Care & hospital stays

My partner of 29years was recently admitted to hospital after collapsing at home my main worry was do all nurses understand patients with Parkinson’s .as I have recently found out ,My partner named Dave was suffering with confusion seeing things and not really making much sense this the nurses didn’t seem to understand much about .Before going into hospital I made sure Dave had his tablets on time this I explained to nurses that it was so important to have his Parkinson tablets on time at home ,at home I would give Dave his tablets at 8am 1pm & 6pm so 5 hours apart .the hospital some how changed the timings to 6am 2pm 10pm why this happened we don’t know so when Dave was moved to another hospital for rehabilitation they were given Dave the same times which we only found out when he had to see the neurologist who pointed it out .Dave has been in hospital now for 6weeks and 5 of those weeks at the wrong times so we are not sure if this as added to Daves slow progress .He freezes when he stands and we are told by the physio person that Dave is slow and can’t take in commands very well .i am not sure even if the physio team understand Dave health problems we have asked if we can help Dave to move about when there are a few of us visiting him otherwise he is just sitting in a chair all day and making it uncomfortable for Dave to sit .We are told we can’t help him because of safety measures but we say if the physio are not given him exercise and we are not able what are we to do I am worried sick that the longer he is without proper physio the harder it will for Dave to walk and return home .any ideas please to what we can do to help Dave .

Please don’t let it slide. My dad was in hospital this year til recently. It started with a collapse due to dehydration, in hospital he got influenza and a chest infection and went rapidly down hill.
I was at EVERY visiting and monitored and made notes/took pictures and videos for evidence.
He uses black coffee (there is info on here about it) with his meds to help movement and speech. When on a strict timing with coffee/meds, food and water we saw a very big difference.
I also did physio with him, even if, when very ill, only leg/arm movements but I recorded it all. He improved on the ward, nurses were fantastic when I said re coffee/timing etc.
He was moved to a ward where he didn’t get the care. It was horrendous. I still recorded everything. He wasn’t getting meds etc. I went with my gut, called a meeting, demanded he was moved back to the original ward (would have been dead in days if not, lost 2 stone in less than 2 weeks).
The other ward was fantastic. I was allowed to make my own visiting hours (helped out on ward when possible and did lots of dad’s care). Huge improvement within first week.
Now home and doing great (on a very strict timetable). Had his first PD clinic since getting home and they can’t believe how quickly he has progressed but say that the strict timetable really helps, keeps them ahead rather than playing catch up.
Please trust yourself. You know him best. We protect them. If it feels wrong, don’t accept it.
I really wish you all the best.

Hi thank you for your comments .My problem with his medication as that it is being given late .imyself and Daves sister have complained and said Dave must have his Parkinson’s tablets on time .before he was given them at 6am 2pm 10pm .which was totally wrong I kept saying that the time was late .when we had an appointment with the neurologist she could not understand why his pills were late they should be given at 8am 1pm 6pm which is 5 hours apart ,when we went back to hospital to see the neurologist I pointed it out about the medication .I have noted when visiting Dave his Parkinson’s pills have been given at 10 past 6 pm …then another day 6.20 pm then today 6.25 getting later each time .what can we do to make sure they are given on time .makes me mad as Dave is struggling to even walk unaided no physio if he does get it is only less than 10minutes never staff around if they are they are looking down on their mobiles phone ignoring the patents.

When I had the issue re dad’s meds being given erratically, I spoke to the charge nurse and the staff nurse on his ward and said that I was prepared to come in and give him his meds at the required times if I couldn’t get a guarantee that they would be given as required. We all understand how busy wards can be and how short staffed they are, but actually, patients are easier if treated at the right times.
It had the desired effect on the good ward and actually later, I started doing his meds in preparation for him coming out, during the last week of his stay.
Since being home it’s made a huge difference with meds etc being consistent.

1/2 hr either way isn’t an issue as long as it’s not every time. The morning one at 8am definitely shouldn’t be late as it helps to start the day. Hydration, meds/coffee then food are essential to kick start a good day.

Ps dehydration definitely makes them more confused and prone to collapse (why my dad ended up in hospital).
We had the issue on the awful ward that all qualified staff were no where to be seen during visiting hours. I just didn’t leave until they appeared and I could speak to them (before I demanded a ward change).
If possible, even if limited physio there, if able to even get him up, out in wheelchair (even to the day room etc) it helps.
I took videos of things going on at home, took music in and the guys on the wards gave me their requests (no tv etc on ward) and let dad see to keep his interest. We took the dogs in to visit once a week

My partner was staying in a specialist neurological ward after brain surgery and even there, the staff didn’t seem to understand the importance of giving PD meds on time. What made it worse was that while confused after the operation, my partner took took half a day’s tablets in the space of an hour, so they then locked the tablets away so they could not be accessed even after they were due and my partner was no longer disorientated. My partner was given strong painkillers for pain while meds were off, when the consultant had not recommended them, and it seemed that the opioid ones stopped the PD medications from kicking in. We had to speak to the consultant to get the nurses to give only paracetamol.

I took to turning up at medication times and feeding them to my partner from a supply in my pocket. I felt like a drug dealer, and sometimes it was awkward with some of the nurses who didn’t like it that we had taken control of the meds, but it was the only way to get them taken on time. Towards the end of the hospital stay, one of the neurologists admitted that it was embarrassing that a specialist ward still couldn’t get the tablets taken on time.

Another problem we had was constipation. At home we eat loads of fruit and food with roughage in it, because L-dopa is absorbed in the gut: if you can’t go to the loo, it doesn’t seem to get through to be absorbed. The hospital food was low on fibre. I took dried fruit – apricots, prunes – and tinned prunes in to help with that problem.

I am not medically qualified so I can only say what worked for us. Which is, if you are sure what you are doing and can get there, give the tablets to your Dave. Just make sure you are there and that he hasn’t already been given them – if you’re there, you can see what is going on. Make friends with any of the staff who are sympathetic. If they see you are competent and helping Dave, and therefore them because you’re doing some of their job, they will let you get on with it. If the staff don’t understand PD, that’s normal, regrettably. And it is murder trying to get your head around it sometimes! But you do understand it, so please do take part in Dave’s care as much as they will allow and you are able to cope with. He is lucky to have such a caring partner, I hope you can find a way to make his hospital stay work more smoothly. I wish you both well.

10 April last year i went into hospital for a total knee replacement. I had spoken beforehand to the main surgical nurse who reassured me that they had dealt w/ PD patients before. I was diagnosed 5 years ago and i take the 3 times daily course plus a a night time sustained release dose. This has worked well for me w/ very little down time. I decided at last minute to not have general anesthesia as it takes so long to leave system. So, after the surgery, i was pretty well alert. My sister had come to be with me and she really had not been around me much since my diagnosis. The 2nd day when my pain med ball ran out i awoke to the pain and extreme tremors, almost seizure like. They gave me morphine and i slept but my sister noticed i still had tremors. Long story shortened, the hospital changed the times on my meds, including giving me my first carbi-levo dose and my thyroid medication w/ breakfast! I was not allowed by the hospital to bring in and take my own meds. (I have learned since that, legally, we can sign a waiver to allow this. Check regulations to see if this is possible where you are. The hospital won’t tell you.) The nursing staff was very caring but whoever was in charge of arranging med scheduling was clearly ignorant. My recovery from the surgery, the limitations put on my PT schedule by our medicare system and the total lack of awareness of PD associated aftercare meant that i am just now, more than a year later, making a recovery from my procedure. I think the various organizations that focus on PD awareness need to address the lack of knowledge in the general medical community sooner than later.

More Hospitals are becoming aware that Parkinsons patients have to have their medication on time. I don’t know if there is a Parkinsons Nurse at your Hospital but there is a new campaign from Parkinsons UK
called ‘GET IT ON TIME’. I am amazed at how little most of the Nurse know about Parkinsons. I expect your Partner is getting his meds. when the nurses do their medicine round - 2pm to 10pm is not good enough I would check when you visit if he has had his medication and give them to him yourself…When my Husband was in Hospital not getting enough Physio I arranged a private physio (it was over a bank holiday) though he had to do the exercises in bed.Paranoid about Health and Safety! I regret that I didn’t speak up more and suggest I was going to take my Husband home then I think you might get more answers. Good Luck.

It seems that a lot about dealing with PD is becoming familiar for what works best for each individual and adjusting until you get the best out of meds, food, hydration and physio. Funnily enough, we as the unqualified, tend to know more and be more aware than the qualified, in a lot of cases. Scheduling is imperative so never playing catch up with meds.

Good luck.