Near the end for my mum

I do its so hard and you do feel on your own. We have a had a disastrous stay in our local hospice .Bill went to see the palliative docter on Tuesday re pain control they admitted him. We left him he was settled and fine they decided to move him and he was really upset by this the staff couldnt understand him he has expressive disphasia from his brain mets  When we got there in morning he was so distressed we had to bring him home. He is asleep in bed still in pain no further forward.You just don't know what to do for the best Thank god for this group its stopped me from going completely doo lally Ha ha lots of  hugs x

Oh poor bill. That sounds terrible for him. 

I really don't understand why it seems so difficult to understand what people need. Most of the time when dealing with consultants and gp I feel like I am banging my head against a brick wall. (the nurse at the hospice and district nurses have been fantastic) but the rest of it just adds to the discomfort, stress and hopelessness that we as carers have to see our loved ones in. It's just terribly unfair. 

Hugs to you xx

What area of the country are you? I have a friend who is a nurse manager in palliative care. She may know of something! X

Oh akela2516 

That is so kind. My mum is in Hertfordshire. I hope your husband is doing ok and you are too. X

I hope you find a solution. I will ask my friend if she knows anything. Sorry I have been hectic. My husband is good ATM thank you x

I have just spoken to my friend, she advises that her GP and hospice should have helped or Marie curie but I believe you have been down that road. May be worth pushing again. Sorry not much help really. I hope you get a few hours with your children xxx

So today goes something like this. 

Mum wakes at 1:30, 9am and 11am throws up brown liquid with bits in it. She then falls back to sleep. 

The district nurse is 30 min late arriving for mums syringe driver, so mum is getting worried and keeps telling me it’s Beeping  

when she arrives I tell her about the vomiting and get a shrug of well she hasn’t eaten in a while so it’s normal  ( a while, it’s 17 days since the last bit of food she has had) and I am not sure brown vomit is ever normal. She can hardly sit up now, sipping little bits of water, she keeps telling me that she wants to go and has had enough. 

My two children came over today to see me which was lovely,(it’s been over a week since I saw them)  they cried and kept asking why I wasn’t coming home, I explained to a 7&6 year old that I had to look after nanna, as she is very sick. They asked was I going to miss Christmas and I explained that yes I probably would. 

Where is the support for carers like us who are trying to look after loved ones, to make their last few months and weeks as comfortable and settled as possible. I just feel throughly angry and forgotten by an already over worked system that has repeatedly let my mum down over the last 8 months. (From gp losing blood tests and results x 3  to not sending off referrals, to a consultant ignoring questions and then being told “ you must do this and if you don’t I can’t help you” and just not doing their jobs which has made my mums life that little bit harder) 

Sorry for ranting but I think the last few months have finally got to me. 

Hi, you must be exhausted! I wonder if the medical professionals realise that we are capable of taking in proper information and explanations. We realise they haven't the time for in depth discussions but if we understand, things, I feel are easier to accept. Ken went into a hospice last Monday to be redrained, but this wasn't possible as he deteriorated rapidly and although a bed has been delivered he won't be coming home. He no longer takes any fluid. You are in a predicament where you just can't find an easy solution, I truly hope that whatever the outcome, you will know that you have done your very best. In my view you are amazing xx

I am a nurse that brown fluid sounds a bit like coffee ground vomit which may indicate bleeding! No it is not normal but it sounds like the nurse can't be bothered! 

I so wish I lived a bit closer, I am in Somerset but I would sit with your mum for a few hours. My heart goes out to you xxx

So today is boxing day. 

I got to see my children open their presents yesterday am and speak to them a few times which was lovely. I am very grateful for facetime. 

21days since last ate and only having maybe 4 sips of water a day. 

Yesterday was her vomiting dark green liquid everywhere (I couldn't get the bucket in time) and snappy and her waking every 2hrs. Then she settled after some morphine and midalzom. 

She is still with us, today she tried to sit up and was so wobbly, I suggested she sit down and got a very slurred no. She then laid down. She kept asking who was here and where she was. I told her at home just me and her but I am not sure what she is hearing or seeing. She is very confused now and I am struggling to understand what she is saying most of the time. 

She has a big dose of morphine, anti sickness and now midalzom in the driver. Plus a top up of morphine as and when needed. 

She seems less snappy and less restless which is good. 

All the nurses are amazed that she is still going. 

I have to make some big decision soon as hubby goes back to work on the 6th, the kids go back to school and I go back to college. I financially or physically I won't be able to look after her 24/7 then. So it looks like I may have to think about a hospice. I know if she is still mentally here  it will destroy her as it's the one thing she has asked of me. But I am out of options ( i will of been here 24/7 for  24 days by then) but in the back of my mind I keep saying she can't possibly carry on like this for another 10+ days???? 

Hope everyone had a calm and as restful Christmas as they can.