taking responsibilty to get me where I want to be

efes_shareholder

lucielle said:

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

not really , my sister doesn't get her shifts for the following week until the thursday and doesn't know how hours from week to the next
Its just a godsend that I am working from home otherwise we wouldn't be coping at all 

efes_shareholder

Kitten868 said:

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

Probably not due to her shift work but i'll work with her , she just needs to give a bit more and not bolt - shes just arrived here now so i've set her with some housework as there is nothing else to do at the moment and it saves me a job.
i have one daughter up the road but she is my anxious one so don't want to overload her , she has popped in with some shopping etc which has saved me having to go out.  not sure about my sisters girls , one has been in and bought some protein heavy foods etc but I'm not sure how they will manage with all the meds or whether I trust them with it - again catch 22.
Macmillan are calling on friday , I will then have some contact details and hopefully be able to have a private chat with them.
I have one other job to sort which is the front door lock , my key is the only one that works and there is a knack to it , i've had more cut but they wont cut off my key , or should i say they wont work so I guess the easiest thing to do is get the barrel changed so I can hand keys out and put one in our keystore for emergancies 

GrannyKate

My sympathies - I do know how hard it is.  Talk to MacMillan - they provided DH with a care package at home once we knew he had only a few months.  We could have up to 4 visits a day and also provided a cover if I wanted to go shopping and overnight.  This was not means tested and was free.  Getting DH to eat was the hardest thing.  He eventually decided to go into the hospice which is where he spent his last 5 weeks.  Have you applied for attendance allowance - mum should get the higher rate with no waiting time.  McMillan will help with this.  

efes_shareholder

GrannyKate said:

My sympathies - I do know how hard it is.  Talk to MacMillan - they provided DH with a care package at home once we knew he had only a few months.  We could have up to 4 visits a day and also provided a cover if I wanted to go shopping and overnight.  This was not means tested and was free.  Getting DH to eat was the hardest thing.  He eventually decided to go into the hospice which is where he spent his last 5 weeks.  Have you applied for attendance allowance - mum should get the higher rate with no waiting time.  McMillan will help with this.  

hiya , thank you  we have a phone consultation with macmillan on friday , i'm hoping that I can also have a private chat. They gave me the impression that they don't come in at all at the moment because of covid , i've heard some positive and some negative reports of macmillan so will be interesting to see what our experience will be - i'm sorry for the loss of your husband , certainly eating anything seems to be the biggest challenge and then its keeping it down or letting it out at the right flow
I haven't claimed anything as yet , i've no experience with handling benefits but it is something I need to be checking out but i think i need all of mums details with me and she doesn't like giving those up as her finances are a bit of a mess , we have no nurses etc tomorrow so maybe I can get on to this one then.

efes_shareholder

argh i could scream , doctor just called to say that yesterdays bloods have come back with insufficient sample taken so they need to be redone , 30 odd mins on hold ( whilst trying to work) to get this booked in for tomorrow ..........................it just seems like they are using every delay tactic possible to not have to do it.

Kitten868

I know what you mean about deliberately delaying things but honestly I can't possibly comprehend how it must feel for you. The results hold everything in the balance for you and your mum and most importantly her care. 
Have you prepped a list of points to discuss with Macmillan tomorrow? I think you should include application for benefits on there but I appreciate there's more pressing stuff. 
Is your mum still being secretive about her financial situation? Surely she needs your help to make sure its all being paid. 
I wish I had some practical advice for you. Please know that I think you're brilliant and I wish you strength. Xxx

efes_shareholder

Kitten868 said:

I know what you mean about deliberately delaying things but honestly I can't possibly comprehend how it must feel for you. The results hold everything in the balance for you and your mum and most importantly her care. 
Have you prepped a list of points to discuss with Macmillan tomorrow? I think you should include application for benefits on there but I appreciate there's more pressing stuff. 
Is your mum still being secretive about her financial situation? Surely she needs your help to make sure its all being paid. 
I wish I had some practical advice for you. Please know that I think you're brilliant and I wish you strength. Xxx

thank you kitten , i dont feel brilliant but i guess i'm doing my best and thats all I can do - i've phoned for a form for DLA today so thats rolling but macmillan can help i'm told so it is on the list.
Mums brighter today but very weak and wobbly and i've had to help her back and forth from the toilet. shes managed one of her ensure drinks , a protein enriched yoghurt and a slice of fruit cake but she has promised me she will have some dinner this evening.
Shes still got her wits about her when it comes to her finances and has been logging on and making calls to make her payments , to be fair the illness has improved her financial situation as she isn't buying pointless things she doesn't need and off course the shopping list has reduced significantly.
re the scan i am lost for words , my doctor got the frustration from me , i literally said to him " is this them playing the long game" - it needs to be done and it needs to be right as blood clots could cause a bleed with the bioposy but why was this not requested last thursday when we had the consultation and mum confirmed she wanted the scan/bioposy..................you would hope that a cancer nurse would know that this is a standard thing hospitals ask for when doing the procedure.

efes_shareholder

well , todays a new day.
Mum is currently in hospital , as i said yesterday she was very weak and wobbly , i had to help her to and from the toilet many times and had already decided I was putting the commode downstairs for the night. Then she got up to go to the toilet and was very wobbly as i got up to help her she fell completely backwards to the floor. She didnt know what had happened but once I knew she was speaking etc , i called 999 - felt like I could be overreacting but I am fed up with the over the phone treatment and the lack of actual assessments. They came within 20 minutes and it was quickly established that her heart rate was incredibly fast and they said she would need to go to hospital. she didnt want to go , she looked absolutely terrified and off course due to the current situation I was not allowed to go with her. I felt terrible I sensed that she thought she was not going to be able to come home or see her family etc.
She is still there now , I called this morning and they are waiting on a ward bed however did say she may be able to come home later , I'm taking anything they tell me with a pinch of salt and hoping that however distressing last night was it may finally mean we get some kind of care plan in place. 
Macmillans call is scheduled at 11, after a call from the community care to say they dont do bloods on a friday as our hospital don't accept them , I'm really ready to let them know excatly how we are feeling.
Its not helped that my calprotien stool test has come back as abnormal so i'm trying my best not to consult doctor google but do have a harbouring concern that my own problems could be sinister , i've raised an e - consultation with the doctor to discuss as I accessed these results online.
My son is now due down tonight to visit his nan who he now cant see as she is in hospital , I dont know if and when she will come home , I know she is waiting on a bed in the ward and that she will not be  happy to be there. I feel very guilty for calling the ambulance last night as i know its the last place she wants to be but have been reassurred by many that she wouldnt have been taken in during covid unless it was needed. 

kayannie

You have no need to feel guilty, you did exactly the right thing. A similar thing happened with my mum who also had pancreatic cancer. She was admitted to hospital after falling - sadly she never came home again, but she got the care in hospital that I was finding a struggle to cope with. Of course, this was in pre-covid days so I was able to spend a lot of time with her in the hospital.
Don't forget that you need to look after your own health too.
Take care.
KA

Kitten868

I can totally understand why you think you did the wrong thing - it's not what your mum wanted. However, it was absolutely the right thing to do. She has other issues going on that you cannot see as you're not a medical professional. You are doing wonders with ensuring you're on top of her nutrition and are so thoughtful in what to make for her though. 
Make sure you write a list for your macmillan chat and be certain on what you want to discuss. 
I really hope your sample result isn't anything sinister and just a by product of all the stress you're under and can be easily rectified. You've been amazing at advocating for yourself and getting the tests done and I hope the doctor is useful and explains it all. 

You don't feel brilliant because brilliant people never do. You're doing more than most in your position and are taking on so much. I think your son should still come either way. You could do with some help and support and just time with someone you love. Xxxxx