New to caring and feeling overwhelmed

Hello

you’re making perfect sense, being a partners carer results in a whirlwind of emotions. There really are no definitive answers. We can only do the very best for our partners, show them how much they are loved and be there for them. I do feel for you, I have been through the same journey, it’s tough, but also rewarding. 

I always was told “you’re doing better than you think” it didn’t feel like it at the time, but I believe it was true, just never believed I was doing enough

I totally get where you’re at…..I’m a mental health nurse, not physical and now I’m a palliative career to my dad and struggling. It might look like I’ve got it under control…but I just watered the greenhouse so I could have a good cry! And I’m so angry that my kind, strong thoroughly decent dad has to suffer this…

Hi Nora

I am with you on the anger.

My husband was diagnosed with inoperable and incurable lung cancer last year, he’s had 10 cycles of chemoimmunotherapy and was recently told that the cancer has spread and no further treatment will help.

We don’t know “how long” he has and I know people mean well but I have to grit my teeth when friends, family etc say “My “???? was told it was terminal and they lived for another 2,3,4,5, ? years”

I know they mean well and I’m genuinely happy for people who’s treatment works and gives them quality time with their loved ones but there’s still the mean, angry bit of me that feels it’s unfair. 
Feel free to rant on this forum because I’ve found it really does help.

Grasan

Totally agree.

My husband has bowel cancer with secondaries on the liver and his treatments have all but stopped working and his tumour is growing. He keeps relatively cheerful even although we don't know how long he has and I always tell people 'we just take one day at a time' but on my low days I get really fed up and selfish as I just wonder how long it's really going to be and how long my life has to be on hold. That sounds horribly callous and there's no way I want to lose him but it's like living in limbo and no real plans can be made for the future. Then he had a bad day yesterday and I got quite nervous about how I'll deal with the real caring when he gets more poorly. I need to get in touch with our local hospice etc. but the whole thing can be quite daunting!

Dear Drizzle

It's like you’ve read my thoughts!!!! The word “limbo” has been/is constantly in my thoughts and words during our 14 months since he was diagnosed. Limbo between treatment and scans, limbo between the times when treatment had to be postponed, limbo when we were told that nothing more can help him and we went from having the cushion of “hotline” and treatment centre staff and oncologist to the couple of weeks till the Macmillan nurse visited which did bring some comfort as she is such an amazing help. 
The uncertainty as you say of not knowing how long we have but being unable to plan things because of the way he changes mentally and physically day to day. But we keep going and try to take each “good day” and do as much as possible and on the “bad days” we watch rubbish television and eat rubbish snacks!!!! Like you I do worry how I’ll cope when he does become more poorly and he worries that he will become a burden (as if!!!). 
Grasan

I completely understand how you feel. What you are feeling is perfectly normal, in my opinion. Trying to make sense and find your way through this while supporting someone else is hard. Try to take it easy on yourself, your feelings are valid and need an outlet. REB forum can help. 

I understand everything you say and feel similar.  My husband is on palliative care and his is angry.  I feel like I am walking on egg-shells and my needs and my identity are completely secondary.  It feels like no-one cares about me and I am the one who is going to lose my husband and is working my butt off to look after him and get it right. I am really scared on the immediate future and what we are going to have to go through.  Everyone says they are there for us, but there does not seem to be any support forthcoming from family and friends apart from wanting to visit which adds even more of a burden and stress on us both.  

Totally understand xx

This is the hardest place I have ever been. It is very scary and lonely xx But I am sure we will find the strength we need xx

It sounds like you're doing really well. My husband isn't as good at telling me how hes feeling as he thinks it'll worry me  - it worries me more having to guess! Nevertheless we keep positive and keep as cheerful as possible! I feel guilty when I occasionally go out but I think it's important for me and it also gives him a bit of space! Keep going - and keep strong!