Same here - My Dad is in palliative care with small cell lung cancer that has spread to his brain - he is Hospital after a fall and we are trying to get him home as he is very aggressive/agiatated in Hospital. He’s stopped eating/driinking but doesn’t seem to be in pain atm ( but very distressed at not being at home) like you my Dad was the one to sort everything so it’s very hard to see him like this. Just wanted to let you know you are not alone in what is happening - I never thought I would post on forums etc but sometimes it’s easier to say how you feel here than to family/friends! I’m at the numb but practical stage atm -  not sure if that’s a good or bad thing.. 

So sorry to hear what’s happening with your dad. 

I know it all so well, my dad went in for his brain biopsy / neck / splint surgery in April and when complete he was never the same. It was only when we got him closer to home he started feeling like himself. We finally got him home 7 weeks after his op but an infection 3 weeks into his home care he caught an infection which meant he had to go back and he was so agitated, angry, *** off and was never the same person.

I’ve been through a lot of the stages of grief right now from being devastated, angry, numb, lost and right now with the funeral out of the way it’s just quiet and eerie having to move on. 

My thoughts are with you and your family

Chris 

Thank you for the support. Dad is now on a syringe driver in hospital but we and he what he would want is to be at home. In his slightly more awake moments that is what he is asking for. We have put ‘the process ‘ in place but have been advised that once we take him home that we will have very little support over night in terms of pain relief and management of symptoms.. that’s scary.. why can’t the systems be in place for this? It’s a battle..we will be there and do most of the looking after for a full 24 hours but we can’t give pain relief etc - I’m angry and scared at the same time.. All we and he wants is peace and dignity -,it feels like it’s too much to ask.... 

Rant over! So sorry for the loss of your Dad and thank you for taking the time to reply.

wishing you all the best too x

It’s so tough for you all, there’s nothing worse than seeing them in so much pain / frustration. My dad was / always will be my hero and it’s awful seeing them become weak after seeing them being so strong all your life. 

We were given a care package paid for by the NHS where we had 4 x visits per day but these were just between 0700 - 2200 and anything outside we were always on hand to help him. We were lucky in that he slept well from 2200 until around 0530 most days and didn’t need syringe medication but I do hope you get something sorted. My dad did become more like himself once we got him home albeit only for 6/7 weeks but it was worth it! He saw friends, family, went to the pub in his wheelchair, watching movies, tv series and having dinner with us all. I couldn’t recommend it enough if you can get something sorted. 

You may need to use some assistance equipment like a hoist, Sara steady etc…but the occupational therapists show you how to use them before they come home - at least that’s what they did for us.

Thank you for your kind words, it’s an awful disease and the sooner there is a cure the better. 

Take care and let me know how you all get on.

Chris x

Thank you - he’s coming home tomorrow and its exactly as you said with care plans etc - he’s already on the syringe and anti aggressive medication- he can’t get out of bed  and has pretty much stopped eating/drinking so fairly much near end of life  - he’s also very stubborn so will not make this easy by any means! He loves his daily pint (only one) - at the pub..we will try and make sure he has a sip of his favourite pint at home when he his awake (about 3 hours in total in the last 48 ) - I’m anxious (not about him dying ) but know that people have been waiting for nurses for hours as they are so overstretched- particularly in community care and that worries me.. Thenk you for taking the time to reply and reassure- it means a lot.

I’ll let you know how things go x

Such lovely and very sad replies.  Sending all our love to everyone of you affected by this horrible disease.  We’ve done it before and we’ll do it again, but why is life so cruel?  My heart hurts 

It’s awful isn’t it? We were a close knit family, done everything together then our world was turned upside down in March. The last month has been the worst in living memory after my dad passed away. 

Sending you all the strength and support x

I lost my husband 6 weeks ago from the same illness so I know how you.are all feeling . It's hard knowing you are not going too see them every day.  I tell myself that my husband wouldn't want me to sit around being miserable so.I.am just trying to fill.my days being busy 

Thinking of u all 

Yes it’s exactly the same for us now the funeral, wake etc…have all been and gone. It’s now the quiet / emptiness of how to move on. Just have to take each day as it comes by keeping busy like you say. Doesn’t make it any easier as it’s still quite raw 

We got Dad home on Wednesday afternoon by Ambulance - the discharge from Hospital was somewhat hurried - 2 hours earlier than originally told and literally being given bags of meds/paperwork and within half an hour out the door. What happened in the next 24 hours was without doubt the most painful/distressing experience that me my Mum and brother have ever experienced. Dad was extremely agitated, in pain and distressed. Having only eaten a yogurt and banana in the last week and occasional sips of water he spent the next 14 hours trying to get out of bed which took all 3 of us to try and keep him safe pretty much non stop throughout the night. On ringing the emergency fast track helpline we were told it was up to a 6 hour wait for help. After a 2 and a half  hour wait the nurse came and saw Dad in a 19 minute period where he had lied down in bed exhausted but she couldn’t administer any meds as he appeared‘comfortable’ - 10 minutes after she left he was trying to get up and out of bed again.  The GP came and looked at the driver meds mid morning said it was on the minimum dosage and clearly significantly below what should have been prescribed. we were luckily able to get the fast pall team in place much sooner than told and they took control quickly. They also got the meds sorted to the required dose and Dad had a very peaceful night and following day. We were also very lucky to have a Marie Curie sitter/nurse (extremely experienced) in for Friday night as well as we were all so exhausted. She kept watch and monitored Dad whilst also taking the time to talk to us ( we all still got up several times in the night tho!) Dad passed away peacefully on Saturday with all by his side at home.Mum and I both haven’t cried yet as such -  I feel numb like I’m encased in a protective shell. We also have questions with regard to med levels that the pall team and GP considered significantly below what was needed causing Dad and us undue distress. 
Sorry for  the long post - love you Dad RIP

So sorry- this reply is in reply to later in the posts as an update. It’s been a tough few days but don’t want cause any upset to anyone -please be reassured that dad passed away peacefully at home with us by his side as he wanted. 

So sorry- this reply is in reply to later in the posts as an update. It’s been a tough few days but don’t want cause any upset to anyone -please be reassured that dad passed away peacefully at home with us by his side as he wanted.