Hello, I’m new here and so may be posting in the wrong place. Apologies if that’s the case.
I’m desperate for a bit of advice, please.
A family Member has been diagnosed with Parkinson’s for around 9 years and over the last 12 months had started to get a bit more confused and we’ve noticed that when he struggles to get words out, he gives up. We’re aware it’s getting worse and understand that it will likely continue to decline.
However, he has recently changed medication and on Christmas Eve was so knocked out that he was verging on unconscious. He had a fall attempting to use the bathroom, and hurt himself. We called for an ambulance and he was taken to hospital (Not the most local, and not where his Parkinson’s nurse is based)
Before Christmas Eve he was mobile (with a walker) and capable of conversion. (Albeit occasionally mumbling and forgetful)
Anyway, he’s now in hospital and still in a state we’d liken to not having full consciousness (except yesterday, where he seemed to perk up a bit)
Anyway, the Parkinson’s specialist at this hospital has no details of good notes, they can’t contact his normal specialist, and they don’t seem to understand us when we tell them that this sudden deterioration is only since Christmas Eve and the change of medication. We’ve tried to explain how it was like a switch being flicked and we think it’s something other than the Parkinson’s - possible adverse reaction to the medication?
They don’t seem to be treating it as a change of his condition and just think it’s a natural deterioration, despite being overnight and inline with meds change.
They’re now asking us to agree to a DNR and have basically made us agree, under duress. Maybe we’re being naive to the illness, it’s just such a change and so rapid, and inline with the medicine change… we just can’t stop thinking that our feelings are being ignored. He’s in such a sedated state that he isn’t eating and drinking and could easily choke without care, and we’re worried they just won’t bother to help him.
We’re just not happy to agree that the condition has so slowly impaired his life up until a week an ago where it just suddenly turned him off.
Sorry, maybe repeating myself…
Can anyone give any advice? Has anyone seen similar cases where the deterioration is overnight like this? He was on maybe 3 different meds that commonly make patients sleepy - 1 new and 1 increased dosage both started on Christmas Eve.
We’re unable to contact his usual Parkinson’s nurse until the new year - and the Parkinson’s specialist where he is has basically said he won’t look after him as he’s not his patient. (He literally said that to us)
We just don’t want him to die because the normal medical team dismiss us and put it down to the illness, because it just doesn’t feel right.
Sorry, hope someone can give us something.
Your post highlights a complete disregard for a vulnerable Parkinson’s sufferer by the hospital. I would urgently revoke your agreement to a DNR as the patient needs your support and protection. Personally I would contact PALS at the hospital concerned via phone and email. Sadly, the Christmas holidays will probably make this difficult but at least an email will ensure this issue is logged. Like you, I suspect the medication changes have had a detrimental affect on the patient’s well being and I am shocked that the Parkinson’s consultant hasn’t been made to intervene, given that he has the knowledge and experience to help, if only until the usual consultant is available. I would request an urgent meeting with the lead doctor on the ward and voice your concerns asap
Thank you. Patient is my in-law so I’m asking for permission to voice these concerns. Obviously it’s a tough time and we recognise how busy the nhs is. (I don’t accept that a persons care should be comprised due to the management of the nhs)
Apparently a nurse was stopped by family, second before she gave him oral tablets yesterday. Despite being nil by mouth, and despite him having the medication already intravenously. Surely that’s gross misconduct?!
Hello Matilda.cs
I wrote this and when I came to post caugh up with your subsequent remarks. It may be worth ringing the helpdesk to get their view but nevertheless I think my reply still stands.
I absolutely agree with Bridget. Whatever is going on with your relative’s Parkinson’s medically you should not have been made to feel you had to agree to a DNR. That is never a decision to be taken lightly and since you are clearly not comfortable with that decision and indeed felt under pressure to agree is in my opinion, quite frankly appalling.
I would also strongly advise you make careful notes as to what you have been told or discussed with anyone involved in your relative’s care including names, dates, time with as much detail as you can about the circumstances. It seems to me you have grounds for complaint but even if you choose not to do so, or not at the moment anyway, it is easy to lose track in situations like yours and notes can help you to make sure you ask the right questions and understand fully any options suggested. Don’t be pressed into making decisions you are not comfortable with and certainly not immediately. You don’t have to explain, just use a simple phrase and repeat it whenever you are feeling press ganged. Something like 'I can’t make any decisions about that at the moment.
I think you may have to play a holding game until the New Year holiday is over but get in touch with the local medical team as soon as you can once everything is open again.
My thoughts are with you. Let us know how you get on.
Tot
I agree with Bridget and Tot. Deterioration is more than likely down to medication change. I would put in a complaint via PALS and that should get the right people involved. Sometime you just have to complain and this is urgent.
Ask for this to be logged as a critical incident and ask for the director of nursing to be involved with the relevant reports filled in to provide evidence t to the medical director of negligent care by clinical staff involved. If necessary involve PALS as well so they have an idea of what is going on .
This is urgent given what is going on in our hospitals at the moment and patients can deteriorate very quickly. ALL clinical staff need to understand this is NOT his baseline.
Check he is adequately hydrated. - 2 litres per day
Ask for med changes to be explained.
Is there anything else going on. Ie TIA, UTI which might explain changes.
No one should be put under pressure to agree to a DNR although I have heard this is going on in some places.
Hopefully these actions will get some sort of response
Hi, just a thought my hubby had 3 days in hospital just before Christmas after a fall and although fortunately he is ok, it’s taken him nearly 2 weeks to get over it. Agree the medication is a worry but the rapid decline maybe associated with change. My hubby only has to get a cold or worry about something for there to be an obvious change in him.
Good luck with the hospital
Hello, I don’t have anything extra to suggest but I am appalled and grieved by what has happened to your relative
As time has passed since your original post, I hope that you and other relatives have been able to improve the situation.
My thoughts will remain with you
Xxx
Thank you to everyone who had responded.
An understanding ear to hear my thoughts was useful, though you may never realise how useful.
I’m conscious of bickering between siblings and also between siblings and mum who is struggling with what’s going on.
Although nothing serious, yet, I’m aware the worst is yet to come.
It seems the prospect of moving him to a more local hospital has died a death, and some are feeling the pressure of a 4hour round trip (including travel) it’s not cheap, and associated costs will soon become a more serious issue. (We’re still keen to move him, but others aren’t and our persistence is being ignored/rejected)
Doctor Google says the symptoms aren’t uncommon for final stage Parkinson’s, so maybe we’ve been naive throughout. Difficult to discuss such things with those closest, right now.
Hes usually on mardopa which alleviates symptoms so that he can function better - he hasn’t had any since Christmas Eve, so is unable to take the mardopa to alleviate current symptoms - catch 22 situation. He’s on a substitute patch, but it’s obviously not the same drug, so started him on a feeding tube yesterday. Hopefully this will help him build some strength.
Definitely has an infection, and infection markers seem very high (199) although they can’t pinpoint the location of infection at this moment. Doing a blood culture apparently, presumably that might give more info.
Have heard a couple of stories this week of drug changes being a trigger point, but that could just be circumstantial.
They’re taking notes, and have noted several issues (24 hour patches not being changed after 24 hours, soiled bed not being changed quickly, drip not being turned on after being paused during suction on airways)
Not sure how long his condition continues before becoming his new base line.
He’s definitely in discomfort, but far from coherent when he attempts to communicate.
The road ahead may well be longer than we might want, when looking back in the months/years to come. Obviously we want him home and perhaps, hopefully, with some of the old “him” there too. If his next stage is “the final stage of Parkinson’s” then I hope it’s painless for him. If not painless, then short.
Anyway, I’ve likely babbled for too long, intoxicated by a large glass of wine on a rare day that lasts less than 14 hours before “relaxing”.
Thanks for reading.