Any advice?: Hi all, My dad is in his 70s... - Cure Parkinson's

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Any advice?

Christina08 profile image
26 Replies

Hi all,

My dad is in his 70s and has recently had to have a big op. It was around 5 hours in duration. The op has been a success however he is currently suffering with ‘ delirium’ on awakening from the general anaesthetic. I’ve been told that it is not unexpected and will hopefully start to improve. But as we are moving on to day thee of recovery I just wanted to know if anybody has any good advice?

I am going to contact his Parkinson’s nurse to see if they can liaise directly with the ward he is on, because on reflection I am not sure that his normal medication protocols have been followed whilst he has been there. He has been given a patch to deliver medication rather than his normal tablets etc. but any tips or advice you could recommend would be greatly appreciated?!

Christina

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Christina08 profile image
Christina08
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26 Replies
Kevin51 profile image
Kevin51

3 days sounds too long; I was delirious coming out of GA and a long op for cardiac ablation to treat AFib but I was OK within a few hours. The patch will be delivering a dopamine agonist - which could cause problems if he was on LDopa tablets before. But tablets may not be practical now. Contacting his Parkinson's nurse would be very helpful. You could ask for him to be seen urgently by a neurologist but the nurse would advise. Hope he improves soon.

Christina08 profile image
Christina08 in reply toKevin51

Thanks, yes I’m going to contact the Parkinson’s nurse today and I’m hoping that we will see an improvement in the situation. They did say that the medication he is receiving is different from the type he normally takes.

Kevin51 profile image
Kevin51 in reply toChristina08

Do you know what is his normal medication?

Christina08 profile image
Christina08 in reply toKevin51

I believe it’s called Co-beneldopa/ madopar . I managed to contact the Parkinson’s nurse and she came on to my dad’s ward. She said that my dad should not be having the patch seeing as he is able to eat/ drink and he has likely been given that as it is more convenient to them! Apparently there is a soluble form of his medication and she is hopefully getting my dad switched on to that. I’m so annoyed with myself that I hadn’t contacted her yesterday, but I assumed they were following best practices. I really hope this helps him.

Kevin51 profile image
Kevin51 in reply toChristina08

You could contact your hospital's Patient Advice and Liaison Service (PALS) for advice as to how best to advocate for and support your father. I doubt any Neurologist would prescribe such an abrupt change in Parkinson's medication. Once he has completed his post-op care he will be much better off out of hospital and back in familiar surroundings and on his usual medication. The ward staff will be focused on his post-op care and not on his Parkinsons so it may be a bit of a struggle to get the best overall care for him. PALS should be able to advise. There may be some reluctance to discharge him in his current mental state so if getting him back on his madopar prescription were to clear his mind that would also clear the way to his discharge. I would demand he is seen urgently by the Hospital neurologist if the ward staff are not responding to the Parkinson's nurse's advice.

Christina08 profile image
Christina08 in reply toKevin51

Thanks so much for taking the time to reply. I have got him back on his normal medicine (with a soluble form of his slow release evening medication) thank goodness for the hospitals Parkinson’s nurse though. I don’t think they wanted to take him off the patch, and she really had to tell them otherwise! I think we are now making progress, he is getting far more coherent then he was. So fingers crossed for continued improvement!

Juliegrace profile image
Juliegrace

Get him back on his regular meds immediately.

June2020 profile image
June2020

hi Christina just want you to know that I just had an operation also right shoulder repair and my doctor sent a note so I would stay on all my regular medication’s and times that I take them is very important so you did the right thing go back to staying on his meds and his times he always takes him at the same and with lots of water. I’m sure he’s improved by now because it really helps to take the same time every day. Good luck good luck June 2020

Parkinsunny profile image
Parkinsunny in reply toJune2020

It was after my second shoulder repair that I started having symptoms for Parkinson's. It was then that I learned that Anesthesia is not so great for Parkinson's and that for some people it puts you into a higher phase.unfortunately, I have a kidney stone that does not want to pass, so I need to have surgery for it on Tuesday and obviously anxious about it.

DEAT profile image
DEAT

I had a hip replacement a year ago (DX 2015).I had a stash of medications in my locked drawer while in hospital.

I never got given my medications on time from nursing staff. I appreciate the predicament they have and quietly dosed myself from my stash .

One night two nurses were administering pain relief and one noted that I'd already had my PD meds (from my stash).

She whispered to the other nurse " she can't do that. She shouldn't have those meds"

The other nurse replied "just leave her alone . She knows what she's doing"

I was in hospital for 6 nights and never missed a dose.

Be your own advocate

jeeves19 profile image
jeeves19 in reply toDEAT

Absolutely DEAT. Hospital nurses can be angels 😇 but can be devils. The worst are the nurses who are temporary and contracted IMHO .

ghoegap profile image
ghoegap

Also check on what pain meds he is getting. Might be opioids for eg.

JohnPepper profile image
JohnPepper

I have had PD for over 32 years.

I reversed it by WALKING AS FAST AS I COULD FOR ONE HOUR, EVERY SECOND DAY.!

I HAVE BEEN PD-SYMPTOM -FREE FOR 30 YEARS!

I am now about to turn 90 in October and, look forward to making 100.

There is NO MEDICATION KNOWN TO BE ABLE TO REVERSE PD.

SO. START TO WALK AS FAST AS YOU CAN, EVERY SECOND DAY!

You can have Sundays off!

Good luck!

ghoegap profile image
ghoegap in reply toJohnPepper

So respect what you have accomplished ! But this person is at the moment in hospital suufering from mental issues after surgery.....

OKWY profile image
OKWY

I think I can offer you my vast experience with my husband's hospital deliriums. The first time when it happened after a bile duct infection and sepsis in 2019, I was devastated, did not know whether that was the new normal or what to expect. I was incredibly scared and I can feel your pain and stress!

It went good after the hospital. Since that occasion, it happened on another few very short occasions, usually to do with pain killers that contain opioids or hospital procedures. We have just gone through a new emergency involving a blocked stomach and he needed a major surgery. I had a bit of a fight convincing the surgical team to do the surgery and not just send him into palliative care. That was my biggest worry. The other stuff - the delirium - I take now with a confidence and even the odd smile thinking about the story I can tell him afterwards. There are so many triggers in the hospital, not just irregularity of Parkinson's meds or as with my husband who could not take anything by mouth and needed rotigotine patches instead. They alerted me about the fact that in some people they will create hallucinations. But even without this I knew that just pain meds, even the noisy and confusing and stressful hospital environment is enough for a fragile brain to trigger it. But I told myself it didn't matter, he has to go through it and come out okay at the other end. I trust and know he always will (although there can be of course a little deterioration after a long anaesthetic). He survived the abdominal operation and didn't even need ICU support. It created a fair bit of confusion and delirium, usually in the afternoon/evening periods and he had to be watched as he tried to pull on his tubes. He is home now a week and the last 2 days there was absolutely nothing and he started to become much more alert and reactive with his responses and phone calls from friends.

So my advice is don't totally stress about what you can't control. Trust he will be okay when he is in his normal environment and the stress and anxiety is gone and anaesthetic and other meds have worn off and left his system. Allow a week or so, don't expect it to happen immediately.

Christina08 profile image
Christina08 in reply toOKWY

Thanks so much for your reply, I can’t tell you how reassuring I find it! The experience with my dad sounds quite similar to your husbands, pulling out his tubes etc. I’ve managed to get my dad back on his usual medication (although I think I will need to make sure the timings are more accurate) and he is starting to become more coherent and relaxed as he was getting very agitated in the evenings previously. I’m glad to hear your husband is doing so much better now and I wish him a speedy recovery!

LindaP50 profile image
LindaP50

parkinson.org/sites/default...

Aware in care kit - gives list of meds Not to take

Contains an info sheet to give to hospital staff

Can be downloaded and printed

An Id card for your hubby to remind staff their patient has PD

Very informative info -

Please read

And yes, bring your own meds and advise staff they will be taken if they don't provide meds on time

Best to you and hubby

Christina08 profile image
Christina08 in reply toLindaP50

Thanks for the link . I was completely unaware that this kit existed and it looks like it would be incredibly helpful!

LeharLover62 profile image
LeharLover62

Hubby gets delirium when there is something wrong, usually a fever. Make sure there’s no infection or problem?

Also when his dopamine meds are too high. So def get back on what he’s used to with meds including timing…be very careful about accidentally increasing the dose and interactions with other meds that might do that (there are a lot as others have mentioned).

Hope he’s already out of the woods, best wishes.

Christina08 profile image
Christina08 in reply toLeharLover62

Thanks for the well wishes, I will query the infection possibility. I think he is starting to improve now he is back on his usual meds.. although I still need to ensure the timings are correct.

DianeF profile image
DianeF

Get a list of medications that should not be given to people with Parkinson’s. In the future talk and talk and talk about these with the surgeon, the nurses and the anesthesiologist before surgery. Hand out copies of the list.Make sure he isn’t given any of the wrong pain and anti nausea meds after surgery. If you can’t be there at the needed c/ l times , see what you can work out with friends ,family members, etc. it is ridiculous how ignorant medical staff are about Parkinson’s and sad that we have such a poor standard of care.I just had breast cancer surgery yesterday and I’m pretty sure they were all sick of me talking about anesthesia and medications, but they all learned a few things about Parkinson’s Disease and I held my ground. I didn’t have general anesthesia this surgery and feel almost normal today. Also, it was outpatient surgery so my husband was standing by with c/l afterwards.My Parkinson’s symptoms started immediately after a knee replacement 9 years ago which I believe corresponded to the anesthesia and the tons of anti nausea medication they gave me.

LeharLover62 profile image
LeharLover62 in reply toDianeF

Yeah this and also keep track of all the meds he got this time to be better prepared next time. (I always struggle with this part)

Christina08 profile image
Christina08 in reply toDianeF

Thanks for your reply. I think getting my dad back on his usual medication is really helping , although I need to be on top of the timing, so I will be in for all of his medication times if I can. It turned out the bag of his medication hadn’t even been brought onto the ward until two days after his surgery. In that bag were all of his Parkinson’s meds and a written list of the times they had to be taken etc. we went through his medications and times in great detail at his pre op appointment, but that clearly didn’t translate. I really don’t think they understand the importance of timing. although I do understand that they are busy. I must admit I hadn’t considered researching the medication that he shouldn’t take.I think you are so right to strongly advocate for yourself , given this experience I can see where I have been to passive on certain occasions, just assuming everyone knows better than me. I am glad to hear you are feeling good and I wish you a speedy recovery!

LindaP50 profile image
LindaP50 in reply toChristina08

This info is in the hospital kit I wrote about

Daughterdad75 profile image
Daughterdad75

my dad which has PD fell and fractured 6 vertebrae in May, the pain meds he was on caused hallucinations and delusions, they had to keep changing them til all he could take was tramadol and they up the milligrams on his serequel but I had to advocate for him the whole time, 1 week in the hospital and 3 weeks in rehab, also being in a different setting and off the normal routine can trigger things, you did the right thing, can’t leave all of it up to the doctors and nurses, they don't all understand Parkinson’s

Christina08 profile image
Christina08 in reply toDaughterdad75

Thanks for the reply, I had not considered the pain meds being an issue for my dad. It really is a learning curve, realising that I really have to stand up for myself and my dad.. repeatedly! I hope your dad is doing well now.

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