taking responsibilty to get me where I want to be

enthusiasticsaver

Sorry things are so rough at the moment.  No answers I am afraid but I think taking Macmillans advice to get the carers in more often is about the only thing you can do at the moment. Not a magic fix for you but I assume there is nothing to be lost by having them in more often and it may ease the burden on you. You are right in that cancer is a lonely place.  

There seems very little support out there for anything from doctors/nurses . My husband had open heart surgery three weeks ago and we have not had any support since discharge from hospital from doctors, district nurses or cardiac nurses. We are  just having to muddle through and hope we aren't doing anything wrong.  

efes_shareholder

i'm all out of tolerance with just about everyone and everything ( present company excluded ) 

I'm not a carer m I'm not a qualified medical person ,If I wanted to be one then I would have trained to be one 

District nurse team have called this morning , asked me how things were ...........my reply worse then two weeks ago when I asked you to get someone to pop in and do a little overhaul for re assurance , she will try apparantly to get someone to check in ..............i dare not hold my breath

my appt which ive been holding on for , is i've found today , a telephone consultation - absolutely no point in me having bloods taken at the hospital half hour before my appointment then when I think i'm being smart , waste of fuel and waste of time getting my neice to sit but I guess it gives me the oppurtunity to get out of the house

no one can do right by me today , I hate when I get in to this mindscape , I can't see a solution other then just cracking on with it , telling my boss I cant continue to work before he tells me my work is not up to scratch , NM suggested rallying the family round for a meeting ................what family ? of the 7 older grandchildren only one of them is local , aunts and uncles are elderly and in poor health them selves and anyone else who says they care , cares as much as to say that they are glad its not them in this position which only leaves my sister and I 
I aleady know the answer for all of them will be " I would lhelp but I have to work"  which brings me right back to my initial point
NM suggested he popped over later , just to give me some moral support , again this is more of a hinderence then a support as then I feel like I have to entertain him aswell as look after mum and get my job done.

efes_shareholder

enthusiasticsaver said:

Sorry things are so rough at the moment.  No answers I am afraid but I think taking Macmillans advice to get the carers in more often is about the only thing you can do at the moment. Not a magic fix for you but I assume there is nothing to be lost by having them in more often and it may ease the burden on you. You are right in that cancer is a lonely place.  

There seems very little support out there for anything from doctors/nurses . My husband had open heart surgery three weeks ago and we have not had any support since discharge from hospital from doctors, district nurses or cardiac nurses. We are  just having to muddle through and hope we aren't doing anything wrong.  

i'm sorry you are finding yourself with similar lack of available resources , its scary and concerning when we are the only ones who appear to be pioneering for our loved ones

efes_shareholder

BDR55 said:

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. 

I havent as we havent had a lot of contact with social services at all , i have missed a call from them this morning 
they are organising a removable ramp to go on the front step for mums wheelchair

efes_shareholder

Buffythedebtslayer said:

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 

I can't remember the last time we saw a dr , the oncologist waved us off in march and since then we have been left to guess what stage mums cancer is and have absolutely no idea where it may have travelled too or what sort of impact its having 

The nurse has been in this morning , she said to me its natural progression of the disease which is causing mums increase in needs but again there isn't much can be done about that to help us other then have the carers in more often....................its either that or a care home and they are as reluctant to send mum to a care home as she is to go so the pressure then comes back to the family
The nurse did say she was going to get on to the GP

Our hospice is supported by macmillan and I have been told by them over and over again that there is no respite care available since I live here and they only offer sympton management care or end of life.........................excatly who will decide when mum is eligable for end of life care when no one is coming in to do any observations only the good lord himself knows.

vampirotoothus

Efes, I really feel for you and understand how tough this is. My recommendation is to book a 1 2 1 with your boss and explain how bad things are and that you need support, ideally to take any pressure off that you feel in your role. I had to do this when my partner was ill and my boss was understanding and allowed me to work as and when, without adding to my workload. Just knowing that she knew how things were really helped x PS sending a hug 

efes_shareholder

vampirotoothus said:

Efes, I really feel for you and understand how tough this is. My recommendation is to book a 1 2 1 with your boss and explain how bad things are and that you need support, ideally to take any pressure off that you feel in your role. I had to do this when my partner was ill and my boss was understanding and allowed me to work as and when, without adding to my workload. Just knowing that she knew how things were really helped x PS sending a hug 

I can't see them agreeing to that , our role is very much reactive and we lost a member of staff due to covid that has never been replaced , I said we needed too , my supervisor said we didnt and she pulled rank 

Theres lots of annual leave coming up which will mount the pressure , it all has be used by the end of the year 

he never asks how things are here , hes more pre occuppied with his department and doesnt seem to be that interested

no ones interested really - work , family , friends , macmillan , district nurses , GP - they all just seem content to push me well above my capabilities.

I'll be inclined to push for a stress related sick note to take some time out - otherwise im sure i will be guilt tripped

vampirotoothus

Your employers have a duty of care to you. Try your manager and if not speak to HR. You need some support and they need to give it to you.
Alternatively consider taking your holiday in half days and dotting them out for the rest of the year x

enthusiasticsaver

I know it is awful but honestly the only way it seems possible to get any help is for the live in carers (yourself) to say you are unable to cope and force the authorities to admit your mum to some kind of social services/hospice care.  Awful situation and  I daresay you are seeing that as a last resort but for my 86 year old mum the way she got some help was for my stepdad with advanced dementia to have a fall and be admitted to hospital where sadly he died a few weeks later. I know that does not help you but it seems a fact that at the moment if people are seen to be coping (even if they are at the end of their tether) they are left to get on with it.  If you walked out the door tomorrow they would have to sort something out. Of course you are trying to keep your mum happy but it does seem as if that is at the expense of your mental and physical health. 

efes_shareholder

vampirotoothus said:

Your employers have a duty of care to you. Try your manager and if not speak to HR. You need some support and they need to give it to you.
Alternatively consider taking your holiday in half days and dotting them out for the rest of the year x

i've had to put all my holiday down as the entitlement has to be used by the end of the year , unfortunately a few have held on meaning we are now plugging all available gaps just so its not lost. I don't really want to use my holiday to be trapped i this house.

Todays been slightly better on both work and home fronts