What's normal?

Morning Bryony

I am no expert, the mind has complex ways of dealing with the ultimate of stress, emotional pain etc and who is to say what is normal? Just your way of processing what is happening in your life. 
I currently don’t have those thoughts but I am not going to say they won’t happen to me. When you said you wanted him to hurry up and die, maybe it was your way of saying I love you, and I want your suffering to end. 
Have you been to see your doctor and talked about any struggles ? They would be able to help, there is also counselling where they could help you to understand your feelings.

Hope your mind calms a bit for you soon and remember its processing the impossible 

Nic

Hi Bryony.

I know exactly how you feel. You are not a horrible person..you are just being practical & facing the inevitable.  My hubby passed away 3 months after being diagnosed with Oesophageal cancer. One minute I was sobbing my heart out cos I didnt want him to leave me the next I was wishing it was all over. When he was 1st diagnosed we had hope,  but once we were told he could only have palliative chemo & it would probably make him very ill..even if he could cope with it, It would only give him a few extra months . He decided against it & it was almost as if he gave up. As soon as he was told it was terminal.I Went to our local undertakers & told them that hubby didnt have long & discussed what he wanted for his funeral & got an estimate of the price.( the undertakers are personal friends so it made it easier) They were quite shocked to hear that hubby was so ill As we had seen them Just a few weeks earlier. We then went on a frenzy of going through paperwork that we had kept over the years & did an awful lot of shredding!!! He said things like you dont need to buy me anything for Christmas as I wont be here & you will have to buy your own presents from now on. Thats what really upset me but I think it was just his way of coping with things. He had a very dry sense of humour. It was true He wasn't here for Christmas he died on 26th November & his funeral was on 17th December. I went from working to being a full time carer then nothing all in the space of a few weeks. I am returning to work in a few weeks time& in the meantime I am getting the jobs done on the house we had been putting off since covid.

You won't believe it but that is exactly our story! I think I just want it all over, his pain, his very unusual sharpness and grumpiness, he's like a different man. I know it's the cancer talking and I am very calm and patient. I am also very organised, methodical and industrious which is probably not helping my thoughts! Thank you for sharing x and I am so sorry for your loss xx

Thank you for caring. I'm OK, I get the carer blues in the morning. Then process throughout the day. Then I'm thankful for another day with him x

My hubby was also a right grump.. it felt like I couldn't do right for doing wrong. I was constantly in tears with him having a go at me..telling me I was doing things wrong when I Knew I wasnt.Nothing I did was good enoughI'm a very organised person. When he was being cared for at home I even made charts so I knew exactly what meds i'd given him, the doses & times. I told him I didnt sign up for this & i'd had enough of his behaviour. He apologised then I felt awful cos I know he was worrying about what the future held for him.His last few weeks were awful in hospital. I wouldn't have put my worst enemy in there...but thats another story!!.We eventually got a bed in our local hospice & he died less than 2 days later. I swear he held on till he got in there & he felt safe & was finally comfortable & was able to let go. 

I'm so grateful for your replies. I haven't lost it with him, yet, as I know he doesn't mean it. Where at the stage where he goes from bed to sofa to toilet. He can shower with a stool but I shave him. I took him for a drive Monday and he's still exhausted from it. His appetite decreased last week. His urine is very brown from the liver failing. I wish I knew how much time we have so I can just enjoy sitting and holding his hand, I'm like a jack in the box doing food, teas, puddings, plumping cushions and so on. Anyway, thanks so much for replying x

Hubby lost so much weight his skin was actually hanging off the top of his legs & bum.When he was in hospital the last few weeks he was on an air mattress & even then he was uncomfortable as he had no meat on him .I did 99% of his care in there. I had to help him to the loo & back as he was so weak. When I went home late at night he would manage to get to the loo on his own but couldn't manage the trip back to bed. On a few occasions he pressed the help buzzer & no one came to help him & he collapsed on the bathroom floor trying to get back to bed.. The nurses denied this but I know for a fact he wouldn't  tell lies. My days were spent trying to get his pillows right as he had to be propped up..he couldn't lie flat due to pain. I just sat next to his bed reading whilst he dozed. I wanted to stay overnight but he wouldn't let me. He sent me home to rest but all the time I was worrying what was happening whilst I wasn't there.Just a few days before we got the hospice bed he wanted a shave, I helped him into the bathroom & got him a chair with a pillow to sit on..I took him ages to have his shave as he had to keep stopping to rest. He was determined to finish it off. He hadn't had a shower for weeks as he had a syringe driver line into the side of his stomach & couldn't get it wet so I used to give him a wipe down with a damp soapy flannel. He kept saying to me 'do I smell?' The hca's did give him a bed bath a couple of times & I had to leave the room as they were so rough with him & I couldn't bear seeing him in pain whilst they were doing it. More than once he said to myself & the drs he wished he could die as it was no life...I would get so upset when he said this but during his last few days when he said it, I told him I understood how he felt as I could see how much pain he was in. It didnt help that they kept letting the morphine in the driver run out & even though he could have extra painkillers he wasn't getting them. On one occasion I asked for extra @ 10:30am & it was after 12.00 when he finally got them..all this time he was in agony.

Hi Bryony, this is a little bit like what happened to my husband. We desperately hoped the chemo ( for a rare sarcoma)  would buy him more time but sadly 2 rounds did absolutely nothing.

I think its normal to have all those feeling as you try to process what is happening in your lives. I did sort of start thinking about the future, for example I opted not to give up work because I felt it would really help me to have a job to return to. Instead I was signed off sick as I took on the role of full time carer. My husband died in October and I have just started a phased return to work. 

I had to put off a knee replacement because I was his carer, but yes you can and should look after your own health. Im not ready yet to go for my knee because Im on my own and am not mentally prepared. 

Are you able to talk to your husband about funeral wishe? We did in the end but he didnt really want to, he used to say " I dont care what you do, Ill be dead". He did write down all the accounts and passwords. Pension informations, policies etc so I could find it all.

Do you have any support, family or friends or hospice? 

Just remember you are not a cow, you are dealing with an impossibly challenging experience and probably anticipatory grief. 

Keep talking, it helps

That sounds like a rough time for both of you. Getting good medical care is pot luck. We've been lucky that way. Everyone has been excellent. Although now we only see Weldmar once a week, who are fab. But until he needs a driver we'll not see anyone, there's no point. I have the district nurses hot line and loads of meds here. I am hoping to care for him at home until the end, fingers crossed. I have experience in meds and caring so I don't put up with any crap. And someone being too rough is not acceptable. I used to give people ski mittens and say now move them gently, they soon learned. See, evil streak. Anyway, making soup, so off I go to p.m routine xx

Ps I have family support and we've always spoken about funerals etc. But somethings are left better inside when people are close to you x