Wife at work today

[Damonlufc88]

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?

Hi @Damonlufc88

I am sorry to hear about your wife's diagnosis. My dad was diagnosed with HD just under two years ago as soon as I read your comments about her having a terminal illness and how it is currently affecting her I knew what it was. I hope those smug fuckers who say there is no such disease that causes symptoms like that will be back to apologise to you.

Your wife's employer should definitely be making adjustments and enabling her to continue in her job if she is able. Have you contacted the HDA? Their specialist advisors should be be able to advise on how to deal with this and also advise you regards benefits etc.

I'm sorry you are dealing with this and your wife's employers are not proving helpful at 5he moment.

@bevelino I'm so glad you have no experience of any disease that causes such symptoms, what a luxury to be complaining over nothing. Next time please consider you have no idea what you are talking about before you make such an ill informed fucking comment

@eelbecomingforyou be glad you have never had first had experience of this 🤔🤔🤔🤔

Oh op, I feel for you. Yadnbu, they are in the wrong.

@sparkleyes. A good friend of mine has HD. Hers did not start with ‘naivety and saying yes to things’. It began with anxiety, depression, personality change, clumsiness, mood swings, apathy, lethargy, anger and paranoia.

So get lost with your ignorant insinuations.

Op’s understanding/description of his wife's HD is not one I recognise. And when I queried it, he had not mentioned HD.

@sparkleyes. Just seen your reply to @bevelino. My comments above stand.

It was a very odd way for op to describe HD symptoms, and at that point he had not mentioned his wife’s diagnosis.

You sound as if you have been affected by HD, and i’m sorry for that, but you’re misdirecting your anger here. Bevelino said nothing wrong, and you were rude.

Actually I thought Bevelino's post was rude and abruptly dismissive of the OP's concerns about his wife too.

@eelbecomingforyou it's hardly a checklist thread to what symptoms my wife has/ has not got. The original question was were work being unreasonable not to take her out at the end of her shift knowing she is on a short shift regardless of HD or not. And that they hadn't contacted her to see if she was OK or wanted relieving. As the thread has escalated I've answered questions and people's comments best I can to clear this up.

Regarding being nieve I always remember wife telling me when we were dating how people would take advantage of her mum. borrowing/TAKING money, cigarettes etc so yes I do fucking think that her being nieve is a potential symptom and people take advantage.

Update is that wife is considering making a formal Complaint but what's its going to achieve really? What can be done?

Thanks for all your comments of support around the situation prior and after my wife's condition was mentioned. Especially the guys offering furute advice. Without tagging I've read all your comments and aprichiate them all

eel funny that HD is in my husband's family and my heart sank when the op mentioned nativity and saying yes to things as that's a very accurate description of one of my sil who has HD. You know one person with HD and are generalizing on that small experience. Try living under the shadow of having watched multiple people you love dying from it, suffering from it and been at risk as my own husband and children once were and many more are and then you may begin to have a glimmer of understanding. It's a very very complex condition and takes much much more than knowing one person with the illness to get any sort of idea of what it entails. Also please remember HD sufferers are people in their own right and they retain plenty of their own personalities throughout the illness and don't deserved to be generalised.
belvino was extremely ignorant in her comment, she hadn't a clue what was been discussed and decided to thrown in her own opinion as fact.

Op I'm so sorry to hear your family is affected by HD. Do you have any support?
Is your wife diagnosed as symptomatic or just gene positive as yet?

@bevelino probably shouldnt judge before you walk in someone's shoes eh?

@Lonesurvivor (sorry I'm Only tagging people now as wasn't aware how to, or if it even helped before)

Wife current not diagnosed with any symptoms yet but as noted previously her swalling ability has declined recently, me memory and definitely been more clumsy latley so immediately the warning signs are there for looking and jumping to conclusions and everything is blamed on HD she tested positive in 2008

@eelbecomingforyou yes I am angry. But I'm afraid I won't get lost! I do however appreciate your response and I don't think you need to reply on behalf of the other poster.

I have a limited experience of HD in that my father was diagnosed with it last year, I have however chosen to educate myself on the disease and understood from the ops post what it could be. I do not deny my anger in fact I embrace it. We allow ourselves to feel so little anger so little these days and I have been called out on making assumptions for so little in comparison on this site that I wanted to make s point. I'm sorry if it troubled you but I'm sure your temporary discomfort is much less than any person or family member coping with hd. I have spent the last 24 hours discussing the topic and more pertinent to this site how I will tell my children they are at risk so whilst I may be "touchy" and "angry" i couldn't actually care less. People made judgments about the op being controlling despite his clear reference to his wife's terminal illness. Posters including yourself intimated this was somehow a fault of the ops when he didn't want to share the personal circumstances.

OP sorry for hijacking but having spent all day discussing the implications of hd I feel very very strongly about this subject and one day being at risk personally I may not be able to speak up for myself.

@eelbecomingforyou @bevelino said There is no terminal illness that starts with naivety and saying yes a lot of the time. OP, you are complaining about nothing. I think this was very rude and dismissive I'm afraid, I'm not quite sure who wouldn't 👀

@sparkleyes please don't apologise its nice that people who know about this cruel illness havent shyed away. Like I said on the other thread I wished I knew about the HD weekend with more notice

@eelbecomingforyou this was your comment A terminal illness that starts with naivety and saying yes a lot of the time...? 🤔

Op, you may be concerned about your wife but you’re coming across as controlling

I'm sorry to take you to task I'm sure you didn't intend to be so rude, especially as you have since stated you have a friend with hd. But surely you can see this ignorance (through no ones fault it's very complex) is a problem when making judgements. I have had friends who are nurses tell me it's ok because only boys get hd so forgive me when I challenge these misconceptions. Because , yes, rightly so it makes me angry and I do not need to be belittled when it's difficult enough living with the knowledge that you have a 50/50 chance of having Hd. I would much rather feel slightly miffed that and angry woman on the internet had challenged me 😂😂

sparkleeyes I'm sorry you're going through this too, it's awful. We've ended up "lucky" in that we aren't affected but had HD hanging directly over us for over a decade until dh got tested negative.
Like you we didn't find out parent in law was affected until later in life (and after having children) I understand the anger and frustration. Somehow though we did manage to compartmentalize it and continue living, actually I think because of the fear of HD we probably lived a bit more than we would've had we never been affected if that makes sense.

damon the best advice I can give you is not to symptom seek. Leave that to the experts until you know for sure the illness has started. Has your wife regular visits with a neurologist, does she have brain scans/mri and evaluations to track any progression?
Honestly before my dh tested negative we both saw so many symptoms, mood wings, twitching and movements just night, we had accepted he had the illness. I think premature diagnosing is as bad as denial. Finding middle ground is hard but I hope you get the help to make sure you do.
Do you know (or mind me asking) what your wife's CAG is?
My parent in law has late onset as has some of her children which is assumed to be due to a lower CAG.
There is some excellent research and findings into HD recently, please let it be that in this life time there will be a treatment/cure.

Thanks @Lonesurvivor it's at tough one. We had no ideas this was in our family until 2016 whenit was identified in my dad. He is the oldest of 7 sho all have children and grandchildren so huge ramifications.

I am currently deciding whether to start the testing process and also how to broach the subject with my teen/preteen children so it's a very raw nerve.

@Lonesurvivor I don't know what my wife's CAG is. How would we go about getting this tested? She sees a neurologist, she has only really been going regular over the last 18 months but they haven't done anything along the lines of having a brain scan although I ask my wife about it and she seems to think that they will mention it, rather than my wife to bring it it.

I understand sometimes staff may have to stay longer but knowing your wife has HD, they should have considered this and not sent her. The home need to undertake risk assessment to protect their staff as well as patients/service users. Your wife should not be sent to support with medical appointments - unless it is urgent and nobody else can attend - as they often run very late and transport can be patchy. Has she had any involvement from Occ Health at work?

I’m sorry for all you’re dealing with, HD is a cruel disease. It sounds like your wife would benefit from accessing some more support and info on what benefits she may be entitled to and what the plan is for her medical care, not just now but in the future also. Have you guys been in touch with the HD Association? If not, I would highly recommend it.

Your wife should bring stuff up with her doctor. Maybe not bringing things up and assuming the doctor knows what he is doing is part of the general symptoms - naivete, trusting, etc.

My main argument is that knowing she is on a 4 hour shift why send her in the first place withoyt a phone call prior to work "you may need to chaperone can you sort out In the event that your hours will maybe be extended today XX has an appointment at 17:30"
YANBU at all.

To have someone out until 23.15 which turned a four hour shift into an eight hour shift is unacceptable. She absolutely should have had advance warning, even so that she could eat an appropriate meal that would have tided her over for six or eight hours, or packed tampons in her bag if she needed to, or made arrangements for children or family.

They clearly don't want to hire enough people to meet the needs of the clients. It is really poor management to put profit before service, but the care sector is one where employees come and go, and the clients are often people who would never complain about anything, so management gets away with shoddy treatment all round..

I hope your wife will join a union asap, and then start logging incidents like this, including lack of OT assessment.

@sparkleyes when I posted the OP had not mentioned anything about his wife’s Huntingdon’s diagnosis. In fact his posts were a drip feed of information. As a former nurse I have cared for patients with Huntingdons and none displayed symptoms of naivety, seriously they did not!

YABU to be so het up about your wife staying a few hours late at work. So controlling.

YABU to be so het up about your wife staying a few hours late at work. So controlling.

try RTFT

To have someone out until 23.15 which turned a four hour shift into an eight hour shift is unacceptable

And walking back a mile and a half in the rain on her own after that. How fucking disrespectful of them.

That's absolutely awful to let anyone walk home at that time. They should pay for a taxi. It also sounds like they are understaffed. Appalling.