Hi @Imacarer1 that rings so true!! We are the Invisible Fifth Emergency Service and most people haven’t a clue.
My husband, Graham, has been in hospital/rehab for six weeks now. Twice one “friend” has told me ‘you must be so rested and relaxed now you don’t have to worry about him - come on out for a night with us, we can go get a nice meal and you can have some drinks’. NOT A CLUE about the fact I am running around rearranging medical appointments and getting one department to talk to another (yeah I know - some hope) and visit him and take in things he needs.
That guy is the one who treated us to a 2 day break about 18 months ago - lovely but it left G exhuasted and Martyn didnt see that when we got home he was knocked out for two days. Tells us ‘see that proved you CAN go away for a break’ as if it was something which needed to be proved. Tells me I need to get a break - FFS WHEN ???
Thats the guy who was informed of G being blue lighted into hospital but didnt contact me for three weeks ‘I thought you must be busy or be relaxing so didnt disturb you’.
As for family - don’t get me started. Sister in law lives 7 miles away and has been in touch twice this year - both times wanting something from me. She visits her friends in the village where we live but doesnt bother to pop in. Her son wont speak to me cos I am supposed to have said something which upset his wife (still no on will say what I allegedly said) and bumped into hi in a shop last week. Asked how I am and I replied ‘exhauted’ How’s Graham? In hospital I replied - ‘yes I know Dad is keeping us informed, but he’s back in Yate now isnt he?’ As if that made everything right. There is a word for people ilke that but the forum-nanny wont let me use it
Only those who are exceptionally acute at spotting moods/exhaustion or have experience of Caring can understand what it is like to be on duty 24/7 and get the reason we do it is because we CARE and LOVE the person. I keep thinking ‘wait til something like this happens to you and then you get the shock of your life as your eyes open to the problems you have to deal with’. There’s the humiliation of a Caree losing control of bladder or bowels and YOU have to clean them up and try to put on a brave face when all you want to do is burst into tears - you still do it though cos you LOVE them. Seeing them deteriorate and lose faculties or memory and get frustrated as they realise their limitations are growing.
I have recently said to Graham that when we stood there taking our vows I could not look him in the eye as they meant so much to me I would have burst into tears - and they mean as much now as they ever did. I CANNOT WALK AWAY. I do joke that I regret not getting a solicitor to check the small print in the vows though and as someone on here said to me "you need to check the microdot over the letter ‘I’ as that’s where the small print is concealed’.
So the answer to your question is YES I - and many others - feel exactly the way you do. Yep “off the cuff” belittling and apparently nasty comments from family and friends abound. They stop talking to you or inviting you out cos you cant always make it or have to cancel at short notice - then they stop bothering at all…
I am sure others will make similar comments as your observations resonate with many Carers. All we can do is keep going - knowing we are doing the best we possibly can - and take satisfaction from that (whilst hoping someone will do the same for us when our time comes)
The great thing is we have this Forum where we can shre, question, give advice and VENT our frustrations.
Hope your day goes well.