What do I do?

I hope by the time that you read this that things are moving in the right direction for you.

Under palliative care you should be entitled to free care and you shouldn't have to pay for personal care. This isn't means-tested and should be sorted out for you.

I agree with Pete or Stan to become a nuissance to your GP, who sounds like is the person who will refer you to a hospice. They will also be the person to sign off on medication etc for the palliative care nurse.

Hopefully the PC nurse will get things moving for you.

Staying on top of people, jobs, roles, medications and all the phone calls and visits is something we as a family have found difficult. The information overload, interruptions and fast-pace of it all. Write down structured notes with dates and times, names, departments and phone numbers.

Make sure you look after yourself - take your meds, take time to switch off and relax when you can.

I hope you get things sorted today and end the day in a better place.

Thank you so much for your very lovely message. I phoned my GP at 8 am, they have a triage system and eventually someone will call you back. as of now it is 11.30 and no one has called me even though I told them it was a mental health crisis. Its no wonder people are dying through lack of care. Anyway a nurse from the palliative care team phoned first thing, I had been in touch with the emergency palliative care over the weekend. She has been out to see us and is trying to find a hospice place for today or tomorrow. I am so scared to get my hopes up because if she cant do it, I think it will just about finish me. I am only holding together by a thread. 

Hey Crystalwitch...

I hope your day has been OK.  Please make sure you are looking after yourself.  And don't forget to take your medications, please!

Can you see how the pendulum has swung for you over the last few days?  It's really hard when you are in the middle of the battle to keep everything in its place - but what you have written above is positive progress.

You have gotten this far, and you are close to getting the support you need.  Whatever the PC team manage to do, even it it takes a few more days, you will get through this... the care situation is moving in the right direction.

Another big hug for today.

Pete

Thank you so much Pete, I am so thankful to have had your support over the last few horrendous days. Yesterday morning was my absolute lowest point. The wonderful, amazing macmillan palliative care nurse worked miracles and has found us a hospice place for today. More than anything else, I am relieved and happy that my partner will now get the expert care and attention she truly needs and deserves. My exhausted body and traumatised mind will heal, but the fact that this person who I have been with for half my life will now get proper care in her final days means more than anything. I will update you later with todays events. 

Watching the ambulance drive away with her, knowing she will never be home again, is probably the hardest thing I have even been through. I have no idea how I will get through this. 

Hey Crystalwitch,

I'm sure. That must have been dreadful for you. I find if I look back on the last year or so, I can pick out a sequence of goodbyes. And they were all really tough. Handing over someone you love, who you are used to looking after, trusting someone else to take over, is really difficult. Being a carer becomes so much of our identity. I was talking to my daughter yesterday about how it is still so much of my identity even though I haven't been doing it now for nearly three months. I think that is why I am on here quite a lot. I want to make sure that my tribe (you people) are looked after as well as possible.

Well done for getting through today. You'll get through tomorrow the same way. And the day after that. One foot in front of the other for now. You've done the right thing by your partner... getting her somewhere where they have the right resources and skills to keep her comfortable and pain free.

On the plus side, if you have handed over the mundane caring tasks, that means that when you do spend time with her you are now free to focus on doing the things only you can do... loving, being with, spending time. 

Please try to get yourself some headspace now. Make sure your friends know you are struggling, so they need to be checking up on you. Sleep, go for a walk, do whatever you need to do. And be patient with yourself.

Hug...

Pete

It honestly feels like she has died. The knowing she has left our home of 32 years and is not coming back, I feel like I am mourning her death. Its actually taking my breath away at times. I am a strong person is spite of my PTSD and depression/anxiety and I know I will get through this, but this pain is like something is stuck in my throat. I am normally very happy and very positive and it feels so alien to me to feel so desperately sad. I am allowing myself today to cry and feel awful, tomorrow after I have been to see her I am planning a "me" day of reading, binge watching my favourite stuff and making an effort to ground myself. Going to make myself my favourite tea and just try and heal a little bit, even if its a tiny bit. I have treated myself to a new planner and am getting my life more organised.so I am going to focus on that too.  I wont be burying my head in the sand, I know how important it is to allow the feelings to come and go, and not deny them. Pete, your words have helped me more than you could ever, ever know. While I would not wish this on anyone, it helps to know others have been, or are going through the same. x

Hey...

All you are feeling is completely understandable. The fact that you are able to join the dots and understand your own feelings is really positive. That will help you to navigate through the current challenges.

It is okay to be sad. Over the last year I've been carrying a real sadness around most days. It is starting to lift as I get back into the normal busyness of life, but some days it still comes to get me. I don't worry about it. Things will change and eventually I'll adapt.

Sounds like you have a plan to get through tomorrow. I did similar things. Our attic is the emptiest it has been for 15 years. Every day is different. I suggest you don't plan to do too much, and make sure you aren't over committed to any plans you do have (i.e. everything is cancelable if you don't feel like it on the day). You are still going to need all your emotional strength for quite a while. Probably with all the running around you think you are physically exhausted, but an awful lot of it is mental and emotional.

Hope you sleep okay tonight.

Pete