taking responsibilty to get me where I want to be

peb

Just sending 🤗.  A horrible position to be in

efes_shareholder

peb said:

Just sending 🤗.  A horrible position to be in

thanks peb
hugs gratefully recieved 
I guess we never know how strong we are until we are put to the test.

efes_shareholder

I'm worn out , i'm not gonna lie - just drained and overwhelmed and feeling very much left to it on all counts.
I'm not complaining as mum needs me to be doing the things I am doing but I'm not a doctor , a carer , a dietician or a cancer specialist and right now it feels like thats expected of me.
I'm combining mums needs with working from home , yesterday she spent the day uncomfortable as she hadn't managed to emptied her bowels for a few days ( common side effect to morphine) , yesterday we ramped up the laxative as nothing was working and today we have the opposite affect.
I'm downstairs working with her down here resting so that I am here if she needs anything but it doesn't give me the oppurtunity to voice my concern or displeasure with the lack of care from other sectors.
Sister didnt come in yesterday  , she is coming after work today and then wont come tomorrow due to work - I'm feeling bad for feeling envious that she gets to escape , NM said to me perhaps my sister just isnt coping well which is understandable but I have no choice , I have to cope !!!! 
family are calling and want to visit which i also get , but i can't tell them when they can as it depends on the day mum is having and I also can't cope at the moment if they visit during my working day , its just too much.
Theres a huge reluctance to put a care plan in place until after the scan which we had the blood tests for today , there seems to be a reluctance to do the scan too so its catch 22 
right now I don't care if the care will be means tested , just get something in place as we are not professionals 

efes_shareholder

my stomach is also playing up , i've had some clear blood tests and waiting on my stool test to come back as well as an ultrasound to be done on my stomach
today its all in the back , its not going away - it could be reflective of everything thats going on but i wish it would just do one as its really not helping

Kitten868

Oh lovely. It all seems to be changing for you all day by day. You are doing amazingly. You are fantastic. 
I don't know why they have to make things more difficult just because it comes down to who has to pay. I don't think the application for funding will go any quicker.
Would it come to hospital or would she go to a hospice instead? Maybe scout for which ones would work for you all. I think you do get a choice. I'm not being morbid I'm just trying to be ahead of the curveball for you. When we had to start applying for them it just landed in our laps. 
I think you've made the right call on getting your kids to come visit. And definitely the right call on money. You'll can pull that back around later. 
I hope you start getting some help for your issues soon too. Or they ease. 
You are brilliant. You need help. This isn't all on you. Take all the breaks and space you need to. Maybe don't ask sis and tell? And as you say once mum is settled go out. Xxx

Dorisd

Delurking to say you are in a position none of would want to find ourselves in, but I’m sure I we were, we would want to deal with it as you have. You have showed great strength, compassion and grace.

efes_shareholder

Kitten868 said:

Oh lovely. It all seems to be changing for you all day by day. You are doing amazingly. You are fantastic. 
I don't know why they have to make things more difficult just because it comes down to who has to pay. I don't think the application for funding will go any quicker.
Would it come to hospital or would she go to a hospice instead? Maybe scout for which ones would work for you all. I think you do get a choice. I'm not being morbid I'm just trying to be ahead of the curveball for you. When we had to start applying for them it just landed in our laps. 
I think you've made the right call on getting your kids to come visit. And definitely the right call on money. You'll can pull that back around later. 
I hope you start getting some help for your issues soon too. Or they ease. 
You are brilliant. You need help. This isn't all on you. Take all the breaks and space you need to. Maybe don't ask sis and tell? And as you say once mum is settled go out. Xxx

Thanks Kitten , your posts do give me encouragement
I thought I'd made it clear on saturday to her that I needed to get out - to be honest the next few days I don't really have anywhere else I can be with NM working evenings all week but I just feel that I'm allowing her to have her chill out times and when she facilitates herself to give me the same it needs to be for more then a few hours , I don't feel like I've spent more then 12 hours away from home since the start December................she does have a 12 year old so that does present problems but she also has two daughter in their 20's who should be able to help with him as they do when she wants to see her boyfriend.
my confusion is , surely if something is not curable then it is terminal ? why does it need a scan to acheive that prognosis ?? 
If it was't for the covid situation I'd have had mum in hospital long before the diagnosis , I don't know if we will end up there , doing everything at home or in some kind of hospice - from a personal point of view a hospice would be my preference but ultimately that has to be mums choice.

lucielle

Lots of difficult choices to be made but you need to stick yo your guns re sister.  Can you set up a rota?
L

efes_shareholder

Dorisd said:

Delurking to say you are in a position none of would want to find ourselves in, but I’m sure I we were, we would want to deal with it as you have. You have showed great strength, compassion and grace.

Thank you , i'm just doing the best I can , I need to sleep more but by the time i get mum settled of an evening I need some chill out time of my own , so i need to learn to wind down as soon as so that I can get as much sleep as possible.
It certainly puts life in to perspective , thank you for delurking and taking the time to post x

Kitten868

Well then what about NMs next two days off your sister is doing it all for 48 hours? Would that work? I'm guessing her daughters aren't thoughtful or patient enough to watch your mum. And your kids are too far away.

And as you say they need to determine how terminal it is. Like that's something that's measurable. Could the macmillan team take on some of the battle for you. Advocate she needs her plan in place. Xxxx