Coping with end of life

Hi LJM2110. So sorry to read that you and your husband are going through this awful journey.

You have come to the right place so well done for reaching out.

My husband had a different cancer, a rare but aggressive sarcoma but received the " end of life" news 3 months before he died.  What made it harder was that he was relatively ok, very tired, on quite a few meds but he took a very sudden turn for the worse and went downhill bit by bit over 6 week. We had been advised this could happen.

I took time of work and we just enjoyed time together, went out when we could, talked, cried, told each other how much we loved each other and I grew into the role of full time carer, sleeping on the sofa. We got the finances in order, setting up joint accounts and getting passwords and details of his pension etc.

The hospice were fantastic as were our district nurses. Do you have one? I was referred for a carer assessment but it was the day after he died. We applied for fast tracked CHC funding a bit too late, it came through the day he died. In the end I was glad I cared for him right until the last 3 days when the hospuce came in so that he could die at home. It was the last thing I could do for him. The hospice supported me as carer and friends rallied to help with shopping, cooking etc. 

If he is over pension age, he would also get fast tracked attendance allowance and Macmillan helped us with that, and getting a blue badge, and any other financial support.

We had his meds here so that if he needed them, they could come out and administer. In the end he went on a syringe driver but he pulled it out. 

Ive probably said more than I needed to. Being a carer is exgausting, physically and mentally, but somehow you do muddle through. But take any help offered to you.

Keep pisting when you are up to it. Talking helps. 

Hi 

Sorry to read about your husband's diagnosis. My husband died 2 weeks ago from Oesophageal  cancer. Our circumstances were very similar to yours.We were told exactly the same about palliative chemo & we decided against it for the same reasons. We were told he probably wouldn't see Christmas .He was only diagnosed at the end of August. He was on a morphine syringe driver virtually from diagnosis & the dose kept getting upped . He was also on oramorph initially every four hours if needed for breakthrough pain & liquid paracetamol 6 hourly . His oramorph then got changed to hourly if needed. This  was fine whilst he was still at home as I charted exactly what meds I had given so I knew when he was due but he ended up in hospital a couple of times & his meds went to pot as they wern't giving top ups when he needed them .His final admittance int hospital on 2nd of Nov was horrendous. They kept letting his morphine driver run out. Even though they knew when it was due to finish as the time is logged. We would ask for his oramorph & would wait upto 2 hrs before he was given it .I was forever chasing it up with the nurses. Thet took him off TXA which is to help with the bleeding as we were told he was bleeding internally from the tumour & could have a massive bleed at any point.The staff knew he was on end of life care but they didnt give a monkeys.. how could they let him be in pain.  It was so upsetting. I reported this to the palliative team numerous times. I wish I could have looked after him at home for longer but I was advised against it cos of the potential for a bleed. I did most of his care whilst he was in hospital. I stayed  with him upto 14 hrs a day. They did offer to put me a bed in his room but hubby told me to go home to rest ( I think he got fed up of looking at me!!)

Be prepared for your husband to start withdrawing from you. Before he was diagnosed we always gave each other hugs & held hands etc but towards the end he wouldn't even let me kiss him. If I tried to hold his hand he would pull his away which was quite hurtful but I know it was his way of preparing me for when he wouldn't be here.

We got a hospice bed 38 hrs before he died & the care there was out of this world. They queried why he had been taken off the txa. Immediately put him back on it.. upped his morphine, put him on medazalam as he was getting quite agitated They kept in popping in to check if he needed oramorph. If we pressed the buzzer they came Immediately (unlike the hospital.)

They were so supportive of myself aswell.

Don't be afraid to ask for any additional help from the palliative team & if you have the option for hospice care , take it, you wont regret it.