taking responsibilty to get me where I want to be

enthusiasticsaver

efes_shareholder said:

enthusiasticsaver said:

Sorry your mum is  having a bad day and hope Macmillan can help. Whilst your mum undoubtedly would rather it was just you or your sister caring for her I would accept any help Macmillan offer you for your own sanity.  It is important you accept the help as working full time whilst being a carer for the majority of the time is tough especially as your mum is able to do less and less for herself.  Sorry your sister still seems to be closing her eyes to the fact that she has an escape for most of the week whereas you have very little escape time. Are you able to at least get out and about for a walk for an hour or so or is your mum not able to be left alone at all? 

Macmillan only offer phone help , marie curie do a night sitting service but so far mum has been against this as its strangers in the house and I do get that 
I can nip out for an hour or so as long as I don't go too far but very often I just want to go to  bed and chill out. 
My sister is just selfish by nature , she has always been very much about herself in everything , not sure if that will ever change unless she does a week in my shoes and I just pop in as and when 

its been a challenging day and she came by after her shift , stating I'm just popping in...........she ended up having to take over for a good hour or so as mums been quite needy today

From experience people do not  usually change.  Your sister sounds like she has already decided how much time she will give to your mum in this difficult time and of course is able to limit it as she does not live with her and goes out to work whereas you are working from home and living there. That may make her selfish (only you know that) or it could be she is just setting her boundaries.  You probably cannot change that . Making it a priority for you to also get some downtime may well help your health problems and your frame of mind even if that means your mum having to accept the night sitting service or other family help other than you or your sister. She is obviously very ill so probably does not see or appreciate how difficult it is for you to balance your work with things you do at home for her but also things for you so you survive all this.  Burning yourself out is in no ones interest. If your sister won't step up then accepting outside help may be the way you get through the next step. What about other members of the family on a shift basis? You are doing well in keeping her at home rather than her going into a hospice but you cannot do it alone. 

efes_shareholder

enthusiasticsaver said:

efes_shareholder said:

enthusiasticsaver said:

Sorry your mum is  having a bad day and hope Macmillan can help. Whilst your mum undoubtedly would rather it was just you or your sister caring for her I would accept any help Macmillan offer you for your own sanity.  It is important you accept the help as working full time whilst being a carer for the majority of the time is tough especially as your mum is able to do less and less for herself.  Sorry your sister still seems to be closing her eyes to the fact that she has an escape for most of the week whereas you have very little escape time. Are you able to at least get out and about for a walk for an hour or so or is your mum not able to be left alone at all? 

Macmillan only offer phone help , marie curie do a night sitting service but so far mum has been against this as its strangers in the house and I do get that 
I can nip out for an hour or so as long as I don't go too far but very often I just want to go to  bed and chill out. 
My sister is just selfish by nature , she has always been very much about herself in everything , not sure if that will ever change unless she does a week in my shoes and I just pop in as and when 

its been a challenging day and she came by after her shift , stating I'm just popping in...........she ended up having to take over for a good hour or so as mums been quite needy today

From experience people do not  usually change.  Your sister sounds like she has already decided how much time she will give to your mum in this difficult time and of course is able to limit it as she does not live with her and goes out to work whereas you are working from home and living there. That may make her selfish (only you know that) or it could be she is just setting her boundaries.  You probably cannot change that . Making it a priority for you to also get some downtime may well help your health problems and your frame of mind even if that means your mum having to accept the night sitting service or other family help other than you or your sister. She is obviously very ill so probably does not see or appreciate how difficult it is for you to balance your work with things you do at home for her but also things for you so you survive all this.  Burning yourself out is in no ones interest. If your sister won't step up then accepting outside help may be the way you get through the next step. What about other members of the family on a shift basis? You are doing well in keeping her at home rather than her going into a hospice but you cannot do it alone. 

I’m hoping she will go to a hospice when she’s end of life but Macmillan have made it clear this is not promised and all depends on space 
my kids all live too far away to help out and the only local family members aren’t in the best of health themselves. 
mum was not keen when my uncle looked after her for 4 hours the other week so I’m not sure what the solution is other then to just suck it up
i get a 3rd evening now which does really help , I guess I just get frustrated that I can’t set my own boundaries , I could but that would only be detrimental to mum and I just want to make her as happy and comfortable as I can. 

I think the night sitting service will be tapped in to if we don’t get a space in the hospice at which point it will probably be the least of mums worries 

efes_shareholder

So Macmillan have suggested we up mums morphine which I fully support , pretty sure the top ups is causing the constipation which we also solved this afternoon - the floodgates opened but at least they opened

Mums slept a lot today , according to her she hasn’t and she would like to go out but can’t even suggest a walk round the block if she’s in bed

social services came today about a ramp , something we didn’t investigate before as without being blunt there seemed little point 
to get a proper one involves grants etc but we can have some door runners which just hook on when we line the wheels up so I’ve said we will give them a try , they take 7 days so I just hope mum is still able to enjoy a short walk by then , it’s also on the to do list to get her out in the chair on Saturday when my sister is around ( although NO idea when she plans to be around ) 

what with social services , Macmillan and mum being a bit more needy ( needing asking 4 times before she would accept anything to eat etc ) it’s felt a challenge to keep on top of work 
I’ve stupidly paid for an online work order with my own debit card , called the supplier to cancel but can’t as it’s been despatched - not sure how it happened , I don’t recall being asked for payment details and didn’t notice until I randomly checked my account.
the supplier suggested I call back tomorrow and tried to get it recalled from the courier - it’s 45 pounds so could have been worse but just created more work for myself
have emailed my accounts team as I’m pretty sure I can claim it back through expenses , just making more work for myself by nit paying full attention or should I say being disturbed every 5 minutes 

Kitten868

I'm so sorry she is having a hard day today (and as a consequence so are you). You know this isn't linear. Having a bad day doesn't mean all her days are going to be like this It is getting steadily worse but today will hopefully be a blip.

I don't think you need to put so much effort into getting her to eat. If she can't manage it thats okay. Are there any drinks that she likes? I think it's supposed to be easier with a straw and keep a damp cloth on hand to wet her mouth. I am sorry I don't have many tips. I totally understand how devastating this is on so many levels.

You know your sister is totally oblivious to the toll and hours on you. She just thinks you're just at home anyway and you just have to be there and occasionally chuck a sandwich their way - like babysitting a teenager. Have you been frank about how hard the relentless toll is taking on you? I know you've been listening to the toll it's taken on her.

Keep your chin up. You're doing so well. xxx

efes_shareholder

Kitten868 said:

I'm so sorry she is having a hard day today (and as a consequence so are you). You know this isn't linear. Having a bad day doesn't mean all her days are going to be like this It is getting steadily worse but today will hopefully be a blip.

I don't think you need to put so much effort into getting her to eat. If she can't manage it thats okay. Are there any drinks that she likes? I think it's supposed to be easier with a straw and keep a damp cloth on hand to wet her mouth. I am sorry I don't have many tips. I totally understand how devastating this is on so many levels.

You know your sister is totally oblivious to the toll and hours on you. She just thinks you're just at home anyway and you just have to be there and occasionally chuck a sandwich their way - like babysitting a teenager. Have you been frank about how hard the relentless toll is taking on you? I know you've been listening to the toll it's taken on her.

Keep your chin up. You're doing so well. xxx

She knew today when she came by , I know she only intended to stay for half the time she did , but needs meant she had to stay longer 
I know the balance will never be even and the rest of the family can rest easy knowing I’m here to take care of anything day and night , I guess sometimes I resent that 
I’ve been downstairs again 3 times this evening to help mum back in to bed after a toilet run , they are probably chilling out watching a film undisturbed drinking a bottle of Chardonnay 
It’s never going to be even but I know she will proclaim to be the saviour when all this is over 

efes_shareholder

Todays work , discomfort - pain in right side and back again, I've started trying to follow low fodmap diet , its tricky but so far successful but i've left the booklet at NM's , today all i've had is a gluten free bread sandwich with corned beef and regular pickle and the pain has been relentless - I'm not convinced what I eat has anything to do with it but I'll try anything now.
I did have milk last night in tea following a week break , I'm not sure if a reaction happens pretty quickly or the following day but its off the menu again. Free from options and eating out are either expensive or extremely difficult  
Today I dont particulary want to eat anything else at all.

went to NM's last night , via a visit to a very very old and dear friend who I havent seen for far too long and who has been ill herself and is a cancer survivor , it was lovely to see her and i wont leave the next visit so long

Mum seems to have picked up slightly in the last few days , MM upped the morphine and she seems to have stabilised.

I haven't spent anything since paying for a works order by mistake , money will be back in my account on Tuesday , fortunately.
NM is on a day shift tomorrow so he plans to come here after work and once mum is settled we will go out for something to eat , thats proving difficult to pinpoint due to the new eating regime but I'm thinking a local pub with a gluten free option may be the best bet. 
I may offer him to stay tomorrow , not something we have ever done before but now I have the bathroom usable and the place decluttered it doesn't feel so shameful in the surroundings , the problem is mum in the mornings but he may just have to roll with that , anyway we shall see what happens. 

Waiting on a macmillan follow up call and then I need to get to the chemist to pick up my own perscription. and sort some dinner out , I got a couple of mini chicken fillets out for me , may do mum a breaded version to eat through the freezer

efes_shareholder

few days since i last posted 

mum picked up for a few days but today as my sibling has eloped of on her adventures , she really isn't good , confused , weak , disorientated and looking somewhat bewildered
shes apologising for being a pain in the bum , she isn't she just needs a closer eye today
Macmillan are calling after work so will discuss

Friday we had another sh*t storm in her sleep and saturday night awful vomiting episodes which I thought we had seen the back off , the decline is still quite gradual and shes picking up in between but i'm apphrehensive.

did manage to get out to eat on saturday night , NM was invited to stay by my bum but he didnt as he wasn't organised at home for the following day when we had things planned , he did get to spend some time in my room when the carer arrived and when I got mum ready for bed , about time really after 2 years.
We had a lovely curry around the corner , my shout £45 
Sunday we spent with his friend and had a takeaway which he covered and then last night I just went over to watch the football , it was an added bonus as I hadn't expected my sister to be covering but I made sure I took it

NM has bought an electric blanket which he put under the bed sheet , it really helped my pain last night so I have purchased a heat pad hoping it will have the same affect at home. I've been following the lowfodmap diet for 2 weeks now and aside from less bloating all of my symptons remain , I have the gyno appt on thursday so I have to make sure I tell him all of this 
interestingly I've read that stomach issues are one of the main symptons for people with adeyimosis

I spent £11.99 on a bottle of shiraz and my vape fluid supplies and thats it for the rest of the week, the red was lovely and potientally a new favorite
I haven't made a success of stoptober but I have defo drank less so i guess thats a gain

efes_shareholder

Today just went from bad to worse

few minutes on the phone to Macmillan and a familiar smell meant I had to cut the call.
I can’t describe how utterly terrible the smell is , I’m trying to clean mum up ASAP as the smell is appalling and mum barely has the strength to lift a foot of the floor.
she’s snapping at me saying I don’t realise how weak she is and I’m trying to get it cleaned up ASAP one because the smell is overpowering and two because it’s another half hour out of my day which I should be working and Macmillan are going to take another half hour as they have called in working hours !!
If I cried I know I wouldn’t stop , mum doesn’t get it , my sister doesn’t get it and Macmillan certainly don’t , I’m not a carer I don’t have a quick way to do these things or a certain way which makes it easier for the patient 
Macmillan call back and after a brief chat say to me it sounds like mum is declining rather then suffering an infection etc which is to be expected considering the prognosis and how she has already beaten the odds 
BUT no one is going to come any assess her , check her general health , I basically have to carry on second guessing if she’s declining or there is something wrong 
Macmillan suggested the carers come in more often , great if we could predict when these incidents may happen.
I don’t have the answers , I know I’m not doing my job well and I know on bad days I could just tell my boss I can no longer work out of pure exsparation

i can honestly say I have never ever felt so alone with anything in my entire life , we haven’t had a nurse visit in over a month even though I have told them about the decline , family members rarely visit and certainly don’t ask how me and my sister are fairing in all of this and as for people I thought were good friends , Well they couldn’t be more missing 
it’s true what they say cancer is a very lonely place 

BDR55

I’m new here after a long time away but just wanted to say how sorry I am. Have you phoned Social Services? Phone before 9 if you can as most likely to get response then. Hugs. 

Buffythedebtslayer

I am so sorry, it really is awful Efes XX So sorry. 

I emailed social services and got some response. I think perhaps - can you ring the hospice or are they macmilian? I would phone the doctor too, I know it isn't the same but I think now with the NHS you have to shout so loudly to get anywhere and sometimes - well all the time I actually want someone to give me some certainty and just bloody do something that helps. 

I am sure tho a doctor should be seeing your mum, this can't be right and it cannot be right that you are doing this. It is truly the hardest thing I can imagine. I think compassionate leave from work? Does that exist? My friend rung her doctor and was immediately signed off. Can you do that? 

Sending you love Efes, keeping you in prayers. Honestly, I wish I could help. 

Buffy XXX