Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

Buy now

Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Wife at work today

138 replies

Damonlufc88 · 12/10/2018 18:03

So my wife works in a nursing home. Today she is working 15:00-19:00 (she works around my shifts) when she got work she was told she had to chaperone a resident to the hospital (35 minutes one way) this was at 15:30 fast forward to 6pm she is still there, resident seen the doctor and now informed that the resident needs to wait 2 hours for a blood test... Friday at 8pm. Am I being unreasonable to think that her work should have made arrangements for another staff to take my wife out at 19:00 from the hospital? Or is she expected to sit there all night whilst the resident is seen to?

OP posts:
TwinMummy1510 · 14/10/2018 04:23

I'm another one who instantly recognised the description of Huntington's. My dad died from this awful disease four years ago - I was his sole carer. Two of his brothers also have it. Myself and my brother are "at risk" which means we each have a 50% chance of having the disease too.

Just a couple of points - for those who say they've never seen it present as naivety and saying yes... Some of the cognitive changes which occur during Huntington's Disease include a lack of self awareness, an inability to problem-solve and also a difficulty in prioritising. If you read between the lines you can see how these cognitive difficulties could very easily lead to someone who is naive and can easily be persuaded to agree.

My dad only lost his motor functions towards the end - he was very badly affected cognitively from a relatively early point. I was heavily involved with a Huntington's Disease research panel and also the local HD group - there were others who lost far more motor function earlier but remained relatively intact cognitively until later on. Huntington's has a very unique presentation from person to person but the personality does undergo a very big change.

I've not been tested as I can't bear to know if I'm positive. I'm a coward. I also have an ASD son. The idea of not being able to care for him while still being physically present is horrendous. I don't want to put him through what I went through with my own dad. I'm now 43 and the chances it will start to show soon if I have it. It's awful living with the shadow of this disease - and I'm someone who always thought they'd face things head on.

I'm not going to have a go at anyone specifically but don't judge things you don't know enough about. It's a bloody devastating disease and the presentation OP describes is entirely feasible. I lived and breathed this disease for several years while caring for my dad and met many, many sufferers and also people who like me, are at risk.

OP - re the CAG count, your wife's neurologist will already have this information. It's what they look at when they diagnose the disease. However, not all doctors are willing to tell their patients what their CAG count is. The reason for this is that it's not been completely proven that CAG repeats are absolutely linked to the age of symptomatic onset. There seems to be a link in some cases, but not all. Therefore, some neurologists have been reluctant to give out CAG scores as they don't want to cause either false hope (for a late onset) or a panic. This article describes it really well:
insidehd.com/the-in-between-years-part-5-1786644b0eac

Also, my dad never had a brain scan in the whole time he was under the care of the neurologist, post diagnosis. It's kind of pointless. There's drugs they can give you to slow the motor difficulties but these tend to make the cognitive problems worse. It's a catch 22. Care is generally based on reported symptoms and observed decline in neurological function.

What I would get your wife to ask her neurologist is whether she's been added to the clinical trials database - I think it's called EHDN? Something like that. Neurologists in hospitals enter their patient details and then when a trial comes up that fits your wife's criteria she can join it. It means the potential to access new and cutting edge treatments before they're widely released. Lots and lots of developments have been made in HD recently, including one big landmark discovery. Your wife is young and not yet heavily symptomatic so it's worth getting onto the trials if you can.

Re benefits - I doubt she'd qualify for anything yet. She's not functionally impaired yet, a diagnosis alone means fuck all.

Sorry to have diverged from your original subject. To have her shift doubled and then have to walk home very late in the dark is appalling. I think my focus would be on making sure that it doesn't happen again. Maybe your wife needs to have a chat with her employer and make it clear that she won't be put in the same situation again. It sounds like poor planning from management.

My inbox is always open if you ever want to chat about HD. It's a shitty hand you've both been dealt and I really feel for you.

Runningishard · 14/10/2018 07:26

Those who doubted that the OP’s wife has terminal illness just because they didn’t equate the symptoms wanted OP to state he was unhappy his wife had to work late because he wanted her to come home and take over parenting duties. So much pre-judging from people

ivykaty44 · 14/10/2018 08:17

Twins
Thank you for sharing, I was unaware and has certainly enlightened me

AuntyJackiesBrothersSistersBoy · 14/10/2018 09:34

Helena.... and they (the powers that be) wonder WHY there’s a shortage of care workers!

Damonlufc88 · 14/10/2018 10:18

@TwinMummy1510 wow thanks for that post you made above I'll definitely take you on to PM you, when the kids are at school in the week and I can gather what I want to ask/say properly. I've noticed alot of know-all are quick to judge. This thread has really enlightened me and realise people do actually want to help and appreciate what the future holds. I still thing regardless of illness or not. Somebody who was in work when my wife finished should have got in a taxi from work to relieve my wife, even if they wouldn't arrive until after 7 to relieve my wife and she could have had the taxi back. People have said about the home being understaffed and not able but they were also understaffed when my wife had to leave.

@Runningishard never once did I say I need /want her to take over parenting duties. I never mentioned HD originally as didn't think it was significant to my OP

OP posts:
Damonlufc88 · 14/10/2018 10:21

... @Runningishard although I did have to be up for work early yesterday. Kids spend the morning with GREAT grandparents (as I have also lost my mum too soon in life and both our dad's don't seem to bother) so wife could catch up on sleep. They are a godsend

OP posts:
Lonesurvivor · 14/10/2018 11:14

Great post twins
belevino for a nurse your ignorance is even more astounding. Also you would've cared for patients in mid/late onset and have zero insight into the changes that occur in stage one.

damon we received my husband's cag count with our results from the genetic councillor.
en.hdbuzz.net/133
The above is a really informative site.

One of my in-laws is P HD (diagnosed positive but not yet symptomatic) and has a yearly assessment with a neurologist and scans to note changes in the brain.
Other in-laws have never had any scans.

BakedBeans47 · 14/10/2018 11:14

Quite OP. Illness or not I hardly think it’s “controlling” to be concerned that your partner, who you love, is having the piss taken out of her by her employer.

Lonesurvivor · 14/10/2018 11:17

damon you were right not to mention HD in your op. What happened with your wife's work was wrong and the info you gave should've been enough without having to explain about a predictive diagnosis.

al2002 · 14/10/2018 11:59

Also, the employer's lack of regard for her safety late at night is very concerning.
Her employers should have paid for a taxi home at 11.15pm, not let her walk home. That's disgusting on its own, but when added to everything else ...wow 😯

HelenaDove · 14/10/2018 18:16

@al2002 I can just imagine the arse covering if (God forbid) something happened to her.

bevelino · 14/10/2018 18:21

@Damonlufc88 my heartfelt apology and I hope you and your dear wife receive the support you need. If you should ever need any legal advice please pm me, but please use the @ so that it appears in my email inbox.

Runningishard · 15/10/2018 16:54

OP, I know, I wasn't having a pop at you. But I could tell through the tone of other pp's who were disbelieving of you that they were attempting to goad you into saying something about being left with the kids. I realise you were not saying that yourself.

New posts on this thread. Refresh page