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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think my husband is gravely ill at the wrong time? Thread 2

610 replies

MyOtherCarIsAPorsche · 30/05/2022 11:23

Continuing from 1st thread.

OP posts:
Thread gallery
33
MyOtherCarIsAPorsche · 29/07/2022 07:37

thank you for asking

mixed

H is absolutely sending me round the twist. He's nearly set the house on fire twice. He is extremely forgetful - his head has completely gone. Of course I'm blamed for everything. He's utterly lovely then bloody nasty. he's waiting for an assessment of fitness, where he goes to a physio at the local cottage hospital - he'll find out how much exercise he's safely capable of. He needs some sort of psychological assessment more urgently. Even though I realise the extent of the changes and can put it down to the surgery - I don't know whether I can tolerate him long term. We also have had further spending splurges. He's admitted that he's no idea why the garage is so packed with 'shite' he bought earlier. I'm totally fed up with him being around the house during the day - criticising and moaning, turning his tv up to drown out the sound of grandchildren and ignoring everyone.

I keep thinking of an ultimatum but then it's never the right thing to do - he's too different and difficult and belligerent and arrogant and stubborn and such a nasty piece of work.

he's absolutely aware of this - he tells people I'm getting the brunt of his rotten behaviour and he knows that he's irrational. I'm sick and tired of apologies. You can't take back nasty words once they're said.

if it wasn't for the fact that I'm so busy I think I'd be a nervous wreck.

things have changed

OP posts:
MuchuseasaChocolateTeapot · 30/07/2022 00:16

I wonder if some sort of trauma counselling or psychotherapy would help you both?
You’re right, you can’t unring a bell and it isn’t sustainable to be on the end of erratic and mean behaviour. No life for either of you. It does sound like something needs to change x

Daisy95 · 13/08/2022 18:03

How are things going lovely? X

MyOtherCarIsAPorsche · 25/08/2022 16:18

@Daisy95

We are virtually back to 'normal' - apart from some obvious personality changes which materialised after H's surgery. There are days when I can't stand to be in the same building - never mind room, as him. He can be so aggressive and nasty. Other days he's his usual self. He has regained most of his weight and has a lovely tan, but unfortunately he has kept his new longer hair doo. He has nearly destroyed the house a couple of times and ruined a freezer full of food. (Left the grill on with the grill door closed, left food in the oven and gone out which was in flames when he got back, left the freezer door open.) He also flooded the bathroom where the water went through the tiled floor and poured through the light fitting and into the kitchen. We didn't know until he walked into the kitchen and slipped and fell into inch deep water.

He forgets vocabulary and gets frustrated describing the words he wants to use. He has poor short term memory and shuffles about looking for stuff that is in his hand. Some days he laughs at his own actions - other days he is a raging bull. It's not just me at the end of his temper - now lots of family and friends have experienced it and that makes me feel a bit better in a warped way. He always apologises profusely afterwards but I would rather he tried harder to reign it in as he appears to immediately recognise when he has been a bit of a 'bar steward'. He insists he can't control his 'explosions'.

We are still in separate bedrooms - which is fabulous. I have never slept so well. We are both enjoying our independence in that respect.

H has used his cement mixer and built a small wall around our daughter's front garden. He's in the process of collecting large cobble stones to sink into concrete in front of our garden wall (currently grass - dogs like to 'dump' there).

He's been to our caravan in Northumberland a few times - on his own and with family. I have not been in case I'm needed for babysitting (granddaughter aged two and half) in case the twins arrive.

He is exercising daily on all his new gym equipment and is trying to persuade me to use it. (He's not been fishing yet but has purchased a license. He has also added up how much he has spent since May and has told me to stop spending 🤔)

My daughter is now 36 wks pregnant with twins - she's being induced next Thursday. She saw a heart consultant (Dr B, at the royal house up high) today. She had an echocardiogram (she has sinus tachycardia) which was all good. Her 24 hr tape results which she had 3 months ago are lost. The consultant also said that he would organise testing for the whole family in case what happened to H is hereditary. She's been given the all clear with regards to labouring with twins. Twin 1 is very low down and head first. Twin 2 is transverse (been breech up until Tuesday night).

I am no longer working - which is great. It was the only thing keeping my brain ticking over though, so I'll have to take up crosswords or something to keep the brain alert.

I'm on standby for the arrival of the twins - every time my phone rings, the adrenaline rush makes me itch. I have knitted numerous blankets, cardigans, hats, mittens, bootees and newborn photo props. When I've finished twin things I am moving onto autumn/winter cardigans and jackets for our other grandchildren.

We are sorting out our savings and pensions, looking into making wills and putting our properties into our children's names.

We are looking forward to Christmas and are planning time blocks for large family holidays next year. I have contacted wider family we haven't seen in a good while and I am organising gatherings and planning on keeping in contact/visiting a little more regularly.

I realise that because we were so set in our ways/routines before this health scare, I was quite isolated/insular. We both enjoy the company of our wider family/close family friends and have such great times together when we attend the infrequent births/deaths marriages that I am determined to get out and live a little more. (Unless we all decide we can't stand each other in larger doses.)

We are making the effort to go out on most evenings wining/dining and local walks. Hopefully this is not short lived. We tried before and it tailed off.

We are at our daughter's this weekend (twins) for a large family gathering (unless the twins have other ideas).

We have faced our own mortality lately and in the meantime we want to just live.

@Fraaahnces
@olympicsrock

OP posts:
picklemewalnuts · 25/08/2022 16:45

Wow. What a long, involved and impossible situation you've been enduring.

FlowersBrewBrewBrewBrew

You sound much more peaceful than you were. I do hope you continue to see progress, and thank you for sharing. I had no idea such things were possible.

legosunqueen · 25/08/2022 19:46

How lovely to read your update, you sound much more grounded Flowers

icelolly99 · 25/08/2022 20:46

Lovely update thank you. I was just thinking about your situation today. Looking forward to hearing news about the twins.

Daisy95 · 26/08/2022 09:20

Lovely to hear an update from you. You definitely seem more grounded although it isn't quite as before.

How is your grandson with the seizures doing?
Can't wait to hear your next update about the twins!
Sending you lots of love

MidnightsFoodbowl · 26/08/2022 10:51

Oh @MyOtherCarIsAPorsche I'm so glad things are improving, even though your husband still has his moods! I've been following your story since the beginning, and can't believe what you've had to endure in such a short space of time - it has made me feel much better about my little inconveniences . Keeping my fingers crossed that things continue to get better, but please keep updating us! ❤

MyOtherCarIsAPorsche · 26/08/2022 11:39

@Daisy95
Thank you so much

Grandson is having a longer eeg on 15th September. They will use glue to stick the bit and bobs on his head and then they are free to leave hospital with a recording box. (He always pulls the wires off so don't know how long these will stay on.). They want to include a period of sleep in the recording. We think he has episodes in his sleep/related to sleep.

His episodes have changed - they're not daily now he can go a week without one and then have 10 or more the following day. They seem more random now. His bruises heal from falling and then he will get lots more. Mainly his head and face. His nursery inspect him for cuts and bruises every time he goes and record them so they know if he gets new ones in their care.

He has had episodes whilst in his high chair, with food in his mouth which is quite scary. He had an episode whilst having his hair cut, which shocked the hairdresser. We don't really know whether he's having absences (without falling and eyes rolling back) as he has periods of time when he appears 'engrossed' and ignores things going on around him. Sometimes it's as if he knows when he is about to have an episode and he lies down just before his episode. Sometimes he's running around and falls spectacularly when one starts.

We think he's very behind in his milestones - he's 2 in November and he's more like a 1 yr old. He has just started 'helping' when getting dressed - putting a foot up when putting socks and shoes on, trying to put his arms and legs into clothing. He is just beginning to understand things like 'shall we find your shoes'.

He still cries a lot - seemed to cry all the time from birth unless being held.

He has an epilepsy nurse now who my daughter can contact and send videos to - she has managed to get evidence of the period of time just before an episode. My daughter can catch more evidence now we think that he can recognise some of his episodes as he suddenly stops moving. He also appears to chew the inside of his mouth when he is more likely to have a series of episodes. He is grumpy when they are likely to occur. It seems cruel to grab the phone first instead of him, it feels very wrong to film him in this state. The nurse says that it's definitely some sort of epilepsy but I'm not sure if the diagnosis is official as there's no 'paperwork' stating this. He has only been seen once at the epilepsy clinic and they said they didn't have enough evidence for a diagnosis, despite him having several episodes in front of different health care professionals. They've not actually seen any evidence from the other eegs that he's had. I don't think he keeps the leads on long enough - he starts pulling at them the moment they are applied. The last eeg he had, he had an episode just before they started to put the equipment on. There is lots of video evidence now and my daughter writes down all episodes and duration now. The epilepsy nurse rings her roughly every couple of weeks which is good as she feels that they actually believe her now. She said that she thought she was 'going mad' until other people started witnessing them. It was as if no health care professional believed her at first, even though he had his first major episodes in front of two consultants on the children's ward. This has been going on since last Christmas (she thinks that they were happening long before this but wasn't sure of what to make of his episodes until I said 'do you think it could be 'fits' from what she was describing) - didn't think for a minute that it would take this long to get sorted.

He's sleeping at the side of me - if I stop patting his back, he'll wake up.

He's so bloody cute. A very handsome little chap. I'm quite concerned for his future - we still need to know about what's happening.

OP posts:
MyOtherCarIsAPorsche · 26/08/2022 11:47

Oh - about the twins.

My daughter didn't manage to get to sleep last night - she has irritable uterus and is used to having lots of tightenings. But they kept her awake all night last night, so possibly a little more painful now?

Hope not - it's the bank holiday weekend. She's worried the specialist staff will not be available.

She daren't move today - although the discomfort is less when she's not in bed.

OP posts:
olympicsrock · 28/08/2022 18:50

Hello OP
I typed you out a long message the other day which disappeared due to our internet problems .
so pleased to hear that things are all getting better and that DH is becoming less of a Wally.

i thought of you both a few days ago when I saw a patient with a similar story. He waited a week for someone to do a CT and diagnose the dissection.

I also thought of you when I saw this ( attached) and when I pass the tiny knitted jackets in our hospital shop.

glad to hear the babies and DD are doing ok.
much love xx always here if you need me

To think my husband is gravely ill at the wrong time?  Thread 2
MmeHennyPenny · 30/08/2022 11:27

Thank you for the comprehensive updates.
I have been following your story from the outset.
You impress me with your strength and phlegmatism.
If anyone can pilot their way through such stormy seas successfully then you will!
Best wishes.
x

MyOtherCarIsAPorsche · 01/09/2022 13:40

Daughter induced this morning - came home.

An hour later - rushing back to hospital.

Now in labour.

OP posts:
KeziaOAP · 01/09/2022 14:28

Hopefully not too long a labour for DD, how exciting to soon meet your new Dgd and Dgs and seeing them in all those lovely outfits you've knitted Flowers

olympicsrock · 02/09/2022 01:57

Exciting news! Xxx

Munchyseeds2 · 02/09/2022 12:49

Ho

Munchyseeds2 · 02/09/2022 12:50

Hope all goes well

legosunqueen · 02/09/2022 17:40

Best wishes

Daisy95 · 02/09/2022 19:11

Hope all has gone well with the twins. Can't wait to hear about them.

Just on another note about your grandson I just wanted to say I have epilepsy and I'm now 27 and lead a very normal life, drive am a theatre nurse and been seizure free for 5 years now.
The hardest part is the diagnosis, once they've established this you can start trialing medication.
Your daughter and yourself are doing amazing, I know from what my family have said how tough it is to start filming it's just not natural but you're doing everything you can to get him well. I really hope his appointment goes well on 15th.
Has your daughter applied for any carers/pip money or thought about that?
You're both doing so great.

MyOtherCarIsAPorsche · 03/09/2022 07:43

Twins are here!

During the night - Baby boy 6lb 4oz, baby girl 5lb 8oz (bottom first)

Mum and babies fabulously well.

@Daisy95 - will get back to you later 🥰

OP posts:
Daisy95 · 03/09/2022 07:53

Oh wow! Congratulations! Lovely weights for twins & one of each 🥰
Glad they're all doing well

PolliFlinders · 03/09/2022 08:10

Congratulations, lovely news.

Monsterpage · 03/09/2022 08:41

Such happy news. Congratulations x

KeziaOAP · 03/09/2022 09:47

Congratulations to you all Flowers