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Life-limiting illness

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Original poster

Looks like we're nearing the end. ? Last few days

108 replies

VivaLeBeaver · 13/11/2013 19:18

My dad is ill with terminal cancer and has taken a turn for the worse. They gave him a few weeks about eight weeks ago.

He's now stopped eating. Drs have said it may only be days now.

He's getting discharged tomorrow and we have a care package in place. Overnight carer, other carers three times a day, district nurse.

I've been visiting him this afternoon and he looks quite well. Was sat in a chair, talking. He's forgetting some words and gets frustrated as at times he can't say what he wants to.

I know its really hard to judge but I'm struggling to know when to not go into work. I initially told my boss I wouldn't be in the rest of the week as from what I was told on Monday I didn't think he'd be with us by the weekend. But today he's looking so well I've told my boss ill be in tomorrow, which she says its good as I only get so many days off allowed.

As it stands I haven't had any time off yet. Dad is only ten mins down the road so I can visit in evenings. Will I know when I need to be there?

My gran died very quickly and even though she was only ten mins down the road and I left as soon as I got a phone call I didn't make it to the nursing home in time. Ideally I wouldn't be going to work this week as I'd like to spend as much time as I could with my dad but if he did live for another two or three weeks I don't think my boss would be very impressed.

OP posts:
fanjoforthemammaries7850 · 22/11/2013 23:28

You are an amazing daughter x

Original poster
VivaLeBeaver · 22/11/2013 23:30

I think I'm just doing what anyone would do.

Dh brought me a pizza over earlier on in the evening. Large Pizza Hut one and I scoffed the lot!

OP posts:
DoctorWhoPrefersToFlySolo · 22/11/2013 23:57

Sorry to hear you are going through this Viva :( you are doing the right thing. I was lucky enough to be with my Darling, Darling Dad every single day for his last 3 months barring one day when he was in the hospice for respite whilst they arranged the equipment for home.
Dad had only a few night nurses for a few nights over his last fortnight and the one that Dad liked best was the one that was there the night he called my Brother and I back at 3am. He had been checking Dads pulse throughout the evening before we left and he told us that it would be soon. I think we were only at home for 3 hours before we got a call at 03:00...quickest 8 miles ever! and as it happened, Dad left us just after 10 and my Brother had left just 40 minutes beforehand. I was in the process of telling him to get back when Dad went, so although Db was not there he was connected by the phone call IYSWIM?
I have no regrets about spending every minute I could with Dad. I'm sure you wont either.x

LegoAcupuncture · 23/11/2013 08:04

Glad you're managing to eat. Wil be thinking of you and your family today x

toffeesponge · 23/11/2013 18:12

I've not posted but have been thinking of you Viva.

I wasn't able to visit my Nan when she was dying and I still regret it. DH was able to see his and was there when she died. He said it was a comfort to see her and from diagnosis to death was days so a very upsetting time.

Remember to look after yourself too Brew.

Original poster
VivaLeBeaver · 25/11/2013 12:06

Unbelievably dad is still here. Every time I see him I think he can't last the day.

Am sat with him now and he's doing the Cheyne Stokes breathing where he keeps stopping breathing for ages. Just as I think that's it, he starts again.

He's not eaten or drunk since last Monday and appears to be unconscious for the last couple of days.

I rang the GP today and explained to the receptionist that I need a sick note but can't actually come in to see the GP as I'm with my dad. She said she wasn't sure they'd be able to do me one as basically my dad isn't registered with them and I could be making it all up. She said she'd get the GP to ring me back.

OP posts:
Original poster
VivaLeBeaver · 25/11/2013 12:19

GP has just phoned and happy to write a sick note.

OP posts:
DoctorWhoPrefersToFlySolo · 25/11/2013 13:11

That's good Viva.
I think that breathing thing is normal towards the end. When I was on the phone call to my brother, Dad stopped breathing and I thought he'd gone (he had) and took a final breath which is apparently a reflex or something, so be prepared for that. It totally threw me.
I hope you are doing ok.x

LegoAcupuncture · 25/11/2013 14:03

Glad the GP gave you a sick more Viva.
Thinking of you and your family still.

Original poster
VivaLeBeaver · 25/11/2013 14:16

Everything I read says the breathing is in the last few hours of live but he's been doing it for days.

OP posts:
LegoAcupuncture · 25/11/2013 14:26

My DFIL had very laboured breathing for a day before he died, in his final hours the breathing was very very intermittent and I'd say the last half an hour he maybe had 10 breathes.

Massive hug for you, it is an awful thing to watch.

toffeesponge · 25/11/2013 14:31

I am also glad the GP was compassionate enough to give you a sick note without sticking to the rules.

I hope your dad is peaceful and without pain.

Has your brother come to be with you?

Original poster
VivaLeBeaver · 25/11/2013 15:22

He does seem pain free now but was in pain over the weekend.

My brother was here at the weekend and is back tomorrow.

Will watch out for his breathing becoming more sporadic then Lego, thanks. It's awful not knowing what to watch for though I know everyone is different.

OP posts:
LegoAcupuncture · 25/11/2013 18:25

Pain free is good, that's how you want him to be.

Talk to him, he can hear you.

DH and I spent almost all the time jibbering about our DC to DFIL, he adored them. The say before he lost consciousness we took the DC in to see him and he was very concerned that his hair was uncombed.

TiredDog · 25/11/2013 18:59

I'm glad you have been given a note to allow you to spend time with your father. It's a proactive thing to care for your mental health so perfectly acceptable It's really important to get this time right

Best wishes

Dumpylump · 25/11/2013 19:09

If there's anything you want to tell him, then keep talking, he'll be able to hear you. If you're happy just to be quiet and sit with him, then do that. Basically, just do whatever you feel is right for you and your dad.
I am so sorry you and your family are going through this Thanks

morethanpotatoprints · 25/11/2013 19:21

Hello my love, I can't say anything that hasn't been said, but wanted to send you my best wishes.
I have been where you are now and you are doing a fantastic job. Nobody would expect you to leave him on his own.
The only advice I was given was before they go they turn to face away and go into a ball like fetal position.
Also to listen for a wheeze when breathing, more like a rasp.
Finally, sometimes like my dad did they seem to improve and be quite ok before they die.
Keep telling him you love him and talking in general, he will be able to hear you.
Best wishes to you. Thanks

Original poster
VivaLeBeaver · 25/11/2013 19:23

Yes, we're talking to him and just sitting in the room and generally chatting so he can hear we're there. I've told him I love him several times.

I feel like telling him its ok to die and he can stop fighting it. But then I don't want to scare him if he doesn't realise he's dying. Maybe he's just not mentally ready to go yet? I'm worried he's scared and can't tell us.

OP posts:
LadyAlconleigh · 25/11/2013 19:27

Oh my love. I have no advice, but just wanted to say that I am thinking of you. I hope he is peaceful. Xxx

LegoAcupuncture · 25/11/2013 19:34

Viva, tell him. He may want to hear it, he may be aware of it already and scared to do it while you're still there.

hareinthemoon · 25/11/2013 19:47

I think my mum held on until I told her that we would all be ok and that she could go if she needed to ("go" was the word I used). It was quite soon after that that she actually did go. But it had been a few days of uncertainty before. There's no way of knowing, but I do think she was hanging on for us.

Thanks I hope my children do for me what you are doing for your dad, if we all get the chance.

toffeesponge · 25/11/2013 20:16

My nana slept for the last couple of days and died on her own. I was so cross no one had been with her but maybe she wanted it that way.

Take care seems so trite but I don't know what else to say but I am thinking of you.

StarlightMcKenzie · 25/11/2013 20:20

Oh Viva, I've only just seen this.

Take care. Thinking of you.

Rikalaily · 25/11/2013 20:24

My mum held on for a week after we were told she only had a few hours, the day that all five of us had told her that it was ok for her to go (none of us knew that the others had said it until afterwards) was the day she went. I think sometimes they hold on because they are worried about the people they leave behind.

It's ok to tell him if you feel that is what he needs to hear to be able to let go. I was worried about scaring mum by saying it but when she went she opened her eyes for the first time in days, looked at us and smiled as she went, I think that's because she knew we would be ok.

Keeping you in my thoughts x

LuisSuarezTeeth · 25/11/2013 20:25

Viva. I've been where you are, it's tough. Keep talking to him, even if it's twaddle.

I'm thinking of you and your Dad, I wish you both peace and for you, strength, resilience and comfort.

X