I need advice.. so burnt out and exhausted

Wow! what a post!! This has really hit home with me!. My lovely husband of almost 37 years is going through bowel cancer treatment. This time last year we were getting our lives back together after a successful operation last January (2022) to remove his tumour. I say successful but in fact it didn't turn out that way in the end because 5 months later is was back even though I asked about post chemotherapy which they said was not necessary but for which I have always felt very bitter about. I asked if this would be needed as a precaution incase any cells were still present that may have been hard to detect and they said not unless it's not necessary it wouldn't be done but there I come on here and read posts about people get adjuvant chemotherapy or `mop up` chemotherapy in case of stray cells that can't be detected but just because as far as they were concerned they got it all and `margins` etc were clear so it was not needed but then we found out it was. 

I come on here regularly usually the Bowel Cancer Forum but as I'm my husband's carer sometimes my post get moved here. He started chemo again last August and lasted until his 4th cycle after which he became quite ill so it was stopped for a while. Then in October/November they decided to start him on a new chemo regime but unfortunately he only got to do one session of that before blood tests for his next session showed  dehydration and low kidney function and he had to be hospitalised. It was found out that the chemo had damaged his kidneys and he had to have urinary catheter fitted. Then in January this year he became quite ill with what we now know was sepsis. He got up one day and began shivering violently and his blood pressure dropped rapidly so I phoned a cancer nurse and she in turn arranged for an ambulance to come out and get him to hospital right away and it was when the paramedics came out sepsis was mentioned and he was given fluids and blue lighted to A & E. Once there his blood pressure etc was monitored and he was later transferred up to the High Dependency Unit. They did wonders and he got home 10 days later. Last month he was back in again with the same thing but on his notes it said `failed discharge` which meant he was discharged too soon previously. He is now home and recovering but his sleep patterns, mobility and mood have all taken a bit of knock. We have help coming in via physiotherapists and district nurses though and aids have been given around the house via grabrails etc. 

I can relate to what has been said in that relationships become very strained during all this. I have very strong feelings of guilt because I feel that my husband could do more around the house than he says he can although he says he can't. He won't even get up off the sofa to make a cup of tea. Lying in bed until mid-day seems to be the norm lately he lies and looks at his phone or kindle then gets up and just makes his way into the living room and sits watching TV. He doesn't even physically go to the bathroom anymore because he had a nephrostomy procedure for his kidneys so urine collects in his urine bags on his back and he has a catheter bag for collecting urine and a stoma bag for his poo. He just sits on the sofa and changes his stoma bag which I have asked him to go to the bathroom to do but he says he can't get up and it's too much bother with the zimmer frame. His food portions have gone down too obviously but sometimes he still thinks he can eat the way he used to and if we get a takeaway he leaves half of it now- a complete waste of money. If I were to give him what he asks for now about 5 years ago there would have been a `riot` and I would have got `Is that it`?? now its `I don't want a lot`. Some days he just won't eat at all. He can't manage the urine bags on his back because they are in an awkward position so needs me to empty them and sometimes, I can't always get it right and the valve that opens and closes the bag for the urine to pass through and at times when I think it is closed it is open and pee goes everywhere. He broke down last week and said -in his words he's fed up with lying in piss and smelling piss. I get very nervous sometimes changing these bags and he constantly tells me to make sure the valves are open/closed. He can change his catheter himself this is about all he does for himself. He is trying with his mobility though and he does his exercises and tries getting up and downstairs we live in a main door flat with stairs leading up to the flat. 

To look at him lying in bed you would think nothing was wrong with him. He goes to bed around 11 at night and I give him sometime to get settled before I go in and hope he is asleep but when I go in he is lying scrolling through his phone whereas before he would be asleep. I know the sepsis has done this to him we have had information sent through which details the after effects of sepsis and it details that mobility can be affected as well as sleep patterns and psychologically i.e. mood swings etc. I just feel mentally exhausted and for that I feel guilty because I feel I am not physically doing anything to cause exhaustion so why should I be. I can't read his mind and know what is going on in his head and yes, I have had the `you don't know what it's like` line as well and I agree being the carer can be just as bad watching the person you love go through it all. He sometimes asks me if this is his past catching up with him. He was a very heavy drinker at one time- long before he met me but gave it up almost overnight when  away a weekend one of his frined found him lying on the bed in his B & B in the same position for 2 days and actually thought he was dead. His love of food has never always been healthy either, before he retired he pratically worked 24/7 and as he was travelling a lot ( he built advertising boards all over Scotland and the north of England) he more or less lived off takeaways and these would be consumed all times of the day and night. His weight was also an issue and once he retired he was diagnosed with Type 2 Diabetes and just before that due to overwork he tried to commit suicide. He was always the `willing horse` and never knew how to say `no` to his boss I think for fear of losing his job and his boss played on that. So he keeps wondering if this is his past catching up on him. 

Our son and his partner recently lost their unborn baby so this knocked him as well. She was only 8 weeks gone and went for a scan and was told they could not detect the baby's heartbeat. So this adds to our troubles. I can relate very much to what was being said bobbythevan. 

Vicky xx

Cooking is another thing. He will try and tell me how to make things he likes. Other and come into the kitchen and do it himself he will sit and shout `instructions`. His excuse for that is, that he can't stand for long periods but he can sit down and make up a meal. I really don't know the last time he made me a cup of tea and we used to take it in turns to do that and it seems to be down to me all the time now. I know it sounds terrible but sometimes I just wonder if he `puts it on` that he can't do things but actually could. He said to me if he could do things he wants to do he would but I just have his word for that. 

It is isolating and brain numbing at times. I hear you, I was a carer for my Mum who had Alzheimer's and bowel cancer. She passed 4 yrs ago. He sounds angry at what has happened to him, he is so needy which makes him demanding. With my Mum I had to be like her parent in a way which she didn't like. I care part time for my son who is Autistic and Epileptic, he  is 26 yrs old now. Work is a good distraction but  it can still wear you out. I worked part time until I got to 60yrs and my Mother became a danger to herself. Hug for you, even if it's virtual it's still good to be heard. X

Hello my lovley I,ve not been on the site for a bit ,life got in the way a bit as it so often does, but tonight found myself having a quiet moment in between eater eggs & then found myself here, & I’ve just read yours Vicky & other wonderful peeps accounts of what they’re going through & how your all feeling emotionally , this guilt thing we are constantly putting ourselves through is like a sword dangling over us waiting to drop from a huge height the very second we allow ourselves to have a negative emotion or thought , I too have had the dreaded “ is he putting some of  this on ? “ & you know what fellow carers YES I honestly think that sometimes he blooming well does! There ! I’ve said it & now I’m waiting for the sword to drop & fill me with bone numbing mind blowing ,stomach churning ….. GUILT! & then I’ll feel terrible & then go overboard trying to prove I’m the perfect soulmate who’s blessed with endless patience & bugger myself up fetching & carrying & giving in more than I really ought to,& all the time feeling like an utter cow for allowing such a negative thought to have an airing, & I  know there are beautiful wonderful people out there in this situation caring for loved ones who perhaps do not have this treacherous thought or feeling but for those of us out there who do have these feelings of frustration that can manifest itself into a negative vibe that occasionally overwhelms us & slips unbidden into our minds , I say this to you , your only human your not a saint, have the thought, deal with the guilt , then get back to doing what you do best,which is  loving & caring & trying very very hard to fight for & understand the situation that’s affecting the person you love, because let’s face it you would definitely not stay around to be shouted at by somebody you don’t like .I know with my husband I have to be very firm about doing things for him my way & not allow him to bully or rush me into doings that will then lead to me doing it wrong , it’s difficult & I have to really dig my heels in , but saves a row later on ,so, chin up vicky & anyone else taking the time to read this , your doing GREAT maybe not perfect ( none of us are ) but BRILLIANTLY all the same xxx

Don't feel guilty hun, in that moment or 10 that's your truth. You have needs too that are overlooked as a carer. Too much taken for granted sometime. I was exhausted yesterday after I took my son back to his house. Feeling better today, don't be guilt tripped. Maybe be honest and just say you need 10 mins to reboot or whatever u call it. Sometimes my hubby is so self centered or so it feels I have to react. He has so many excuses, public soon syndrome or I am nearly 74 you know. He hates it when I say well at least you haven't got cancer. Ha ha ha. It is funny sometimes looking back at it. Many humour if we can find our funny bone might help. Timing is key of course. 

Public school syndrome should say .

Just found this thread after recently joining the group. Thank you for that last paragraph, I needed to hear that today

Loved that Sabrina thankyou xx

Deep breaths darling deep breaths  & as Sabrina says take 10 mins time out for yourself & now youve found this link use it , put your thoughts out there ,it won’t change the situation your in but it really reallly helps to know your not alone.take care we,re all behind you x

I try to meditate sometime, listen to peaceful relaxing music. Turn the mind off and find that quiet place inside. We all have it but find it hard to tune in with all the busyness of life. Connect to your higher self ir whatever is right for you.