Heartbreak by a thousand small cuts

[PlantPhoenix]

DH was admitted to our local hospice on Friday. He has terminal brain tumours. His short term memory is not great and he is really confused, not dissimilar to dementia.

He's just called me. It was so nice to answer that call because he hasn't shown any interest in his phone for a couple of weeks. He sounded almost normal when he greeted me. And then he started talking about going to work. And asking where I work. And didn't ask about the kids. This is so fucking painful.

@PlantPhoenix

Not at all, it’s really helpful to have your insight. I want to be sure that we do things as he wants and now I know that we need to talk about the future sooner rather than later. I’d be far more upset if he started to decline and I didn’t say or do all the things I wanted to while he still knows and understands me.

It is shit 🤗

A doctor has just been to assess him regarding deprivation of liberty because he keeps saying he wants to go home. DH completely lucidly explained that he was in the hospice for care due to brain tumours but now he was better, was able to care for himself, remember his tablets. There was me, horrified that the doctor would decide they couldn't keep him. Then the doctor said he was just going to ask me if I agreed and DH announced "That's not Plant, she's some other woman". Which made me cry lots but at least convinced the doctor that he needs to stay at the hospice.

@PlantPhoenix
All i can offer is a virtual hug.
Thinking of you and your family.
It must be so bloody hard.

And I'm still here. Had such a distressing visit this evening. He's gradually declining and was really distressed because he doesn't understand one of the procedures they've put in place for him. I had to leave even though it was the most awake he's been all week because it was too upsetting.

People keep asking how he is. "Not in pain" isn't really a positive is it, when everything else is a problem?

I'm so so sorry @PlantPhoenix

I'm so sorry. It sounds like a horrendous situation for you all. Sending you a hand-hold.

I'm so sorry.
My brother went through this. One of the benefits of him going into hospice care was their wonderful care and support of his small children (3 under 10s). As a result the children understood and dealt with what was happening at a very simple direct level. It was a blessing, a huge relief to him and his wife, and I've always been grateful for that.

When conversation is too hard then no longer possible, just the sound of familiar voices will comfort him, so take something to read aloud to him, (poems are good, not too long) record daily messages from the children, friends etc. Sing to him, play his favourite music.

should have added; take some light cream and use a little dab to gently massage his hands and forearms. Repetitive touch is very soothing. If he can turn over, give him a back rub.

The hospice are being great, as are the kids. We've been playing some of his playlists and blowing bubbles when we've visited.

But tonight was really hard. I know he's dying, but I knew 8 years ago that his time night recur, I knew four years ago he would eventually die from it, and then at Christmas we knew he'd likely due before the 2022 was out, and then he declined horrendously 8 weeks ago so I cried and cried. Then he rallied for a week. And 5 weeks ago he went to the hospice so I cried. And I sobbed and sobbed on Wednesday because he'd declined again, and had the " you can see it, can't you" chat with the nurses. And then today. I'm so tired.

His tumour might recur...

I am so very sorry xx

I'm so very sorry for you all. The emotional pain sounds almost intolerable. I hope you have friends and family to give you help and support.

I'm so so sorry. It's so unfair.

I have no advice but I just wanted to say how truly sorry I am that you're going through this. I can't even imagine what you're going through. I really hope you've got family and friends supporting you at this extremely difficult time xx

I am just so really sorry OP

I am glad he is in a nice hospice, that’s about all I can think to say.

Please do try and take care of yourself in all this

Sending love ❤️

It's awful. It is truly awful and you are right, "Not in pain" really isn't a positive in this case. Life is very cruel to those who least deserve it. Are you having support from the hospice too? I was offered Living Grief counselling when DH was dying (I didn't get to use it as he died the week I was supposed to start), I did find though that they really understand in a way that others don't.

A lovely lady visited the hospice when my brother was dying of a brain tumour, she did Reiki Healing - it's a very gentle hands on homeopathic treatment. She just massaged his hands and feet and said some nice words.

Above all else it is calming, a bit ethereal and so restful for both the person dying and their loved ones. I found it comforting seeing my brother at peace. He died 2 days later, and I will never forget the lovely Reiki lady who gave him comfort in his final hours of life.

Stay strong @PlantPhoenix you can make it through, it's a terrible time for you and your DH ♥️

I cannot begin to imagine how hard this must be........ seeing him while the real him has already gone...

I'm so sorry for everything you are going through, it's just not fair. We can see from your words how tremendously brave you are. I can't even imagine the pain you are and sending lots of love. Not the same at all but when my HIL was in a similar situation, we managed to take him out of the hospice for very short periods of time (with oxygen, pain meds, a catheter and wheelchair in tow, they managed to make everything portable somehow) for short walks which really helped us all, getting some fresh air and just a bit of time to be in the moment. I know these are some of the memories my DH tries to hold on to. Not sure if this is an option at all for you.

*FIL

Sending you strength ❤️

Thinking of you @PlantPhoenix

@PlantPhoenix how are you Plant? I was just thinking about you.