes you might just need to vent or moan, or just feel sad - whatever it is please know that you don't need to feel alone in all this.

It's an entirely selfless thing you're doing - am sending you lots of good wishes and positivity, take care and wish you and your Mum all the best

x

Hello,

My 86 year old father has terminal cancer of the oesophagus, and as of a few weeks ago, large secondary tumours to his groin and torso. So far he's managed since the diagnosis in January with me popping back each month to fill the freezer with home-cooked ready meals and clean, and a friend (to whom I pass the attendance allowance) who kept a beady eye on him. Now though he's deteriorated quite noticeably - and in a move that I don't think either of us is ecstatic about I've moved in for what is probably his last few weeks.

It is really hard! Are you back in your childhood home? I am, 200 miles from my own place, and am working full time from a dining table and trying to adjust.

My father has always been selfish, thoughtless, and ungrateful, and that hasn't changed, so in a weird way at least I'm used to his behaviour. I suspect though from the occasional appreciative grunt that he's actually relieved someone is here to heat up porridge, change his bed, and remind him to take painkillers. Despite his bad natured demeanour I think he's terrified of dying, and I'm trying to cut him some slack.

I think I understand a bit of what you're going through - and I have felt that hopelessness - also it is completely knackering (particularly emotionally) so try not to give yourself a hard time for getting sleep when you can.

My father has refused carers and decided he wants to die at home, so for now I'm taking a lot of deep breaths and only looking at one day at a time. There are a lot of frustrations and angry moments, but I am trying not to feel too bad about those. I'm doing the best I can - and I'm sure you are too.

All best thoughts - G

I wish the best  to you and your Mum.

In May of 2018, a biopsy and analysis resulted in my being told that I have oesophageal cancer and have about six months.  Palliative treatment consisting of 14 radiation sessions and eight chemo treatments (Taxol and Carboplatin) was recommended.  Instead of this palliative approach--  my radiation oncologist suggested considering 28 radiation treatments (Varian TrueBeam).  I completed the 28 radiations plus one addition chemo session.  Chemo and radiation was done concurrently, not serial.

I was able to swallow food again after 10 radiation treatments.

It is now 2 years since completing chemo and rad.

I do have some continuing issues with fatigue and shortness of breath--  but every day is a good day.

My age:  86 (this month).

I know this can be stressful to patient and family.  Every situation is different...I hope your Mum can do as well as me,

Hugs for you, sometimes they don't express their emotions well, you're doing fantastically in a very tough situation. We had similar with b in law who were supporting, it took him having a fall and a spell of respite for him to acknowledge that we needed support as much as he did. Would your mums gp or macmillan be able to visit her and have a talk to see whether she would be open. Or be Frank with her and say that you need help. Another thing we found with the carers in was it allowed us to feel like family instead of carers. Hope you can get some support in place x

Hi 

thank you so much for your replies. I don’t normally live with mum but since March and the start of her illness I’ve locked up my home and moved into care for her. I’m not sure what my original post said now and don’t want to repeat myself. My work has been very good in supporting me throughout this ordeal but that will come to an end soon and I cannot and don’t blame that at all that I might now loose my job. Mum has suggested I give up my home and move in with her now. I love my home. I feel I’ve lost everything I don’t see why I should give up my home as well though I know it would make sense. One day mum will pass and I want to live my life in my home. 

I love my mother to bits. She was always so supportive and caring and I could never wish for better. Now this has completely changed her. She never leaves her bed and always wants more. And I don’t blame her at all and I love caring for her. It’s at night when she won’t rest. I feel I cannot work all day and all night with no sleep I worry I will fall ill and then they would put mum in a hospital and she will die. Two of her best friends died in the last two weeks in hospital. So I want to stay well so I can care for her. The hospice visited Thursday. They are very good. They are happy mum is doing ok. And suggest meds to help her sleep. But they don’t really work. Mum changes at night and becomes confused almost like dementia. I tell her she needs to rest so I can rest or we will both be sick. 

she thinks I’m trying to bring on her death quicker. This hurts a lot when all I do is care and given up so much. But I know it’s not really mum talking. 

I really feel I need a break if only an afternoon. So I’m looking to get a carer to pop in and just be there for mom. 

thanks for all your kindness. I hope situations in your own life have improved. It’s very hard work. Take care xx