Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

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
Limetreee · 07/01/2023 11:06

Happy new year to you all. Hope this year brings at least good health to you all 🤞 Take care of yourself.

MyOtherCarIsAPorsche · 07/01/2023 11:31

Hi @Wallywobbles,

I'm still here, lurching from one crisis to another.

Completely torn between the generations.

Mum was 'out of it' for just over a week in hospital. (She went to hospital on Tuesday morning and eventually got a bed on a ward Thursday morning after spending a day in an ambulance and a day in A&E.) She was in hospital over the Christmas period (15 nights) - my brother fed her at lunchtime and I fed her at 6pm. Then she seemed to get better - she was eating and drinking like a trouper. She came home Tuesday (she lives with my brother). No one told him she was coming home - he wasn't home. The ambulance rang me and asked me to to come and let them in. I drove 45 min (with two grandchildren) and by the time I got there my brother had turned up (he'd been to the supermarket). Now she's back to where she was when she went into hospital - wheezing and not eating and drinking. She's having hysterical episodes of laughing and crying - which is scaring my brother. I can't visit at the moment. She was put on a fast track protocol for discharge? Which means continuing care provided by NHS? It wasn't explained to us.

I've had more than enough episodes of silent treatment from H over the Christmas period to last me a lifetime.

One daughter is giving me silent treatment because I have not visited due to the fact I am looking after my other daughter's children as my daughter and her youngest child (and my son) have croup. My daughter is much worse than her son and has been in bed since Wednesday. Her son spent the day in hospital on Tuesday after a series of seizures due to high temperature because of croup.

My son also has the same and had two days in bed. They are both coughing up blood (from the throat) and having lots of nose bleeds (both on antibiotics). My son feels better today but my daughter is still in bed - not functioning so I still have her children at her home. I think my daughter is depressed - well I know she is. There was a huge row (H) last Monday about who was looking after her children when she started with fever - her father said he could have two children but wouldn't have the third for all the tea in China as he is 'retarded'. He was so cruel and vile - shouting and throwing things in front of everyone, including the children, they were scared. (Complaining that he shouldn't have to look after anyone - it's him that needs looking after.) This upset everybody so much that I decamped to to my daughter's house and I have been there since. My other daughter is incensed that I didn't go to her on her birthday as previously arranged because I was looking after the children - hence more silent treatment. My brother is not speaking to me because I can't visit mum - I wouldn't go because of the risk of passing this virus (I don't have symptoms but surely I must be carrying the virus?).

My daughter who is ill expressed a wish to go to bed and not wake up ever again. This was triggered by her father's comments. She feels like she is drowning being on her own with three children all on waiting lists for diagnosis. Her six year old has suspected autism (my daughter is diagnosed) her 3 year old is non verbal and waiting for speech and language input. Her just turned two year old is having regular seizures (made worse with illness). She was 'shouted at' at the hospital for taking him there in her car in post ictal? state. The GP had told her to as it would be quicker. I couldn't go with her because I had her other two children and H didn't want to know/help.

My head is spinning and I don't know which way to turn. I feel demented myself and cannot rest/sleep. I daren't go to sleep because the nightmares are even worse than my waking hours. I spend the night watching tv and knitting to pass the time.

In order to be a little proactive I have made an appointment to see a private paediatrician for my daughter's youngest. This is in February as, apparently, there is huge demand for private appointments at the moment. I wonder why 🤔
He's waiting for glucose monitoring and an MRI on the NHS and if I have to pay for these tests then I have to pay. His condition remains undiagnosed a year in from seeing a consultant (which we waited 9 months for as he was referred at 3 months old because he was constantly crying and thrashing about, which we now recognise as seizures and the resultant behaviours afterwards). As he is getting older we are seeing patterns of behaviours where we can now predict when seizures are going to happen and recognise behaviours after seizures are due to feelings of confusion and frustration. He shoves himself along the carpet with his head on the floor, rubs his head against hard surfaces, holds his head in his little hands - so we assume he has severe head pain quite frequently. He has zero communication, does not say a word, he indicates hunger and thirst by taking your hand and taking you in the kitchen. He can come across as 'naughty' (don't like that term) but this is obviously explained by his huge health needs which are completely unmet because we don't know what's wrong with him and it's a 24hr job attending to him. My daughter can be up all night with him and she still has to go to work. She's at a crisis point.

And from my point of view - I'm at several crisis points. H, my mum, both my daughters. (Both because I have always divided my time between them with regards to childcare to try and be equal and fair. But it seems that I'm not getting that right at the moment.)

Something is going to blow and I feel that it is not far off.

What a bloody mess.

I need to go to someone deserted and scream for a very long time - just to clear some space in my head.

This is my life.

OP posts:
nameoftheday · 07/01/2023 12:11

Oh, OP. Have been following from the beginning and had hoped for a better update. How indescribably tough for you.

Apologies if this is a stupid suggestion, or one that led nowhere previously, but have you tried accessing Social Sevices for some support for your mum/brother, your daughter and/or yourself?

(((((((((MyOtherCarIsAPorsche))))))))))

MmedeGouge · 07/01/2023 12:30

I am so sorry to hear of your current situation. Of course you must realise that certain members of your family are not being fair to you.
You have coped so marvellously throughout all. You are a survivor. Hang on to all your coping strategies- your creative handiwork etc.
If I were you I would not be able to cope on so little sleep.
I wish there was some way of suggesting something that could enable you to put everything out of your head and give you some peace for a few hours in the night. Maybe someone, more wise than me will suggest something.
Families can be such a trial. I too feel like I’m the lynch pin, juggling the needs of three generations.
You have my sympathy and support- for what it’s worth.
Chin up!

MyOtherCarIsAPorsche · 07/01/2023 13:02

Hi @MmedeGouge

Yes - my brother has social care for mum. Two carers 4 x day. He also has respite - who never turn up.

Our HV referred daughter to portage at the beginning of November when she approached them for support - heard nothing.

It's all just come to a head because of this bout of illness. My daughter has no one to turn to other than me, which in turn leads me to be forced to drop other commitments.

Whilst I think she likes some aspects of being a single parent - she realises that there's no one there when she drops the ball.

I feel so sorry for the single parents estranged from their families. It's such a hard slog. We realise there must be some people juggling work and children who have no one at all to rely on. So we know we are managing.

My husband is not there for me - when I need support, there's nothing.

I'm at my daughter's house fantasising about not going home. In the meantime H is ringing and asking when I'm going back like nothing has happened and the answer is always 'soon'.

There's nothing more to say.

At the moment the children are occupied with a delivery from McDonald's and I have my feet up. My daughter is in bed sleeping.

I have another three loads of their laundry to do.

Onwards and upwards - to avoid the vacuum of doom.

OP posts:
notapizzaeater · 07/01/2023 13:10

It sounds horrifically hard but you really need to take time for you too, you are as important !

birder · 07/01/2023 13:22

How's your blood pressure these days OP?

Pottedpalm · 07/01/2023 13:36

You are amazing. Wish there was some way of helping. X

MyOtherCarIsAPorsche · 07/01/2023 14:05

@birder

It's funny you should say that.

It's possibly on the low side.

Been dizzy on standing much worse than usual.

On New Year's Day I was just about to step into the garage and went dizzy. I fell backwards trying to stop myself falling forwards and landed on my bottom. I think I got up quicker than I fell down - didn't know if anybody was looking as we had a house full of people for grandson's 3rd birthday.

Thing is, I had an MRI on hip/pelvis at beginning of December (no results yet) because of pain in that area. Since fall there's pain on the other side which has altered my gait again. I try to disguise my limp when walking, but very noticeable if I have to run. I can't sit in the same position for long and I'm always fidgeting to get a comfy position to sit or lie down. It's constant discomfort and sometimes excruciating pain if I've done a lot of walking. My ankles trap ligaments several times a day which is unbearably sharp, my knees hurt, my wrists hurt/are very weak and my elbows are painful (carrying/straightening/putting pressure on e.g. cutting a sandwich gives me elbow pain). And not to mention this last three years of two frozen shoulders - one of which is still sharp and painful. I have about 80% range of movement in my good shoulder and much less in my right shoulder, my dominant side.

Both my daughters have EDS hypermobile form. I'm wondering if I'm the source as my knees still sublux all the time. Unless of course they got it from their father and his aortic dissection is related.

Anyway, what with all of that and my VSD, I need rubbing out and drawing again - as my nana used to say.

OP posts:
olympicsrock · 07/01/2023 22:57

Your nana had a good turn of phrase. It is probably both of you and just Sod’s law that you ended up together. ( or did you bond over crazy moves on the dance floor?? ) .

I’m glad to hear from you even if it’s to hear that things are rubbish. You have a silent group of friends here who know your story and care hugely .

sending a massive hug. Much love , Olympics xxx

MyOtherCarIsAPorsche · 08/01/2023 00:19

@olympicsrock

You've hit the nail on the head!

Sod's Law!

It was the weekend after Live Aid.

I was supposed to be working (I was a student and I worked at weekends in a nightclub - used to wear a rather sexy uniform which dad thought was a top).

He was on his friend's stag night (from way out of area) and they'd been thrown out of two nightclubs already.

They ambushed me and my friends and used us to get into the coolest nightclub in town.

Unfortunately, he's never been able to dance which has been a great source of embarrassment to me over the years.

We weren't supposed to meet that night - it was a profound set of circumstances.

And the rest, as they say is history.

We truly, madly loved each other up until last year. We are total opposites and we fitted together perfectly. The night we met he said he would marry me - I told my mother. She said 'as long as he doesn't drink and have tattoos'. Those two points he failed on.

We were just having a lovely normal life .... and then life got in the way .... I've ended up with a total stranger. Now I don't even like him (his behaviour has shocked me) but I do care.

I'm going home tomorrow, today, Sunday. Purely because I always cook Sunday lunch for whoever wants to attend. Plus the nana trifle.

God that makes me sound old. I feel old - my whole body hurts. I'm 56.

This year life begins at 56! Down but not bloody out.

I'm going to knit a bit more of Dorothy Mouse and see if I can get a few hours sleep on this sofa.

OP posts:
olympicsrock · 08/01/2023 01:01

Down but not bloody out indeed. @MyOtherCarIsAPorsche be proud tonight I dragged myself out in fancy dress and danced to abandon. Haven’t done that for years and struggling with chronic shoulder pain. Perhaps getting drunk and dancing is the answer! Sending love xxx

olympicsrock · 08/01/2023 01:01

Show us Dorothy mouse!

olympicsrock · 08/01/2023 01:02

Thanks for sharing the original live story - maybe it will come good . Have hope xxx

MyOtherCarIsAPorsche · 08/01/2023 02:31

Wasted an hour there.

Took a photo of my bits and pieces which make Dorothy Mouse and my phone has randomly scrambled my photos and I can't find it. Was looking for an hour.

I've done head, body, tail, legs, arms, ears, ruffle top, pants, and bolero. Just have shoes left to make then can sew up and stuff.

You could Google Dorothy Mouse - it's from Knitted Animal Friends (book).

You nearly got a pic of someone's sunburn as I had accidentally selected that.

It's been a good look back at a selection of life but I must get round to deleting all the stuff taking up memory/room. Endless photos of food, potties, nappies, zits, grandson's seizures (we're to evidence them for some strange reason but it just seems cruel) - all the screenshots which make a point of something long forgotten.

Wonder why that's happening? My photos were in reverse order just recently? Anyone know how to put photos back in reverse chronological order?

Right! Hot chocolate time, then watch a bit of Netflix.

OP posts:
MyOtherCarIsAPorsche · 08/01/2023 02:43

@olympicsrock

What was your fancy dress? I'm imagining Bridget Jones' bunny girl outfit.

I only dance with abandon when no one is about now. People don't seem to appreciate my gyrations.

I really need to get rip roaringly drunk - only I'm always up and away early.

In fact can't remember the last time I was drunk.

It could've been the time the dining room table was used inappropriately (all the place settings were strewn about the floor the next day) and I woke up at about 6.30am after the radiator had come on and burned a thin line of blisters across my forehead as I was somehow wedged under there and H had gone to bed and left me because he couldn't lift me up. 😬

OP posts:
olympicsrock · 08/01/2023 09:29

@MyOtherCarIsAPorsche that’s hilarious re dancing on the table!

I found Dorothy Mouse who is very sweet.

Well last night was an 80’s party. So I wore black and white leggings with a CHOOSE LIFE t shirt, lime green and blue tutus, pink leg warmers,fingerless gloves, beads bangles, blue eye makeup. A big lime green headband with a bow finished the effect!

It did me a lot of good I think to dance.

Hoping that you have a relaxed peaceful Sunday with no arguments. I am off to do a ward round 😩 xx

Stomacharmeleon · 08/01/2023 13:30

@MyOtherCarIsAPorsche I just want to give you a big hug and the day off.... and by that I mean a days brain peace and quiet with nothing to disturb you.
I know what it's like and the unrelenting feeling of living in a pressure cooker.
Like I said. Hugs xx

MyOtherCarIsAPorsche · 08/01/2023 15:10

@Stomacharmeleon 🥰

I'm still at daughter's house - she's worse than ever today.

OP posts:
LakieLady · 08/01/2023 15:31

I've been following your threads from the start @MyOtherCarIsAPorsche , and I can't imagine the strain you are under. My heart really goes out to you, I can't imagine what it must be like to find your husband turned into a virtual stranger almost overnight. To have all the worry about your daughter and her children on top of that seems positively cruel. Life is so unfair.

Your writing is so poignant, I think you should write a book about what you're going through, or that some talented director should make a film based on your posts. And I've mentally cast Olivia Colman as you!

I really hope that this new year brings some positive changes for you all.

icelolly99 · 09/01/2023 16:13

Hi Op, long time lurker - been following your situation with interest but not read everyone's responses so apologies if this question is a duplication...Has anyone involved in your husbands medical treatment suggested he is now suffering from psychosis following his medical issues?

Whydidimarryhim · 09/01/2023 16:35

Do you have a home start in your area - they maybe able to provide some input with your daughter with the three children. She maybe entitled to a carers assessment via social service - there maybe some local groups that can give her some support.
you have all had such a tough year - I wondered if you are where depressed - it wouldn’t be surprising given everything you have been through.
🌺

MyOtherCarIsAPorsche · 09/01/2023 20:52

Apparently, pump head is quite common after being on bypass during surgery. It's well documented that there can be some personality changes.

He is extreme.

When I think of all our little 'in-jokes', 'looks', 'sayings' and gestures which we've accumulated over the years it makes me so sad.

He's not interested in 'talking' or therapists as there is absolutely nothing wrong with him. 🙄

It's just been a barrage of verbal and emotional abuse since the surgery/recovery. And I completely understand what he's going through - it's just impossible to tolerate and remain cordial. Not just me - family and friends have had similar barrages and in some cases worse than me.

I'm actually in my own bed at the moment - I came home Sunday night/Monday morning. I have the lurgy. My body hurts and is much stiffer than usual.

H has been checking in on me and bringing lemsip, ginger tea, and warm lemonade. Non of these are very good things to have when semi-prostrated, when you have a hiatus hernia and gastritis. The acid is something else and it is making itself known far too frequently.

He sat (on his side of my bed - we still have separate bedrooms since the op) for half an hour this afternoon, (K-com are making a huge racket as they are putting in superfast cables or something - we've had a dozen or so cancelled appointments over more than 6 months now, so no one was expecting them) and we talked about things which were inconsequential (daren't take the bull by the horns and confront him anymore - no point) and he was normal, even nice. So I coughed in his direction a few times and thought 'take that yer bastard' (apologies I hate swearing, but needs must).

I've ran out of lemonade (which is barely lemony at the best of times, but my taste buds have crashed) and I'm going to message and request that he gets me another bottle from the garage - he'll like that. 😉

I will dramatically cough when it's duly delivered in the hope that he gets some virus. Although he's saying that he had this at Christmas and that's why he was 'grumpy' (his word). I know 🧐

I will stay in bed Tuesday and possibly Wednesday, at a stretch Thursday - and I will enjoy cat napping (my throat is inflamed, almost closed, not much voice) my nose is streaming, both nostrils, and coughing, snoring (possibly snorting) and drowning in snot are keeping me from any form of prolonged shut-eye.

My daughter, whose house I would normally be at to help with her children, doesn't want me round this week 🥳. (She lives an hour away by car.)

I do think that I'm depressed due to living with Dr Jeckyll/Mr Hyde, lack of restful sleep is adding to that, and as others have suggested, I have to try and let all comments/warped behaviours strike my resilient protective shell and bounce/rebound back. Now that's a bloody hard one to get used to and I'm doubting that I'll ever get my head round it. There's only so much shite one can take before one becomes ground into the dirt and starts gibbering like a gibbery person. But I am actually trying and if my own little way of doing that is putting two/one finger/s up behind his back, is my way of 'retribution' at this moment in time - then so be it. He did see my reflection in a tv screen doing this - and it made us both laugh. This is due to the fact we both know how ridiculous the situation is.

Ah ha! He's visited me on my sick bed and my lemonade will be arriving shortly. He did attempt some small talk (he's been in the garage on his many pieces of keep fit equipment which he rarely walks past) and I told him to sod off and bring me a drink, which elicited a faint wry smile, in the corner of his mouth - barely imperceptible. I can't wait to hear what droll piece of information he'll have for me when he returns in due course.

Isn't it odd?

We can't stop caring for each other, yet we can hardly tolerate each other.

It's a conundrum.

With regards to Olivia Coleman playing me in my life story - that's quite interesting as my son put my Netflix icon as her playing the Queen when I login.

I've not thought who I'd like to 'be me' in my biopic. I'm 56, unfit, hate my neck, (all of my body really) and when I catch sight of myself (I try not to look - I know where I regularly catch my reflection, so I'm adept at avoiding) I look identical to the picture on my late father's bus pass - in which he looks extremely cross.

I was once convinced I could see Sarah Ferguson around a market stall in the city she was Duchess of. It was my first day out alone when my son (now 30 yrs) was 3 months old. It was the end of a hot summer and I had lots of freckles. I was wearing a buttoned up polka dot, flowing dress and uncomfortable sandals, and my hair was swept up in a high ponytail. I was carrying several 'nice' shopping bags and had my most expensive bag slung across my body. I walked (tottered/staggered as my feet were killing me) around this market stall several times in an attempt to get a bit closer to Sarah Ferguson but eventually realised that it was me looking in the mirror of a hat stall. Was I imagining tourists surreptitiously taking my photo - as they had obviously thought the same? There are some similarities between us - even her father resembled my father.

But, I feel old and haggard - haven't had the privileges of royalty (haven't had my toes sucked 🤢) and time hasn't been kind.

I would be more than happy for the sister of the main character in Happy Valley to play me 🤣 and if I was being thorough I would Google it and obtain her name.

I'm still waiting for lemonade - he's forgotten.

OP posts:
MyOtherCarIsAPorsche · 09/01/2023 20:53

This reply has been withdrawn

This message has been withdrawn at the poster's request

MyOtherCarIsAPorsche · 09/01/2023 20:54

This reply has been withdrawn

This message has been withdrawn at the poster's request

Swipe left for the next trending thread