Hi, I have looked through discussions but I could not find anything, But i am sure there are lots of carers who have felt them same. My partner has Stage 4 cancer and is disabled. She on a Management plan as it can not be cured. We have not been given a time limit and only been told that there are some ladies going to the clinic for ten years with the same condition as my partner.
I do the same things everyday, Get up have a cuppa or two. wait till she gets up make her breakfast then help her shower. She watches tv then goes back to bed for an hour I prepare her lunch and clean the house and do her washing. I make the tea.
She will stop up until 3am sometimes watching rubbish on tv ?
It is the same thing every day the only other thing we do is once a month go to the doctors for a blood test before I take her for her injections at the cancer suite the following day.
I feel terrible because I love her so much but I need to change things. We can't go out because we are shielding ( and will be for some time) I cant take her out in the car because she needs the toilet every half hour.
I just feel so guilty for feeling trapped and it will be like this forever.
I try to get out in the garden and keep it tidy. But its just doing the same things.
She does encourage me to go out but lockdown stopped all that. I do go out for bits of shopping I have a full face air fed professional respirator. But people look at you like you are some kind of idiot for wearing one. They dont understand? I am ex forces and was trained in NBC so I know all the drills.
Just dont know if I can keep doing this forever.
Got to go now she is awake 12pm so to start again ( Sonny and Cher play on the radio)
thanks for listening to my mutterings xx
Hi , Oh my, you're really going through it. My sister is shielding and she won't allow her husband and son even to go out for a drive in the car. I feel for you. Do you have friends you can Skype or Facetime to get a break? I'm wondering if she has had carers and if they might be back soon if they've taken time out so you can have a change. Please don't feel guilty, it would drive anyone nuts with a routine like that. I'd ignore the looks from others if you can; as you say, 'they don't understand'. Could you arrange for her specialist nurse to find out if her sleep regime could be adjusted so she's not sleeping daytime and up in the night? I'd suggest you call the helpline on 0808 808 0000 it's manned every day 8am-8pm and they are experts who might be able to come up with other advice.
Thinking of you,
LoobyLou
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Hi Pabbs,I feel the same.I’m caring for my 85 yr old disabled mother who has dementia ( I’m recovering from bladder cancer surgery) It’s not easy doing the same tasks everyday.We should have had the sitter today so I could get on with other jobs but she cannot come over.I had hoped to have a few minutes in the garden but that will have to wait until later.I’m sure there must be others in the same situation.Just to let you know that you are not alone in feeling like this.Love and best wishes.Jane x
Hi LoobyLou,
We don't have carers or nurses. It's just me. I chat to friends on FB. My partner is very introverted and doesn't even like her family visiting (pre lockdown). Her sleep pattern is still messed up from when she worked from home 4pm till midnight. But that was well over a year ago? Some nights she sleeps ok.
It wasn't so bad when I could make sure she was ok to look after herself for a few hours so I could go out and meet friends. But that is not going to happen in the near future. I just feel trapped sometimes.
Hi Pabbs, I totally understand where you're coming from. My days just meld one into another and another and another. Things were going that way before lockdown. My husband was told he had months left a year ago but his deterioration is very slow. He was diagnosed with aggressive prostate cancer 5 years ago and normal life just seem to stop, instead it became one long round of hospital visits, phone calls, blood tests, injections, chemist trips etc. over and over again Even if we could go out he would find the whole experience worrying and uncomfortable it wouldn't t be any fun for either of us. There are no more treatments just pallative care so it feels like we're just waiting for the end. This sounds awful but sometimes I wish it would end but then I feel so guilty for feeling like that. Everything is about cancer, selfishly I'm sick of it. I don't want to loose my husband, we have known each other for 50 years. I can't express feelings like this anywhere else so I've dumped them here!
Hi elephant222, I must admit that I felt better for just communicating with people in the same boat as us. Take care x
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