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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 · 30/05/2022 11:26

This was my last post on previous thread.

I'm still at my daughter's house. Her youngest is still in hospital. The lorazepam didn't stop his fits. They are continuing. He's been in hospital now since Saturday evening and we're no further forward with a diagnosis, treatment plan, help/advice to manage his episodes.

I'm absolutely shattered. I don't sleep well at all unless I'm in my own bed. My grandchildren wake up extra early (5.30 am), making it a very long day. They are both missing their mum.

My daughter is also shattered and has had very little sleep at the hospital.

I have had the children, one way or another for 8 consecutive days now. Hardly a minute to myself - but this is extenuating circumstances.

I mistakenly watched a frightening film last night 😬 I watched to the end and felt too scared to go to bed, so I stayed up later than I intended. I was messaging my husband for some sort of human contact but he must've gone to bed.

I'm surrounded by people and I feel lonely 😩

OP posts:
MyOtherCarIsAPorsche · 30/05/2022 11:33

@olympicsrock

@Fraaahnces

@halfgirlhalfturnip

@carbay

@MmeHennyPenny

OP posts:
MyOtherCarIsAPorsche · 30/05/2022 11:36

I can't link to first thread

no idea

don't think tagging has worked 🤷‍♀️

@olympicsrock

OP posts:
MyOtherCarIsAPorsche · 30/05/2022 11:37

@Fraaahnces

OP posts:
MyOtherCarIsAPorsche · 30/05/2022 11:43

Well - a doctor has seen him. Whist the doctor was there he had two fits. Thirty seconds duration and two minutes duration.

The two epilepsy consultants aren't in today. They are not in tomorrow or Thursday & Friday.

It's not even certain that he will get the tests mentioned yesterday - the extended EEG and the MRI.

Feeling frustrated.

OP posts:
chesterelly1 · 01/06/2022 08:42

Delurking to say I followed your last thread but I had nothing to add to the wonderful advice you were getting from others. I hope you are seeing progress with the care/diagnosis/treatment of your DGS and that DH is behaving himself. Keep looking after yourself and I'm sure the MN vipers will be along soon to keep supporting you. Sending big unmumsnetty hugs

Innocenta · 01/06/2022 08:43

I'm glad you made a new thread, MyOtherCar Flowers

Fraaahnces · 01/06/2022 09:20

@MyOtherCarIsAPorsche I’ve found you and I’m still here. Poor little boy is having a rough time! (And his family!)

MyOtherCarIsAPorsche · 01/06/2022 09:26

His nursery refused to take him today 🤔

OP posts:
Fraaahnces · 01/06/2022 09:40

I can’t say I’m surprised. They’re not really trained to cope with that and monitoring him while he is clearly so ill would take a lot of resources.

Lougle · 01/06/2022 09:44

I'm so sorry the stress continues. I hope they get to the bottom of it soon.

MyOtherCarIsAPorsche · 01/06/2022 11:26

Yes - difficult because if nursery don't have him she can't go to work.

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MuchoMistrust · 01/06/2022 13:41

Completely understandable that the nursery won't take him. He's not at all well and they won't be able to deal with his fits.

I hope your daughter's employer is understanding. Can your son in law share the load?

Fraaahnces · 01/06/2022 13:44

Your DD or her DH need to take family leave. It’s really not appropriate for DGS to be at nursery. If he had a fit and something terrible happened there, a) Your DD would never forgive herself and b) the nursery would be held accountable - unfairly.

MmeHennyPenny · 01/06/2022 13:53

Just wanted to say I found you again.
Sometimes life does seem to go in a downward spiral- so many things conspiring against us. It does stop and life is restored to a more even keel again eventually.
At least that is what happened in my family.
Onwards and upwards - (and let it all out to us).

legosnowqueen · 02/06/2022 18:35

How are things today OP?

olympicsrock · 04/06/2022 07:37

Hello Found you!
sorry to hear that things are so difficult with your little grandson. You must be exhausted!
I think your daughter and son in law will have to take some emergency carer’s leave. I can’t really blame nursery for not being willing to have him at the moment. Bloody awkward though!

thank goodness the trip to the cricket went without incident .

I finished my on call week of doom yesterday ( which for once was ok. ) We had a lovely little street party with neighbours yesterday.
hoping you can all enjoy the Bk weekend!

MyOtherCarIsAPorsche · 04/06/2022 11:03

My husband has been busier than he should. He is able to have afternoon naps though. I'm more than a bit jealous. He's been gardening and sitting in the sun and has a walk into the town to see friends every day.

I used to look after one daughter's children at our house but he still can't tolerate them so I spend all week out of the house.

My grandson is having up to a dozen 'absences' a day. He falls backwards and is unresponsive for up to 5 min. He's been in and out of hospital since last Saturday. The advice now is to ring an ambulance if he has a significant shaking fit or his face goes blue. He has not seen a specialist yet despite being in hospital for four consecutive nights. When he comes round from these absences he's either grumpy or laughing. His mouth is sore from 'chewing' during the absences. Nothing has been done to explain what's happening and my daughter needs a solution and some support. He has open access to a ward but there's no point taking him back as nothing has been done. He has had two eeg one about a month ago and one last Tuesday which showed nothing up despite the frequency of his falls/absences.

My daughter is on her own. Her ex was found to be using sex workers every week - even during lockdown. Her second child was born Jan 2020 her contraceptive appointment was cancelled at the start of the first lockdown. She became pregnant straight away and had another child Nov 2020. This is the grandson with the episodes. My daughter had covid at the time she went into labour and was very unwell - before the vaccine roll out. He was born at 32 wks.

Her ex stopped coming home from work during her last pregnancy. When we changed our daughter's locks he started stalking her. We found out that he'd told her that if she didn't have an abortion he would leave. He has several Facebook accounts in different names. He spent time in jail for arson. All this we have found out since our daughter's last pregnancy. He's a very unremarkable man within a Walter Mitty world. He has a very overinflated sense of superiority. He's a sex pervert with a personality disorder. I'm still worried that he'll burn the house down. The house was completely in her name along with all bills. He gave her £500 a month. She was always short of money as he refused to give her extra. He told everyone he was rolling in money with his successful business which now apparently makes no profit so he can avoid paying maintenance. She found letters which revealed he had two teenage boys that he was also refusing to pay maintenance for when she cleared out his belongings.

She is on her own. She's up during the night checking on her youngest all the time whenever she hears a noise and she's constantly checking her Owlet App as his heart rate goes up significantly during his absences. She's mentally and physically shattered. Now nursery don't want to know. He had his first absence at nursery two weeks ago and she had to go straight there and collect him. These absences were thought to originally have been through the night and at times of tiredness and illness but they have suddenly escalated. Nothing has been done for my grandson or my daughter. Her employer has been tolerant up to now but the NHS has done nothing. He has no official diagnosis or medication. They've said that it's possibly some form of epilepsy and they've referred him to an epilepsy clinic which we now have to wait for the appointment. This has been dragging on all this year.

In happier news - my younger daughter (expecting twins) got engaged last night. A complete surprise. She had her 24 wk scan on Wednesday - all good. They are now planning an engagement party. And possibly a wedding.

I've been watching the jubilee highlights on the tv - I could tell a tale or two about Prince Philip. My father used to man the boat when Prince Philip went water skiing when they were stationed in Malta, in the Royal Navy. It almost makes me feel sorry for Andrew considering his father got away with it. 😬

OP posts:
olympicsrock · 05/06/2022 08:16

I am sending you a massive hug reading this. It totally makes sense now that you put your daughters and their children before your own well-being. What mother is this situation wouldn’t? Your heart much be breaking to see her so abused. What a creep!
I feel so sorry for the girls who became mothers over covid. No support, no baby groups, what a bad experience. My maternity leave was hard enough and I had a really nice group of ‘mum friends’ to share the pain. And I didn’t have the energy to do number 2 for 3.5 years !
DH sounds like he’s living a cushy life at the moment. If he’s well enough to go on trains for days out , he is well enough to put up with a grandchild in the house!

I don’t believe for a second that Prince Andrew had covid. I think he was planning a happy return to the family in public when some senior official told the queen not to ruin the good PR for the royal family with his seedy presence. He will have been told to keep away. If we ever meet in real life I would love to hear about the real Philip!

Fraaahnces · 05/06/2022 08:21

@MyOtherCarIsAPorsche - God the world needs more of you. (YOU need more of you atm!) So pleased that that a-hole is not in your DD’s life anymore, but so sad that things are so very hard for her and DS. (And all the other circumstances in your family too, of course!) You must be shaking your fist at the sky wondering when your good karma is going to show up.

MmeHennyPenny · 05/06/2022 09:01

I’m so sorry to hear about your dd’s experience. A close family member of mine experienced a very similar situation. We still never know when he will return to wreak havoc again.
I’m pleased to hear you have some good news too.
For what it’s worth- I’d be putting my foot down and child minding from my own home , if it’s easier.
Tell DH the children will do him good!

avoidthecreakystair · 05/06/2022 11:17

Hope you are OK, OP. Flowers

RE your grandson - not uncommon for EEGs to be normal in someone who has had seizures, because it only shows brain activity at that moment. That is probably why they want to do an extended EEG as it increases the chance of catching abnormal brain activity.

www.epilepsy.com/diagnosis/eeg/what-if-its-normal

Did the MRI show anything?

Frolie · 05/06/2022 21:47

I want to hear more about Prince P - do tell!

Very sad to read about your dear little grandson ; such a worrying time for you all. Your poor daughter.

MyOtherCarIsAPorsche · 06/06/2022 18:06

@olympicsrock

So he's had another concerning symptom occur today.

He lost vision in one eye for approximately two minutes. He said it gradually got dark in one eye until it was completely black.

Again - he won't go to hospital. 🙄

Do you think this is serious?

OP posts:
Fraaahnces · 06/06/2022 18:08

I would be very concerned!