Storm Part 3 (for partners of people with cancer)

[Willowkins]

Continuing the thread, mostly supporting partners of people with cancer - just in case it's needed.

The previous thread is here

[Title edited by MNHQ at OP's request]

@Timesnearlyup Well done on dealing with sister in law. I hope you have enough support at home now, but don't be afraid to change your mind if things change. Glad the boys are home.

I think my dh went 3 days on minimal fluids before passing, he was only 57.

@FormerlyPathologicallyHappy Thank you for sharing this. My dh is also 57 😕. He woke and asked for yogurt, I gave him a few sips of smoothie & some ice cubes

@Timesnearlyup just wanted you to know you're in my thoughts

Thank you @MontyDonsBlueScarf ❤️ it’s been a hard day. Dh didn’t sleep last night.
I keep getting different advice/messages from the District Nurse Team vs the Hospice Nurse team and feel like I’m in the middle trying to work out who to call & what to do. A few nights ago the Carer called for help as dh was hallucinating & trying to get out of bed but when Hospice Nurses arrived they wouldn’t give anything as he had calmed down.m then I called for advice and was told I can give Lorazepam (pill), previously told not to but they wouldn’t add the medication to the pump. Also told he shouldn’t eat/drink (due to coughing), then told he could as he understood the consequences.
Now today he was confused and talking nonsense when District Nurses were here and even though he calmed down they gave home an injection and added the medication to the pump? He’s been very sleepy since, and also incoherent. I just feel very tired and confused and overwhelmed.
I keep thinking I can’t do this anymore but then think it won’t be much longer, but then think, maybe it will go on forever 😕

@Timesnearlyup I'm so sorry. If it's any help, my DH had about 48 hours from going into the incoherent/sleepy stage and he then passed in the 5 minute gap between his daughter leaving and the day staff coming on duty. Everyone's different of course but I'm sure it won't go on for ever. Though it's been such a long time for you I can see how it might feel like it.

I have a couple of thoughts for you.

If your hospice has a family support team, ask for one of them to contact you urgently and let them know exactly how you feel. You need help for you, not just for your DH, and that's what they're there for.

Both my DH and my father passed within 24 hours of being reassured that we'd be OK without them and if they were tired it would be OK to let go now. Make of that what you will but I understand it's not uncommon.

Finally I'd try not to stress too much about doing the right thing. Clearly there is no obvious single right thing, or you wouldn't be getting all this conflicting advice. The reality may be that there's nothing you can do that will make a difference to the final outcome so doing the best you can, with love, is perfect.

He's lucky to have you and I'm sure he'd tell you that if he could.

Thank you @MontyDonsBlueScarf i do appreciate the advice. Somebody else told me today they were told to tell the loved one, it’s ok to go.
Hoping for a better sleep tonight, he is a lot calmer and I’m so tired. I’m sure I’ll regret wishing it was over when it is but it’s just so hard & has been going on for so long and it’s so painful to see him in this state.
Will see what tomorrow brings x

Not sure if this is a good time but I thought you might like an update on my own cancer scare. I got the results of the biopsy on my lump and it's benign - definitely not cancer. They're going to leave it be but keep an eye on it. I feel very blessed.

That's great news @Willowkins

So pleased for you @Willowkins

So pleased for you @Willowkins - it's so much harder when you're the last man standing !

Really pleased to hear that @Willowkins
i have a sad update: my dh passed away this morning. He managed 5 weeks at home & got his wish of staying at home. It was a long and painful journey and he fought every step of the way. He deteriorated so much this past week, I think it’s a blessing now that he doesn’t have to fight anymore. So so sad though x

Very pleased to hear your news Willowkins.

My DP is in hospital - an infection started this week and he's been very ill. I hope they will send him home tomorrow - he hates AAU. It's noisy and overbright. But there's nothing of him - he weighs 47kilos and is simply fading away. I can't see him living very much longer.
@Timesnearlyup - I'm sorry... very hard. The fight and the pain is over but the loss is huge. ♥

@Timesnearlyup thinking of you and your boys. Take care of yourself now.

I'm so very sorry to hear this news @Timesnearlyup

@Timesnearlyup so sorry to read this, please make sure you take care of yourself at this time xx

@daffodilsandredwine hope DH gets home soon, my DH hated all hospitals and had to be really ill to even phone them.

@Timesnearlyup I am so sorry to hear your news, take time for yourself and remember we are here for you

@daffodilsandredwine I hope DH got home today, this bit is so hard to watch

We got home at about 9pm today. It was such a long day today - and so stressful. We saw the palliative care doctor who has told us it'll be a matter of weeks. I got two huge bags of drugs and some telephone numbers. I know the teams will all take a few days to get organised and it's Easter weekend - but this is daunting.

Now were home and I am horrified at how much he has deteriorated. He has no muscle tone, no strength and I realise I can't leave him alone - he's not safe. The bout of sepsis seems to have really taken it out of him. He could walk to the loo last week - he can now not do that without help. I'm going to have to think again about the care he needs.

I'm grateful for you and what's here - and sad that it means you've been through this too.

I'm going to get some sleep now.

Sorry, wrong thread. I don’t know how that happened.

@daffodilsandredwine when we got to this point I found a carer via Nextdoor to come in for a couple of hours every morning. The idea was to give me a break, but the carer was such a lovely guy that DH really perked up and looked forward to his visits. It was good for both of us (and also less costly than I anticipated).

Hope you can have a peaceful Easter now he's home.

Gosh @daffodilsandredwine i really feel for you. I’ve just been in a very similar situation. Apologies for not reading back the thread to see what your husband’s full diagnosis is. If the doctor said there were only weeks left. Did they refer you to a Hospice Team or District Nurses? I know from my experience the weekends are the worst and I was wondering how I would cope with the Easter weekend despite having a Care package. The Hospice team we had were really helpful and managed to arrange continuing health care for us. It did take a bit of time though.
you are in my thoughts this weekend, please call the numbers whenever you need help, I found it sometimes took hours for the Nurses to come on normal days.
Unfortunately it’s all very recent for me and I completely understand your distress. I hope you manage the long weekend. Call in any help you can get to get through the weekend. Sending massive hugs and prayers to you and your husband 🙏

Was just going to suggest the hospice team or at the very least a care package - you can't be expected to do all of this alone. You will burn out and you should be 'enjoying' this time, talking etc not burnt out and caring 24x7.

@notapizzaeater
@MontyDonsBlueScarf (PS - I love Monty Don!
@Timesnearlyup

Thank you for your posts - it really does help. And I know it's been hard for you too. X

Last night was better than expected - and I feel happier this morning. My daughter sat in the bedroom until 4am to give me a proper sleep in the other bedroom, ( I was exhausted after the hospital). I took over at 4 and slept with DH... waking every time he needed pain relief of water or just to shift position. But it was ok. (Reminded me of when the kids were little we co-slept a lot and they were both poor sleepers). It was actually quite a nice memory. And it was nice to see DH as DH again after days in hospital when he was just a patient.
We're just trying to readjust and put things in place now.

Just wanted to write - The hospice nurse visited today. She was lovely. So sensible and kind and practical. The district nurse was here on Tuesday and we now have a cushion and dressings for pressure sores, a clear idea of which drugs to give when, contact numbers, a urine bottle, (makes a difference), and a feeling of not being alone.

DH is very weak - can barely walk - yet still manages to get up for a bit. Weighs almost nothing... has no strength - but isn't in much pain thank goodness. We are working it out - and it's ok. My work have been good and I'm doing what I can from home. I like that as I don't want to just be here in the house with nothing to do but watch him die.

It's a strange time... and sad - but so far not frightening. I'm very tired... but I'm ok. Just thought I'd say that.