I don't know how to keep doing this

Hi SpiritintheSky 

Has your husband had a needs assessment and you a carers assessment - see here. I would hope this would lead to you getting some support so that you can get a break you need before you break too.

I know how close I came to breaking before I first sought some support. An amazing number of friends said "If you need anything" but when I asked if was "ah not today". 

Many carers talk about feeling selfish - I know I had to recognize the importance of looking after myself. We are fortunate that at the moment my wife is in quite good shape - perhaps even better than me but sometimes I think just waking up in the morning was a good result.

<<hugs>.>

Steve

Hello. I could have written your post a little more than a year ago. My husband died in June ‘24. So I think I know how relentless, draining and just plain awful life can feel for you going through all this. In our case he, luckily, spent virtually no time in hospital after the initial terminal diagnosis and his pain was managed magnificently by his palliative care team. 
But (I’m sorry if this sounds insensitive)from my experience, what you’re going through is something separate from your husband’s suffering. 

It’s impossible for others to understand just how exhausting both physically and emotionally, caring for and watching someone dying in front of you is. 
There is no respite. There is no ‘me time’. My husband had bowel cancer. You have perfectly described what it’s like. When it’s you and him for the intimate care, the ileostomy bag changing, the keeping track of the morphine and other pills, dressing, undressing, showering, feeding, taking out, driving.... all with the knowledge that you’re watching the man you have spent your whole adult life with (42 years for us) die and trying to imagine his own mental state and make allowances for it... Definitely not easy. My husband was angry and bitter. And so was I. 

All I can say to you is that you are NOT selfish. You are doing one of the most unselfish and challenging things one human can do for another. Whatever you feel is valid. Go somewhere and scream if you can! But don’t repress or deny what you’re feeling. 
I’ve always kept a journal. But one of the Palliative care nurses, who saw how at the end of my tether I was, said to write it down, that the pain, anger and poison needs to come out - even if you burn it afterwards and never read it again. I did, and it helped. I also wrote on here. If you search my name you’ll see how angry and guilty I felt sometimes!

And finally, after my husband died I was offered counseling from the psychologist attached to the Palliative Care team. I was sceptical, but it was honestly the best thing I could’ve done. If similar exists where you are afterwards, please consider it. I had my last session yesterday, so coming upon your post almost by accident as I don’t visit the forum as often now, is a strange, fateful coincidence. 
Please feel free to message me if it would help. 
Sending you strength and best wishes.

Thank your writing this, I am in the same place and am exhausted both mentally and physically. I get up every day and deal with it hour by hour, some days I cope but today I am a mess. My husband is in hospital atm so I know he is being looked after but to watch him go from a fit and active man to such a frail and ill person who can just about manage to eat tiny amounts is breaking my heart. I honestly don't know how I will drag myself through what is coming but I know I must. Sorry, this is my first time writing on here, it is some small comfort to know I am not alone in this.

I got a lot of support here when I was sure that people would think me selfish and unfeeling. I felt listened to and validated. It made it just a little bit easier and less lonely. All best wishes to you for what you’re coping with x

Thank you for your post ... the angry bitter man part really resonated with me ... despite doing everything all the time (my husband has a spinal cord compression and no control from his chest down) I am still under fire for not doing enough, not caring enough, not loving him enough, not doing anything well enough ... I am running from dawn till dusk meeting all his needs and trying to be present when he wants to talk  and yet its not good enough ... I am sure this is his fear, anger, resentment all coming out at me but its truly crushing me. I am relieved to know I am not the only one in this place. Thank you.

Thank you for this post, currently going through something similar and I’m near breaking point, no one seems to be listening healthcare wise and the patient himself is the worst when trying to accept his new normal and what he can and can’t do, along with his various medications are completely spacing him out to the point where I think he is at risk of injuring himself constantly, so I’m having to take care of him plus our 18 mth old and I’m so pulled in different directions but can’t afford to snap, who do I turn to?!

Hi spiritinthesky. Much of what you say resonates with me. My husband, with a sarcoma now spread to multiple organs, has deteriorated rapidly just in 3 weeks. He also just shuffles with a frame, barely eats and sleeps a lot. I also don't drive but am unable to get him out so he hasn't been out of the house for 4 weeks.  Constant changes in meds is tiresome and I am also sole carer. I was running up and down stairs all day but was persuaded to have a hospital bed and this has been a god send. We had to move a lot of stuff, lovely neighbours with garages helped. I now sleep on the settee which isn't great and our world now mainly exists in our downstairs. Is this something you can consider?

I've had many tears over how exhausting it all it, and you are not selfish or whinging. Have you checked with your local carers organisation and any hospice? In my LA, you can access a few hours of respite where someone will stay with them whilst you have time for yourself. I'm just awaiting my referral but I want to go to choir as my weekly "me' time.

I've also been encouraged to get a carer in, although I would be self fundd, I'm not sure if that's what I really need.

You're not weak, just doing what we all do on here takes tremendous strength, and exhaustion on top of the emotional journey we are on takes its toll. Noone gets it until they've done it.

Please reach out to see what is available in your area, but come back here too, we may not have answers but we have a sense of all being in this togethere, and we all understand.

Thankyou to everone for your responses. We have had a very stressful couple of weeks culminating in a blood transfusion which involved ten hours waiting around, with him in a hospital wheelchair the whole time. Today he had a phone apt with the oncologist, which was basically a waste of time as he was just told to take as much oxycodone as he needs. I believe some consultants fail to see their patients as human beings, my husband is treated by his as just another case, with zero empathy. Thankfully the ophthalmic team we have been dealing with were a lot more caring. 

We are still being left to get on with it most of the time, so that's what we do. We had carers after he came out of hospital but they were less than useful. I'm coping because I have to and because I love him and I want to give him the best life possible while I still have him. This situation shows people in their true colours, the kindness of some is overwhelming and the callous disregard of others makes me realise they were never worth our time. This is an experience most people don't understand, but here I know there are people who truly do get it. Every day I am scared, exhausted, exasperated, worried, lonely. I know he is the same and more. Thankyou for being there, for giving me strength and support and courage. This is the one place where I don't have to pretend. 

OMG..I think we maybe in a special club I'd never heard of...Nothing can prepare you for going from as myself approaching retirement but hoping to stay on maybe part time to as yourself full time carer..my partner has been told this not fixable..at best poss. manageable he 78 in a few days time me dreading Happy Birthday crap..Soz..To put the icing on the cake...def not literally he/we purchased a farm.not huge but small place and now it seems im not only his 24/7 carer but hes assumed i will look after this place...dont know whether to scream or Sob..