Can't cope

Hello, she's not home yet and I'm not sure when she will be but I just know she's being taken care of and is in the best place as much as I would prefer she was at home 

Bless you, I completely empathise with you, it's so daunting but hopefully you will get some answers to some questions and they will put a plan in place. I felt a little bit better knowing there was a treatment plan.

Please if it's not too much let us know how the appointment goes, will be thinking of you Tuesday ️

I definitely will, thank you xx

Hi yeah your mum is in the right place for the best help I hope they help her and sort the pain out nothing worse than knowing their in pain has your mum though about going into a hospice instead of a hospital for care she may be more comfortable there. Well after much phoning and putting my foot down we seen a district nurse today spoke to the GP who has given just in case meds there called so if she needs them in the middle of the night a nurse will come out and give them to her via needle or drip. The palliative care finally spoke to me and are phoning me tomorrow with a plan. So we have done all we can for a moment it's so hard seeing someone u love this way so weak it's the worst I honestly don't know right now how I'm going to come out of this in one piece I don't know. 

Yeah I can imagine she is scared worried angry just like you are like we all are I wish more than anything nobody was even in this position I don't think we will ever come out of this the same person we are today. I will be thinking of you on Tuesday to hoping they give u answers but like I said before write it all down because your mind will go blank 

Hey reeb

it will be the best place for her just now she will be well cared for and it will give you some time to do anything you need to do or get organised for her coming home. I’m going be a nervous wreck come Tuesday.    I really hope as well we get a nice doctor too as that is so important because some are so matter of fact when it’s actually your life they are talking about anyway I will report back on Tuesday.  Thanks for thinking of us.   I hope your mum gets on ok and you get her home soon. xx 

Hello, she's having her operation today  just praying all goes well and it helps her mobility once recovered.

I don't know a lot about hospices in all honesty, I know that is her long term plan when care at home is no longer the best option but I don't think she is ready for it yet but I could be wrong, I think I need to speak to someone about it 

Oh that's fab, just to know that if needed there is someone available through the night to relieve her pain is a relief because often the night is the worst or it is with my mum. How did it go with Palliative Care?

You're doing everything you can and your mum is so lucky to have you as hard as it is on you, you are doing amazing ️

Hello,

That's true, I've set up her bedroom with her hospital bed and other bits so it's comfortable for when she comes home.

I know what you mean, we see a number of different consultants because the main one isn't always available and some of them I could just hug because they give all of the information but have amazing bedside manner and some I would rather not see again because you come out feeling worse than you went in. I know they have to be blunt sometimes but there are ways to go about it. I hope you get a nice one.

Hope it goes well today xxx

Hi, fingers crossed it all goes well for your mum and she recovers well. I only know a little bit about hospice care but it seems far better than hospital but you can have district nurses that can come out through the night and day to give pain medication so she will never be in pain they will probably arrange district nurse in the hospital if not ask them about it. Palliative care are coming out now at 2 o'clock so hopefully they can help I had the district nurses and the GP out yesterday and she has been given new pain meds and they are actually working thank god but that's one thing ticked off the list which is nice I feel iv become a nurse and a pharmacist over night I have. Iv had to learn a lot my self because they won't give help unless u ask for it. 

Hope your doing ok xx 

Hello, thank you. I'm gonna call them soon and find out if she's in theatre and if they know how long it will be. So nervous

I will have to find out who my mum's district nurse is although I'm hoping this op helps with the pain a bit. Do you know what the palliative care team can help with? 

Ahh I'm so glad to hear the pain meds are working! It's frustrating not knowing what you need to ask for or who to ask for what, someone should tell us when we find ourselves in this situation.

I'm okay, hope you are too xx

Hey all...

Sorry to jump into this thread (and I confess I haven't read all of it (it's a bit long)) but it seems from the last couple of messages like you are where I was with my wife a few months ago (i.e. transitioning to palliative / hospice care).  For context, Fi had a brain tumour and lasted a long time with good support from the hospital and minimal oversight from the GP - but reached a point in about July where I could no longer look after her without professional help.  At that point we got a referral to the local hospice (I think this was through the GP - but I believe the patient can also self-refer).

The bit before you get referred is really tricky because you don't know what you don't know or what help you may be able to access.  If you can find out who your local hospice is early and start a conversation with them (assuming they are any good) then they have all the information, they have been here before and they can help you to navigate everything.  In our case, this initially included helping me to arrange a blue badge, sorting out counselling for both Fi and I, liaising with the psychiatric team at the hospital to get her mood meds sorted and just generally getting Fi grounded and used to the fact that she had a different team of people around her.  Later on, they helped to connect me to the district nurses, to community occupational health (getting bannisters fitted, etc), and arranged a hospital bed, commode, etc, as well as eventually coming out to do assessments and support and check that meds were right and liaising with the GP to sort out prescriptions.  Oh, and also telling me when it wasn't safe for me to continue trying to look after Fi on my own any more and arranging the funding assessment for carers.  Basically they were indispensable.  Even then it was confusing at times where I was supposed to get help from - but if I was in doubt, I would just call the hospice and they could tell me who to call.

Fi was never admitted to the hospice - with all the help I received, I was able to care for her at home till the end - but I absolutely couldn't have done it without the support of the hospice team.

So... I hope that the answer for you is to get in touch with your hospice early and start a conversation about how they are able to support you.  ANd I hope they are as good as my hospice was.  Of course they are resource/cash-limited, but I think they would prefer to start a conversation early so that everyone knows what to expect.

I think carers often feel that they are "demanding" and asking for too much help.  In reality, it is in everyone's interests for you to carry on acting as carers - however much external support you are given - it is still much cheaper for someone to be looked after at home (even with professional carers coming in multiple times a day) than admitted to a hospice or a hospice.  So don't be afraid to ask questions and make sure you put your hand up if you are struggling.  I never once had a professional tell me to "just deal with it" - partly because they were all lovely, and partly because they needed me to keep doing what I was doing.

Another thing that was really helpful was that in the last six months we discovered an absolutely amazing GP in our surgery who basically adopted us.  This gave us a single point of contact rather than being continually bounced around the 20 odd GPs in our multi-site practice.  If you have a GP you like, it might be worth asking if they wouldn't mind being your main point of reference within your practice.

I want to also recommend a book I read a couple of months ago that I wish I had read earlier.  It is written by a couple of palliative care doctors and is called "the beginners guide to the end" - it deals with the things that we all and our loved ones should know about the process of preparing for dying, dying and the aftermath.  It is very practical and (at least in the version I read) focuses on the UK system.

Hopefully some of that is useful.  Apologies if I have missed the point, or just duplicated what others have said.  (And made the thread needlessly longer!)

Pete

Hi Pete, thank you for the response it's always nice to get advice from someone who has been through it. I'm so sorry for your loss but it sounds like your wife had the best end of life care she could get and that's all we can wish for in this situation I think.i have been in contact today with the palliative team in the hospice they were lovely and completely took my mother's wishes on board to stay at home my mum does not want to go into hospital ever again and that is are plan to keep her home with the right support and it is a lot to learn iv become a nurse pharmacist and a advocate over the last few weeks I think I'm doing ok so iv been told by the nurses. I will look up the book as I definitely need that information I though it was the end the other day convinced as I wasn't sure what I was looking for but it wasn't the end and I don't think now we are near the end yet. So thank you I will have a look. How are you coping now with the second stage of your journey because I worry how I'm going to cope after because sometimes I find my self coping now because I'm so busy doing things for her contacting GP nurses it almost gets me through the day in a unhealthy way I think but when that is gone I don't know what's next really.