Awwww @KG82 BIG hugs
Welcome to the forum. I’m SO glad you’re reaching out, sharing and here with us now.
Oh my gosh, this happening at any age is heartbreaking but you both getting the diagnosis when you were 40yrs young feels cruel. I’m sorry. I’m glad we can be with you in empathy.
Feel free to share, vent as much or as little as you want. You’ll find we’re all very comfortable with giggling with dark humour or receiving big venting sessions - there’s no judgments here, just a lot of concerned folks that are here to support each other.
I helped my Mum care for my Dad from 2015 onwards, taking on more of Dad’s care ‘til he passed in 2020 and we hard pivoted to Mum’s cancer treatment; surgeries, chemo, radiotherapy…and then more treatment when it recurred…now she’s on targeted therapy SO I know what you mean about living scan to scan every 3 months - we do the same, with changes, and treatment changes then different consults etc etc BIG HUGS!
I hear your ‘chief protector’ policy - I know this role description really well. May I offer that with the changes it may be good to revisit the job description about expectations…he may not notice the decline but you’re not going to be able to pre-empt or smooth over every incident - you’re only human!! A wonderful caring human but like all of us, we’re perfectly imperfect…
Please be kind with yourself, as his ‘function’ changes you’ll probably need more help and as best as possible align with him about what that means….because you can’t make things ‘normal’ or how it was before for him.
I’m hoping when you both got his diagnosis you were able to organise the Lasting Powers of Attorney and agree on what’s important - including you’d do your best for him but not to the detriment of your own health and well being…You can still help him get the care he deserves without everything being done by you and only you…
Please feel free to ignore anything I’m saying if it causes more anxiety or angst, I don’t want to upset you more than you already are. I’m just concerned that you’re trying to uphold a ‘normal’ that’s not reality…
If you and your husband have a loving relationship, like it sounds from your message, surely he wouldn’t begrudge you having some time for yourself to reclaim some energy, or connecting with people/friends who care or simply going for a walk?
Do you have people you can connect with, talk to?
FYI Carers UK have online meetups: Online meetups | Carers UK
There’s an everyday chat thread in this forum - join in, we do neighbourly chats to check in with each other: https://forum.carersuk.org/t/roll-call-october-2025/127850?u=victoria_1806
Take care - I hope this helps, if not pls feel free to ignore anything!