Still the storm

[Willowkins]

Continuing the support thread - mostly for the partners of people living with terminal cancer - www.mumsnet.com/Talk/life_limiting_illness/3266385-The-calm-before-the-storm?pg=10

DS has decided he is not going back for his second year at Oxford in October - he is going to ask to take a year off, which is something his tutors had suggested earlier. He has had loads of vacation reading and essays but his ability to focus on anything is completely shot since things took a downward turn with DH. DS has been able to mostly disassociate from what is happening, but since his dad became mostly bed-bound and incontinent and needing pretty much constant care it has not been possible and he is finding facing the reality really hard. He has really stepped up but at some cost to his own mental health so a year to get things straight will be a really good idea, I think. He would probably have had to work from home next term anyway because of the covid risk (assuming his dad is still with us in October - we have no idea if that will be the case).

We have been getting care in place this week. Continuing Health Care have allocated quite a lot of support and the day carers are great, but the waking night carer (we get two nights) was pretty useless, so we have asked for someone else. Otherwise, we are trying to find a balance that gives him the needed support and us some sleep. Still very much a work in progress.

I am a bit calmer today as DH managed some sleep last night - he was awake all night with the useless carer, and all the following day, by then in a state of psychotic rage (he was polite to the carer, but raged at us). We have tablets for this but nothing was really working. It is all pretty difficult, but managing one minute at a time. Not really trying to do anything but cook, sleep and endless rounds of washing sheets on top of the care. Luckily on annual leave at the moment.

@SchrodingersKitty we hear you, we see you, sending you the strength to endure xxx

Two completely sleepless nights with DH in a row. He is now extremely paranoid and thinks I am throwing him a celebration but cruelly pretending not to - or something like that. He is full of rage and confusion and it is extremely hard to deal with. I have anti-psychotic and anti-anxiety drugs I can give him when necessary, but I now feel I am throwing them at him at random as his mental state is so odd. They barely seem to be touching the sides anyway.

I suddenly feel really out of my depth. I am beginning to think that we need to think about him moving to the hospice, even if we will only be allowed to visit for three hours in the afternoons. I don't think I am going to be giving him the best care from now on. DS is adamant that he should stay at home, though, so I don't want to make things harder for him. (He is helping with the care, but only about four or five hours, while the other 20 falls to me). This is so much harder than I could have imagined.

@SchrodingersKitty that sound so hard. Did you visit the hospice when he was 'ok' - I'm tiptoeing DH towards them.

We discussed this week that at some point he might need the dining room converting into a bedroom to save going upstairs. Drip by drip by drip.

Our hospice take people in to stabilise them and get pain etc under control then send them home - is that an option ?

@notapizzaeater: we haven't seen the hospice as it has been in complete lockdown until recently. It is reputedly very nice.

DH was very anti turning our sitting room into a bedroom and made me cancel the ordered hospital bed at first. Then three days later he agreed and he has barely been out of the bed since. It has all bee so quick.

It might be possible for him to go in for respite (for us), but he is not in pain so there isn't really the need for that - maybe to get his confusion meds more sorted, but then he might well get more confused not to be at home, so it is very hard to see what's best.

@SchrodingersKitty our hospice have a 24 hour support line - I'd speak to them to see if it is something that could help with ? It's so hard to know what to do for the best.

@notapizzaeater - our main support is our assigned hospice nurse, but they have us on home hospice - during lockdown they basically tried to have almost everyone looked after at home rather than in the hospice as they couldn't allow visitors except right at the end of life. Now things are a bit more relaxed it looks like more of an option, but they would need to get some extra carers via Continuing Health Care as they can't offer the sort of 24 hour care he is needing at the moment.

So it is a case of trying to find the right moment when he would be better off there than at home - or the moment when we simply can't cope any more. I expect we'll recognise it when it comes.

Our new night carer just arrived and she seems calm and competent unlike the first person who was assigned to us - so I may actually manage some sleep tonight.

@SchrodingersKitty hugs for you, it all sounds so hard 😢 I hope you had a good rest last night.

Dh had his port fitted today, it took longer than expected as he fainted twice. They should have sedated him, I wasn't even allowed in the hospital doors.

His oncologist sent through his scan report from when he was in hospital 7th August, it's even worse than what they told us 😭 I wish I hadn't read it now. His left lower lung has partially collapsed due to the number and size of tumours, that's where the pain is so it makes sense. Why didn't they tell us and why aren't they doing anything about it?? He's been sleeping around 16hrs a day for the last week, I'm terrified chemo next week will be to much. He went to bed last night at 19:30, I woke him up at 07:30 for his appointment. We got back at 11:45 and he's been in bed asleep since. This is fucking horrific, I'm not sure I'm strong enough for this.

@loubieloo4 you are strong enough ! It not fair but we have to be, I know my DH would fall apart if I panicked, he needs me to be on an even keel. I offload onto my friends.

The port sounds horrific, I know when my DH was in hospital last week there was a bloke in having horrible side effects and he was quite relieved that that is t an option.

@SchrodingersKitty And @Frikonastick hope you doing as well as you can.

The Pallative nurse phoned last week from the hospice last week and my DH is going to give the men's virtual group a try. This is huge, up until a few weeks ago he was totally against anything to do with the Hospice.

Things have got very bad. DH has been extremely paranoid and full of rage. He seems to believe in a different conspiracy theory every day and that I am evil and lying to him. The real world is an illusion, etc. All very Matrix. He had two serious bouts of paranoia today. I called a paramedic to administer an injectable drug for agitation. It worked for a few minutes then he raged none stop for an hour. I called the hospice and they have decided to admit him for a week or two to stabilise him, and then plan to send him home again. More nurses came out and gave him a larger injection and he may now sleep. My stepson came to be with him tonight, so I can actually sleep for the first time since 6 am yesterday morning.

Both DS and I so worn down that our reaction to the hospice news was just - thank god, now we can sleep.

Lurker here... @SchrodingersKitty IME hospices are fantastic places who can really get on top of pain management and other symptoms. They will support your DH but also you as his family. You are allowed to feel relieved at that respite care. It is all so very overwhelming. Sending lots of love.

@SchrodingersKitty it sounds like a waking nightmare, I’m so sorry it must be just traumatic for you and your son. I’m so glad that hospice will take him and I am wishing you hours and hours of sleep and respite xxx

@SchrodingersKitty that's currently the best place for him, they can help get everything under control and you can get some much nEeded sleep. It's the airplane adage, you need to take care of you first to enable you to take care of him. Take care x

Thanks All. I'm just back from visiting him in the hospice. He was quite calm and peaceful and dozed most of the time we were there. He had apparently had quite a troubled night but it sounds like it was less disturbed than the nights he's been having at home. Then I spoke to the consultant in charge, who was pretty negative about their ability to do much. She seemed oddly aggrieved, which I didn't quite understand - whether it was at me or the cancer or the fact that he'd been admitted. She kept making it very clear that he could not stay there long term. The plan seems to be to try massively increasing the steroids to see if that helps anything and if not, to massively reduce them. Either of these may or may not help with the paranoia. She and other professions keep saying the problem is to deal with the paranoia and delusions without sedating him too much. I say please sedate him - he really needs to sleep. Anyway, we'll see how it goes over the week. If they can't do anything they seem to be thinking that a care home might be the next step. I am really unclear from all the information online about whether Continuing Health Care would fund all or part of this. I expect I'll find out. So left feeling rather flat and guilty and odd. She asked if I thought he had any quality of life left, and I said no I didn't think much over the last three days, but probably he did before that.

Coming back into the house I just really wanted to talk it all over with DH. His physical absence gives me a chance to miss the person he was, which was not really possible when he was upstairs demanding things and pissing all over everything. Perhaps it is good to start getting used to his absence, though.

@SchrodingersKitty I’m sorry you came away from the hospice feeling guilty, you really really don’t deserve that. Have you managed any proper rest yourself?

@SchrodingersKitty don't don't don't feel guilty, he's in the best place, you can have some relief and some quality time with him without the stress, let them take some of it From you. Hope he and you have a better night.

We've results of lung/chest tomorrow, brain in 2 weeks, dreading it, I can see he deteriorated quite quickly.

We've had mixed results, the lung is stable but they've mixed results from the local hospital MRI. We've a better MRI booked on the 6 th at the cancer specialist hospital which will give us more answers. DH has developed a tremor in his hands so it will be an anxious 2 weeks. He on the other hand just heard the good stuff ......

@notapizzaeater: I'm so sorry to hear about the uncertainty with the results and the need to wait for more. The endless waiting and uncertainty was almost the worst bit for me.

Thanks for the support, guys. Things feel - and are - very strange at the moment. i keep hearing from the hospice that things have been difficult, but he actually sounds calmer there than he has been at home. They want to get a legal agreement that they can treat him against his will, which I have agreed to, though I don't think he will object. They are thinking that they probably do need to sedate him for a bit, though not enough to knock him out. They have said that I can be there longer than the 3 hour afternoon visiting slot if I want to and if it calms him. I can't say I'm leaping at the opportunity, as the rest feels very necessary. I'm not sure my presence makes much difference to him but I'll see how he is when I go in this afternoon.

I requested brochures from some local nursing homes to begin the research on what is available and I have been inundated with selling phone calls from a number of them, wanting all the details of what care he needs, which I really don't know yet. It has rather put me off a number which looked promising.

Basically, everything is very up in the air and I feel very lost. DS is being very withdrawn and not really communicating at all. It is all really lonely.

@SchrodingersKitty I get the loneliness, I do xxx

@SchrodingersKitty @Frikonastick I'm just on the end of a phone if you want to talk ......

Unless you are in this nightmare it's hard to comprehend 😭😢

@SchrodingersKitty I'm so sorry you are fighting for dh to be in the right place, how dare they make you come home feeling guilty 😡
I'm so cross for you.

I'm also here @SchrodingersKitty the guilt is so very normal, I felt such relief and guilt when DH was admitted to hospital for final two weeks - it was all too much at home. @notapizzaeater thinking of you too, the endless tests / results and for DH operations / procedures were all so stressful. It all just so bloody stressful and lonely.

@notapizzaeater I hope the mixed news turns into stable with the new mri.

@Frikonastick how are you holding up?

Our eldest dd graduated with a first in primary education last week. One of the first things she said to me when we found out how ill dh was, "daddy won't get to see me graduate" well due to covid (😡) all ceremonies were cancelled, so we held our own ☺️ we are so flipping proud of her, how she has even managed to get up and go to uni this past year amazes me let alone to get a first!

Dh starts chemo again tomorrow, he is all ready in a state due to having his port messed with for the first time, I managed to get some numbing cream from the chemist along with his diazepam I'm hoping he won't suffer to much. Obviously I can't be there which makes things worse. I'm shitting myself that something is going to go wrong and he will have an allergic reaction or similar 😭
I don't feel any kind of hope this time round 🤷🏼‍♀️ don't know why, maybe it's because there is more cancer this year than last.....anyway happy times on Saturday🎉

@loubieloo4 the photo is priceless 😍🥰

Fingers crossed for you x

Honestly it feels like we're in a carry on film some days!

Got to the oncology unit at 10:30, DH's chemo hadn't arrived so he had to wait around until it finally arrived at 13:00 😡 when that had finished they needed to give him a bolus of the 5fu before connecting the chemo he comes home with. They lost the bloody 5fu injection. It was eventually found at 16:00 in a BIN. They let me in at this point so we could speak to the senior pharmacist, the injection was in 2 sealed bags so they were happy to give it. They wanted to make sure we were happy for him to still have it. He did and finally got home at 18:00 😖 oh and his tumour rakers (CEA) has gone up again 😢

He did great though, the port seems to be the best thing for him, slept really well and feels ok today 👍🏻