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]

Thanks to everyone for your really kind replies. Thanks for taking the time.

It's been a busy day. District nurse came out, one who specialises in Palliative Care . She also mentioned the tiny amounts of water syringed into the mouth which we tried earlier quite successfully. He's ok swallowing when he's more with it.

Have tried straws also toddler drinking cups, but when he's in that night time fugue state he just doesn't understand what to do. But the syringe works well, a few dribbles but not too bad. He's used to the syringe for his Oramorph top ups, so it isn't a new thing to learn.

i gave in today and let them order a hospital bed. Was worried about how I would fit it in our bedroom and then had the brainwave of swapping round bedroom and living room. So I've also ordered myself a nice single bed to lie alongside him.

He's still eating, mostly blueberries for some reason, and slightly melted ice cream. Fortified milkshakes and the occasional boiled egg or banana. That's about it, he doesn't seem to be able to chew anything. I couldn't shovel the ice cream and blueberries into him quick enough this morning ha ha.

Everyone is being so kind, downstairs neighbour coming up to help me get him onto the commode or chair when I can't do it myself, also drying lots of sheets and towels in their machine for me. My boss is picking up my single bed from Argos for me tomorrow so everything's ready for when the hospital bed arrives and both beds go into the living room.

He was completely out of it earlier and I nearly shouted at him trying to get him to sit up on the commode and not fall off. Not shouting exactly but just having to talk to him loudly and clearly to get him to pay attention. I apologised afterwards to him and he looked at me and said "I know you're doing your best". So he's still in there. And still very very loving to me which I am so thankful for.

Thanks again to everyone who replied. I'm so sorry that so many of us are in the same boat.

Thanks

Once we get to the bedbound stage I will message you for that information re bowel movement in bed. Thank you

@certainagedwoman it sounds like you are doing an amazing job x

@certainagedwoman my DH ate lots of jelly and for some reason crunchy nut cornflakes. He also liked squirty cream with his jelly.

I gave up on trying to do food that fitted meals, ie eggs for breakfast etc, I just had all sorts to hand and he had jelly for breakfast sometimes.

Thank you.

People keep telling me that, but I feel like I'm just about scraping through. It's so hard to know what to do a lot of the time.

But I love him so so much, the last thing I ever do, I will look after him and keep him feeling safe and loved until the end.

My darling husband died just after midnight Sunday morning.

He had deteriorated a lot that morning. It was very difficult to get him to take his pills and to eat safely. He tried to talk to me but was mostly incoherent. It was heartbreaking. And then in the late afternoon I lay down with him and he seem to push through the confusion. He said my name, told me that he loved me, and kissed me, over and over. I told him how wonderful the last 20 years with him have been, how much I love him, that I don't want him to leave me but that I know he has to and I will be with him loving him and keeping him safe forever.

He then went to sleep, with noisy breathing. Just after midnight I kissed him good night and noticed that he's breathing was no longer so noisy. I then realised that he had simply stopped breathing in his sleep. That he had gone. At least, despite everything, his ending was as good as it could be. He managed to fight through the confusion and we had around an hour of tenderness and love between us and he left with no drama and no pain.

The funeral director collected him around 9 pm. I couldn't let him go before then. It was like he was just sleeping in the bed.

I have no idea where I go from here. I can't imagine how I begin to live my life without him.

@certainagedwoman what an amazing gift you were able to give each other and what a blessing at the end for both of you. So much love. That will carry you through, somehow. Thinking of you.

@certainagedwoman I am so sorry for your loss, you gave him what he wanted to be home together and you had a lovely conversation, treasure that.

be kind to yourself is all I can say, I’m two months ahead of you, you need to recover physically, I think yesterday was my first good day, I’ve spent a lot of time on my sofa, napping as well as sleeping all night, recovering mentally that will be another thing but it will happen. Big hugs, thinking of you 💐💐💐

Thank you

Managed to get about 5 hours sleep last night. My eyes ache from crying.

Have you people around you ? Lean on them.

How lovely that he was lucid enough to share precious memories with.

You will keep going because you just 'do' but make sure you are looking after you at this time. If I know anyone who's died now I cook for them, in the first few weeks I didn't have the brain space to think of food.

Those last moments together can be so precious but also so awful.
You've been amazing. It's okay to put yourself first now even if it's just a little bit to begin with.

Thank you

Picking up the death cert today. Didn't think I'd ever say those words about my lovely lovely man.

@certainagedwoman sending you big hugs, collecting the death certificate was the beginning of making everything real for me.

Ongoing you are going to be doing so many things you didn’t think you’d ever be doing and it’s tough. As my friends and family keep saying to me, you don’t have to do everything at once. So just take your time and do the things you need to do and find time for yourself when you need it.

Thank you

Unfortunately, due to bad timing, neither my sister or my brother are able to come to the register office with me today m. But everyone kept telling me I must have someone with me for moral support. So I asked a neighbour who I am friendly with, rather than an actual friend, if you see what I mean.

And then this morning I thought, what am I doing? I don't want her to come with me. I would rather be on my own. In truth, the only person I want to come with me is my husband and that's not possible.

So I messaged her and told a white lie, I told her my brother was able to come with me after all.

Everyone is being so so kind and supportive, but sometimes I just need to be alone

It is OK to want to be alone, I had family stay for a week afterwards but was glad when they went home so I could just sit on the sofa and do nothing without feeling guilty for not hoovering or starting to sort things out.

I was pressurised to have some go to get the death certificate which I went along with but I went to funeral home to sort the arrangements on my own which family thought I shouldn’t do, it was fine, yes I cried but I was OK to be there on my own.

so if you want to be alone, then be so 💐💐💐

Thanks. Yes, I went on my own in the end and it was fine. Obviously not a particularly enjoyable experience but had to be done and I'm glad I didn't have a very kind but random neighbour with me.

I registered dhs death on my own too. The registrar was very good and it didn’t take long.

Arghhhhh really struggling. At home I’m fine, go out and I’m a mess.

went to the tip on Wednesday had a bag of some odds and ends of clean crap left over from nursing DH, I chucked all sorts but this one last bag with basically some brand-new pads and toiletries et cetera, which were all in a box which in turn was in a very thin bin bag got taken from my hands as I was just about to lob it. Man said there’s cardboard in there, and I said I know but I need to throw it, he was quite insistent that I couldn’t, so then I just burst into tears told him my husband died and this stuff was just all things that I couldn’t deal with, and bless him he threw the bag in to the big skip for me and then apologised.

But the damage was done and I spent the rest of the day sobbing.

driving down the road I found myself behind a car at the traffic lights exactly the same same as DH‘s car and it reminded me of all the times I used to follow him to our place of work. I was actually on my way to that place of work so it really threw me.

I feel it’s safer to stay at home, but I really know I need to get out.

i’ll just get this odd feeling in my stomach and my chest nothing like I’ve ever known before.

You get all sorts of problems. I spent a long time worried about custard.

It passes, I stayed in I felt closer to him and I can go out ok now.

Actually @Hisredipad I'm proud of you. You completely disarmed a man who was insisting he knew best. Okay you had to burst into tears to get your point across but that says more about him than you.
Unfortunately you can't completely avoid the things that cause you emotional distress. And I think they can help with healing in the long term, painful as that is.
You reminded me that I also went to the tip this week and took an ugly vase that MIL had given us 20+ years ago. It gave me great joy to smash it into the hardcore and rubble bin.

@Willowkins , thank you ❤️

I’m feeling much better today. I’ve also decided to just work stuff into the rubbish/recycle bins at home and try not go to the tip again (well at least not for the immediate future).

you made me laugh about the vase, I was a bit brutal and lobbed a few things DH would have probably got annoyed about and thought life is far too short to be messing around trying to sell things that probably no one wants (although I did check on eBay that none sold for a lot of money first).

It’s quite a big wedding anniversary today. The kids sent me flowers which was lovely considering they’ve never celebrated our wedding anniversary before. My parents have always celebrated our wedding anniversary have not been in contact at all.
I’ve just spoken to my daughter and she said that my mum is too scared to ring me in case she says the wrong thing.

I went and got DH’s ashes today, I’ve been meaning to do it for weeks but life has just really gone silly and parking at the funeral home is very difficult as I found out trying to pick him up. I drove him round the town mainly trying to avoid the traffic and had a little chat. I’ve put him in the unit in the dining room for the moment as I’m not quite sure what else to do, we are going to intern his ashes in a family plot later this year.

I went to the garden centre yesterday and I saw this really nice thing that I know. DH would’ve bought me as an anniversary gift if I had made mention of it so I bought it myself as a gift from him to me.

I thoroughly approve of gifts like that. I have a super duper pair of Japanese secateurs that I would never normally have bought, I got them as a gift from my DH on my first birthday without him. I think of him every time I use them.

I have contributed to this thread a couple of times but it has been a while. Me and my DP (now DH) got married in Jan 24 in Vegas but unfortunately within 2 weeks of being home we were told that the cancer had returned (or not all removed). Last year was mostly spent having chemo which helped but unfortunately it’s not operable due to the location. We did discover this year that it’s eligible for SABR radiotherapy which he has just completed so back into the waiting game for a few months but this is the first summer in over 5 years that he’s not been having chemo every 2 weeks so we are going to try and make the most of it.

One thing I have really struggled with in the last year is stress and anxiety. I have normally coped quite well up until a year ago but ended up have counselling with MacMillan which was really helpful, however didn’t really solve the fact that I couldn’t cope with my husbands anger and depression for which he won’t get help for. I have recently been put on HRT due to being peri which likely explain why I struggled to cope with him so much, and I’m already starting to feel my self a bit more which is good. Does anyone else struggle with their DP’s depression and inability to cope with what they are going through?

@bookwormcrazy sorry can’t help but I got loads of support from the local hospice and was a safe space to ‘offload’ - my DH talked to them to and helped him.