Awake and up all night

Hi LillieB, and a warm welcome to the forum, but I'm so sorry you have to be here.

Firstly your doing a wonderful job, I've been where you are with my mum, and know what a difficult, physically and especially emotionally, calling caring for a loved one at the end is,  and never feel guilty for thinking about yourself at times, it's so important you give yourself some time every day to care for yourself, to not do this would hurt your whole family, so please try to "switch off ", and recharge your batteries, to be able to care best for your dad and mum, and just as importantly you 

LillieB, I have advanced prostate cancer with bone mets, I was also in healthcare for 15 years, 5 of which were in palliative/cancer care, and anticipatory grief is normal, indeed it's unusual to not have it, and not knowing what to do at times is to be expected, can I ask have you been referred to your local hospice and their palliative care team, and the district nurse, the hospice team are not just for the very end of life, I've had mine for 18 months and they do work in the community, the district nurses are your key to accessing specialist nurses, equipment and services, and they all support the whole family, you access them through a GP referral.

I'm sure both your parents are very proud of you and everything you do for them, sometimes just knowing your there for them if needed, a visit or phone call, or a cuddle and a smile is enough, but I can see you do so much more, so please don't feel like your a terrible person, I  have sadly seen1 or 2 of them, and you my friend are definitely not one of them. 

Eddie xx  

Hello LillieB, I was writing a reply to you but the forum software asked me to join again, unfortunately losing my reply when I pressed 'click to join this group' (I am a member and had logged in). Probably my finger trouble. However, eddiel's eloquent reply is very similar to how mine was shaping up. I echo eddiel's words. If the visiting carers or your instinct suggest that your Dad is very near passing, you may feel that being with him is your duty, but it is actually very difficult to forecast these sad events with any precision. My brother and I were advised by hospital staff that our unresponsive Mum was unlikely to pass away for at least 36 hours. We therefore drove home to our respective families, intending to return the following day. She died before we had arrived home about 2 hours later. In 2018, doctors told my son and daughter that I was unlikely to survive for more than a day or three because I was so ill from constant blood loss (bladder cancer). Transfusions were not keeping up and organs were struggling. Son and daughter took turns staying with me, sleeping on a couch in my side ward if necessary. I was generally asleep but aware when one or other held my hand for a few minutes. Obviously, I'm still here and able to live independently at home with palliative care and living a fairly normal life. I'm as surprised as anyone!  You are giving your time as often as you are able. Just a few minutes now and again may be all your Dad actually needs as nature takes its course. This will also help you to bear the intense emotions which can result from losing someone close. Do not feel guilty. You are doing a lot. I hope your Dad is not in pain and can pass peacefully. Your Mum will appreciate the emotional support you are giving to each other as well. Love from Ray x

Oh Lillie, first I’d like to welcome you to the forum then I’d like to say Please do not be so hard on yourself. Under all that guilt, you know you are doing all you can for your dad and your mum and you are right, you need time away from it all to recharge your batteries so that you can be there when you are needed.

Like Eddie, I too have been through it all with my mum. She suffered for three years before dying of stomach & secondary cancer, it was heartbreaking to see her fade away day by day and I do think I grieved for her before she actually died and went through a lot of the emotions you mentioned. I was almost 19 years old. The one thing I remember thinking was, I can’t let her die and not have told her how much I loved her. I didn’t want to have any regrets and as I was given the chance, I made sure I said everything I wanted to before she died. Then because I had opened up to her she opened up to me. So nothing did go unsaid and that is still a comfort to me even now.

Having incurable cancer myself, to me a hug means more than a thousand words, so please give your dad & mum lots of them. Also you take them from the friends or family who are supporting and comforting you as you need them as much as anyone else. You w8ll be in my thoughts and prayers.

Oh, you poor love - you have my heartfelt sympathy, as I'm sure everyone else who reads your post will have too.

Apart from everything else, you've obviously got survivor's guilt and it's a rotten feeling to have - I know it all too well. 

But, hard as it may be, you must try to shake it off as you've nothing to feel guilty about and none of this is your fault.  It's just one of those rotten things that life throws at millions of others every single day.  Awful but true.

I'm absolutely certain your mum and dad are supremely proud and grateful for all you do - take your dad's words to you as gospel as he wouldn't have said them if he didn't mean it.  You have taken a lot on but don't let it weigh on your shoulders like a heavy burden.  Cast it off and spend some time with your friends; you're doing nothing wrong and more than likely your parents will be happy you're trying to keep some normality in your life - they certainly won't want to see you sad or unhappy.

Be there for them when you can, which I'm sure you already do, and try not to dwell on everything that's happened as they definitely won't want you to get depressed.

Your dad will hate what's happening to him but inside, he's still the same person you've always loved.  Let his carers do their job - there'll be many others they help to relieve those who live with them 24/7 and give some respite to.

It's very hard not to let your mind race ahead to what will eventually come about, it's only natural.  Instead, concentrate on what's important in the here and now.  When your dad's awake, just sit with him, holding his hand.  If he wants to talk let him, about whatever he wants.  You may even find yourselves sharing laughter if you reminisce about happier times.  It's always going to bring some sadness but talking about things you both love can bring those times back a little.

If you read this post anytime soon, lack of sleep is a common problem most of us night owls share for various reasons.  If sleep does evade you, you'll usually find some of us here to give support or even cheer you up.  You can chat about anything you like, no matter how mundane or daft it might be as it's a tried and tested way to take our minds away from the gloom.

One of our Champions will be able to steer you to a group with more experience than me to talk to, as they'll know better and be able to give you good advice.

From a total, but very sympathetic, stranger, sending you hugs and strength.

Take care love.

Gill xx 

Hi Ray, and welcome to our little thread, and having read your profile, though I am truly saddened for the loss of your wonderful mum, I'm glad you have defied the odds and are managing a somewhat normal life, an inspirational story to give a little hope to others, and hopefully for a long time to come 

Eddie xx 

Lillie, your dad will be proud of you!  You sound like an amazing daughter!

It's hard to know what to do.  Just be there for your mum and dad!

Don't feel guilty!

Take Care of yourself 

Hi, 

Thank you all

Sometimes it's hard to know what's going on or what's going to happen. 

Sometimes I feel like he's going to pass soon Then I feel like oh maybe it's going to be a while. The doctors haven't said how long as dad said he didn't want to know. I go back and forth on if it's a good thing to know or not as based off what I've seen you can never really know. 

The local hospice are involved and have been amazing so much better than the NHS. They call once a week and make sure to answer any of his questions. They have also sorted his respect form and DNR and he has emergency meds so that when the time comes if he can't get into a hospice he won't be in pain. 

I'm just scared. 

Morning LillieB, you are welcome my friend, as to the question of how much time, the doctors don't really know either until the final few weeks, and like most of my friends on the living with incurable cancer forum, we choose not to know, and I'm glad you have your hospice onside, I too have my ReSPECT and DNR forms in place, and if I could suggest,  getting them backed up with a POA will guarantee they are followed.

It's totally understandable you are scared sweetheart, who wouldn't be, and please if you need to cry, scream, shout or rant then do so, but not in front of dad, we dad's may not always show it, but we do get emotional too, and knowing we won't always be there for our family is tough, so being strong in front of him will help, just having you with him will help so much, and please remember even if dad doesn't seem fully aware or conscious, he will still hear everything going on, and will know if he's being touched, so holding his hand and talking to him is so important to him, as is telling him you love him.

Eddie xx

Hi, 

I saw him today and he seems to get worse. He's barely responsive and just sleeps all the time. 

I held his hand and spoke so he could hear our voices like you recommended. 

What happens at the end. His wishes are to go to a hospice but who makes that call do we or do the hospice. 

The pilgrims lady mentioned on the phone that it sounds like his body is shutting down but when do they say this is it or are we still hoping that he turns it around and gets slightly better. 

I really can't shake the feeling of guilt I have that I'm not doing enough or being there enough for my dad and my family. 

Hi LillieB,  I am so sorry to hear your dad is deteriorating my friend, but I'm glad you held his hand and had a chat, he will be aware of his little girl being there for him.

Regarding the hospice and being admitted, firstly, it's not just for end of life, you can be admitted if you're going through a difficult time as well, your physician/medical team and you and your family, can recommend it's time for your dad to be admitted, it's a collaborative decision, with your dad's wishes at the forefront.

In my experience, and as it's your dad's wishes, I would be contacting his medical team as soon as possible, I'm not for a second saying his body is shutting down, I'm surprised anyone would say this based on a phone call, but he will get the very best treatment at the hospice,  and the best chance of some improvement, many patients, go through what is called terminal lucidity, it's a natural part of the dying process, and can give a few days to weeks, occasionally more, when you get your wonderful dad back, but not all.

Your feelings are familiar to  most of us who have been through what you are going through, we all felt helpless,  lost and out of our depth, and why wouldn't we, it's an awful place to find ourselves, to be thrust into something beyond our control with little idea of the enormity of the situation, how would anyone know what's enough help, your doing the best you can my friend, that's all any of us can do.

Eddie xx