taking responsibilty to get me where I want to be

efes_shareholder

Todays been busy off sorts
Woke up at 5
By 7 mum had all her medication and her breakfast which she can't have until an hour after medicine , bed was stripped , washing was on , washing up done and my reports at work 
Sounds alot but there is always something needs doing in this house
Carer came bout  9 , sister turned up around 10.30.
Today I had a bit of a chance to observe as I was ahead at work , aside from pegging washing out which id already put in machine and washing up mums lunch plates she sat on mums bed and drank coffee ,  every time I went downstairs to get water she was watching TV with mum ....... maybe I expect too much I dont know 
No sooner had sister left at 11.30  then the cavalry arrived , 1 uncle and 2 auntd ...... I made them tea and had a chat for 10 minutes and then excused myself to come back to work ...... they were here about an hour and then called me down as they said mum was feeling dizzy and they were concerned but I recognised she was worn out from visitors and as much as she appreciated them coming she was now worn out so mum had a nap and I cracked on with work 
This evening I needed nail varnish . Mum requested some personal toiletries so I went to sainsburys to get them and also ended up spending 1e on a brief case style record player to put away for my son at Xmas, my daughter mentioned a few weeks ago that he said he wanted one and it was reduced from 50 so I thought take a punt and if he's not that bothered at Xmas it was 14 which is a few chocs and a lynx set
Got home , usual carer was here and both her and mum joked that when I'm off duty tomorrow I should load mum up with prune juice and let my sister see what I deal with , its so tempting !! 

Anyway for one up so early im rambling , mum asked me tonight if I would rather she wasn't here ........ that cut deep , I said where else are you gonna be and she said " heaven " I wouldn't rather that at all ...... if had a rather I would rather we hadnt been dealt cancer
I said you don't ask my  sibling these questions and she said " they don't do what you do " , it was an awkward conversation one I didnt like , she spoke about going in to nursing homes etc so obviously she is feeling the burden I'm carrying , she said when it's too much I will go so I just reassured her that we aren't at that stage yet and ill do all I can to keep her home
I explained ill get tired whether I'm looking after you or not which I will 
Told her as long as my sibling gives the respite ill be fine which I will ..... however she could give more 

Buffythedebtslayer

Oh Efes XX 

I made my own peace with myself about the way my sister behaves and is treated. I don't like dredging it up now, but those awkward conversations. I do hate them. They don't happen or more accurately I minimise what I do  and what is happening so no one feels bad. I hate myself for doing that. But in the moment.......blah blah blah. 

It is really the worst thing, the worst situation. You are both being incredible. 

Sending you love. 

efes_shareholder

Buffythedebtslayer said:

Oh Efes XX 

I made my own peace with myself about the way my sister behaves and is treated. I don't like dredging it up now, but those awkward conversations. I do hate them. They don't happen or more accurately I minimise what I do  and what is happening so no one feels bad. I hate myself for doing that. But in the moment.......blah blah blah. 

It is really the worst thing, the worst situation. You are both being incredible. 

Sending you love. 

I’ve given up having expectations 
it’s one less thing to get annoyed about 

efes_shareholder

well today i feel terrible , have the period from hell which i THINK is the cause but also feel a bit hot ( temp border line to a slight fever) 

Had a nice weekend , went to a friends garden party on sat , it was a 80 mile journey which took forever and put us out of sync , stayed in prem inn on company account which im hoping the guy who does the bookings forgets to put through but i think thats wishful thinking. It was a lovely day but really did drink too much. 
Also a little bit concerned as one of our friends had tested positive for covid but her hubbie had tested negative so in line with the new rules he doesn't need to isolate and was at the party .............seems there was a group chat I wasn't part of and everyone was made aware in that but  the info didn't get to me , in fact it was only an hour or so in when i noticed i hadn't seen her that I was made aware. Its made me slightly anxious , because of my situation im pretty careful with body contact etc , but I feel unwell today but i've tested and I'm fine so I think I'm just going to test every other day and hope that he is absolutely ok and doesn't come out with it in the next few days. If I had known the situation then I possibly wouldn't have gone at the weekend as I would still have seen him as a risk but I guess we are all at risk every day so I shouldnt think too much about it and if i had known maybe I wouldnt have had such a nice time and enjoyed seeing some friends which I haven't seen for a while.

When I left on saturday mum wasn't great , I got back about 1 yesterday and then my sister came back for 7 , she seemed better then saturday but looks constantly confused and not quite with it , my sister went to work early this morning so when shes on an early shift generally I come back around 10ish as my sis leaves at 8 and the carer comes in around 9 so shes not by herself too long but this morning she had the carer calling me , saying she wasn't sure where I was or if I was coming etc , I'm sure my sister would have told her when she left at 8 that I would be back but information doesn't seem to be sticking
Had a chat with my sister before I left last night , we both agreed it is becoming more challenging to look after her , I did also manage to grab an extra night respite this week , just asked her basically and said I was becoming worn out and any night this week would be great, particulary welcome now I have the period from hell and just want a hot soak in the bath.

Didn't spend any money this weekend , I sorted the hotel ( NM offered to contribute but its my friendship group so I felt its my duty to take care) and we did take my car but he covered the cost of everything else. My petrol is virtually defunct now but I should get through to pay day with a £15 top up,

efes_shareholder

so after stopping myself from falling asleep at around 6.30 last night I was still tossing and turning gone midnight , took 3 nytols , the old grey matter just wouldn't switch off.
its going to be a long day. 

Had a call from Mac nurse yesterday , tried to tell her that I thought mum was declining and explained some of what was happening , she just brushed past it and moved on to chatting with mum about the confusion shes experiencing , said her recent bloods were fine and she would call at the end of the week. They honestly dont seem to care about the impact of cancer on the carers , I know mum is the patient but it does concern me that this will still be the case when things really go down hill.

No spends yesterday , again just aswell as there isnt really anything to spend , 7 days and counting until payday.
I feel like I need to relook at budgets and commitments and the other C word.
Most of what kept me awake last night was surrounding what am i going to do at xmas.
Don't expect mum to be here , yet shes defied all odds so far. Last xmas was pretty rubbish due to lockdown and I made the kids promise we got this year , its looks likely I won't have my home as I was expecting , NM's flat is too small .................maybe I shouldn't worry about this yet , it all just sucks.
NM wants us to go away in nov to scotland for a friends special b'day ,hes paying so dont need to worry about that but  again another reminder of how difficult it is to organise things ..............need to speak to sister , need a crystal ball to work out where we will be then. 
Considering dropping my c/card direct debit from 300 to 100 in the lead up to xmas ,  just to take the pressure off ,its on interest free until April but I wanted it gone by Dec which it will be if I don't tinker with it , however if I drop it down and reinstate the 300 payment after xmas it will be gone by april when the 0% runs out.

efes_shareholder

better nights sleep last night , maybe the two gins helped.

Didn't end up a NSD ,have a friends b'day at weekend so needed card and small gift for that and I needed sanitaryware and more nytol ( I'm not sure its even effective anymore) so got my sister to pick up from the chemist when she got mums script
Spoke to her about w/end late november she said just to do it and we would sort it out later , also spoke to her about not knowing how long this situation would continue and that maybe we should both book the same week off of work with the view to having some kind of rota system for days out / breaks. I know I'm running on burn out , she says she feels she is too , although I do most of everything here it must affect her too trying to juggle everything too 
We also asked the district nurse team to refer us to marie curie , although macmill in our area don't do respite care apparantly they do , not sure whether we will get it or what they can do for us but if we don't look to tap in we wont know.

Mums had a wet night , I've gone down to a sopping wet quilt ( and floor ) , looks like it woke her in the night and instead of also taking the wet sheet off shes put it on top of the bed and curled herself up in it so i now have TWO quilts ( we only have two) to get washed and dried on a not particulary sunny day , I asked her why she didnt remove the sheet first and she said she wasn't with it , I do get that but its the moments of not with it that increase the work for everyone as if we can't get them dry then someone will have to go and buy another quilt for tonight.

Been considering finances , September is a month that will potentially go to the wire with the budget , I've got a haircut and colour and also the long awaited weekend away which my sister is covering mum for ( I just know these plans aren't going to be smooth running and there will be a spanner) I'm going to trim back the tesco payment for a month or two , not because I don't want to pay the same or indeed get rid of it but so I'm not tapping in elsewhere if it gets tight. I'm winging it a bit with the budget , my savings have become one big pot and I need to look at organising that a bit better and maybe seperating things off. 

efes_shareholder

good morning

back to feeling worn out , spent yesterday like a washer women , mum had wet in the night so all bed clothes needed washing and then because she was cold she wrapped herself in the spare quilt but laid back on to the wet bed meaning 2 quilts had to be washed and hopefully dried on a very cloudy day which was challenging ..................I asked why she hadnt taken the wet sheet of the bed , her reply I wasn't with it , was with it enough to get out of wet clothes , take wet quilt off of bed and turn heating on but not to take the wet sheet off.................
sister popped in for a couple of hours ( her day off from work) , managed to get all bedding dry , cooked mums dinner , washed up etc etc , NM popped in after work , that was around the time mum usually settles down for bed and as her bed is in the lounge and I don't want to show him the upstairs of this house its difficult to have any privacy and we can't even just watch the TV so I remembered that my local pub does 2 cocktails for £10 on weekdays and suggested we went there once mum was asleep and settled.
Had a couple of very nice pornstar martinis and a little chat , £10 spend there but sometimes its nice just to get out of the house and came back after an hour..........................TO ANOTHER MASSACRE. 
knew the smell as soon as I opened the front door , had to fetch the marigolds , strip the bed , strip wash mum and clean the floors again before getting everything straight again , flooded the house with air freshner and hoped it was only the one episode which is was but once again this morning the bed is sodden so I have already had the machine on twice and hung out the washing from last night.
Overslept slightly this morning so stealing time from work to get the house things done , to wash up , to do mums breakfast , to sort her clothes for when the carer comes , to do her morning medication , to put washing on not to mention actually feed and water myself. I'm by myself today as sibling is at work but I do knock off and go to NM's after work which just is never for long enough.
I think I overslept because I sat up feeling sorry for myself , my sister was telling me yesterday how worn out she is with things and im thinking to myself " you have no idea" you get to walk in out that front door as and when you choose , your not prisoner through no choice of your own unable to escape unless someone comes along and gives you a parole card , which might be a 12 hour escape or it may be 24 but no more than that. 
It feels incredibly selfish complaining bout not having much of a life when my mum is in the process of hers ending , when I try and tell people how im feeling it comes across as I want this done , in a way yes as there is only one destination in this journey but its not what I want , what I'd like is some kind of respite , for people trained in their job to do this stuff to take over for a bit , its not going to happen I don't think , theres just very little support out there. In fact I can't remember the last time anyone asked how I was doing , its true carers are the forgotten ones in these circumstances 

Anyway , if I hadn't had to come home and sort that mess out last night would have been just the ticket and a nice little change of scenery , feels like a bit of a waste of £10 

efes_shareholder

sorry about last post , I sound like a right moany myrtle , there is a lot to be thankful for but I guess it doesn't always feel like it.

Flights to scotland later in the year have been booked , NM is paying and we used remainder of EJ vouchers so although its not technically a saving as its money we have already spent , it feels like a little one. Had a right old rant at EJ on the phone as the website would not take the voucher and the operator told me because it was the balance of a voucher it could only be used for extra's and starting spouting terms and conditions , years of working in customer services I can be the worse complaint ever so after I tied herself up in knots with her lack of accuracy in the info she was giving ,its actually only one voucher per booking ......................doesn't seem like the £20 thank you voucher is much of a thank you then , more a carrot to dangle to ensure you carry on travelling with the airline. 
Light bulb moment and me and NM are on seperate bookings , its a 40 minute flight so really not too worried about sitting together etc and it meant we could use the whole £70 of vouchers across both our flights.

Humdinger1

Efes just checking in to say how well you're doing though you don't see it right now.  Your attitude is the right one: unless a cure or huge improvement is possible, the current state of affairs isn't helping anyone inc your mum.  Sending you gentle hugs love Humdinger x

CRANKY40

You don't sound like you're moaning at all. Your life is hard just now. Your sister seems to be feeling it too - just because she's doing less than you doesn't mean that either of you are more able to cope with the situation than the other. On paper, my sister's life is way better than mine but she is the one on anti-depressants, not me. Everybody has a different tipping point. It sounds like you and your sister could do with a trip to the pub together to have a night off and a good heart to heart over the situation rather than just swapping sentry duty which is what you do now. It's not allowing the two of you to have a proper relationship either. 

If your mum is seeming more confused it could be a number of things. She could have an infection - get a urine sample checked just in case. It could be her meds or it could be the cancer spreading. It's possibly worth mentioning it to her doctor or the hospital just so they know where you are up to.