This week’s episode of Movers and Shakers is about an issue which is understood by just about everybody who has Parkinson’s - and apparently by hardly anybody working in a hospital - the importance of taking your drugs on time. That becomes particularly difficult in a place where you might assume that medical professionals would ensure good timekeeping - a hospital.
I’ve to say this is a highly valuable piece of writing. My father had Parkinson’s and the issue of medication was a constant struggle with both the hospitals and even within his nursing home. A member of the family would often need to rush into these environments because my father was not receiving his medication correctly or none was even provided to him. So frequently we found ourselves explaining what and when a particular medication was to be administered to him. In some cases we had to actually provide training to medical professionals ourselves. On one particular occasion during a hospital visit one of his older grandchildren had to actually write down precisely what and when he was to receive his meds. It made a difficult situation somewhat frustrating, worrying and frankly at times was so utterly unprofessional.
With my father being in hospital for much of last year and frequent further emergency admissions from rehab we had tremendous difficulties with meds, exacerbated by rule that only meds dispensed from hospital pharmacy could be used (not ones we’d brought in) and then issues with stock, long delays, staff not administering on time (‘computer says no!’) and importantly not being checked if they’d been swallowed so face/fingers all stained orange and meds not being absorbed…. or taking meds with yoghurt so could be swallowed. Even after reminding staff daily, requesting all info and concerns being added to notes and plastering signs on wall it was a daily battle. There has to be resolution on this as I believe it causes PD patients to decline unnecessarily. Thanks for highlighting this.
I am now like a terrier that has caught a rat, and I'm not about to let go either.
On Tuesday (2nd Apr) I went into the hospital armed with my Spreadsheet (again, they could paper the walls with it now) and this podcast in print. I asked for the pharmacist to come and see me,showed her the podcast and the spread sheet,and explained what was happening to my partner, and why, and please would she sort this for me.
We both sat in the nurse's station, went into his meds on the 'computer, and she duly changed all I wanted and needed changing. It meant 6 lots of meds per day as opposed to the 3 he was being given, but she told me that she was so pleased to have done this for me, and that it should now be sorted.
Thursday I went back in, and a note on his door stated he was to be medicated at 8, 12 & 6 - nothing had changed. I grabbed the nearest staff nurse, and asked why he hadn't had PD meds at 11:30am, an hour before lunch?He knew nothing of this, so I asked him to let me medicate him now, 10 minutes late, but I intended to hold up his lunch for the hour.
After/during lunch he would normally have a fit, eyes rolling into the back of his head, stiffening and jerking wildly, his BP would be through the floor. There was nothing, he was fine, best I have seen him in ages, I could have wept, this is how he should be. The staff nurse was amazed.
Tuesday I am having a meeting with the PD nurses to see about them getting this looked at for all PD patients in this hospital. Not letting go!
This happened to me about a year ago. I was in hospital for a week and had to make the nurse set the alarm on her phone to match my pill schedule. the issue was it was a different nurse every day. So it was a daily battle.
So very pleased to read that I am not alone here. I am a carer & long term partner for a PD patient who has now been in hospital for 5 months., and it is all going horribly wrong. I have frequently mentioned the link of meds to food, even gave them my spread sheet of how his meds needed to be managed, all is listened to, and then ignored. He is deteriorating rapidly now, lost weight, hallucinating, cannot stand up without BP dropping through the floor. + +. And still they won't do his meds right. He has been on a waiting list for a care home now for 4 months, but there is a huge lack of EMI sections, and so he waits on, and on. So cruel. But thank you for covering this, at least you have confirmed I am right - a print off of this article will be in my hand at visiting.
Is this a good time to ask for the elimination of changing to British summer time and back. It really complicates pill timing especially in nursing homes.
I’ve to say this is a highly valuable piece of writing. My father had Parkinson’s and the issue of medication was a constant struggle with both the hospitals and even within his nursing home. A member of the family would often need to rush into these environments because my father was not receiving his medication correctly or none was even provided to him. So frequently we found ourselves explaining what and when a particular medication was to be administered to him. In some cases we had to actually provide training to medical professionals ourselves. On one particular occasion during a hospital visit one of his older grandchildren had to actually write down precisely what and when he was to receive his meds. It made a difficult situation somewhat frustrating, worrying and frankly at times was so utterly unprofessional.
With my father being in hospital for much of last year and frequent further emergency admissions from rehab we had tremendous difficulties with meds, exacerbated by rule that only meds dispensed from hospital pharmacy could be used (not ones we’d brought in) and then issues with stock, long delays, staff not administering on time (‘computer says no!’) and importantly not being checked if they’d been swallowed so face/fingers all stained orange and meds not being absorbed…. or taking meds with yoghurt so could be swallowed. Even after reminding staff daily, requesting all info and concerns being added to notes and plastering signs on wall it was a daily battle. There has to be resolution on this as I believe it causes PD patients to decline unnecessarily. Thanks for highlighting this.
I am now like a terrier that has caught a rat, and I'm not about to let go either.
On Tuesday (2nd Apr) I went into the hospital armed with my Spreadsheet (again, they could paper the walls with it now) and this podcast in print. I asked for the pharmacist to come and see me,showed her the podcast and the spread sheet,and explained what was happening to my partner, and why, and please would she sort this for me.
We both sat in the nurse's station, went into his meds on the 'computer, and she duly changed all I wanted and needed changing. It meant 6 lots of meds per day as opposed to the 3 he was being given, but she told me that she was so pleased to have done this for me, and that it should now be sorted.
Thursday I went back in, and a note on his door stated he was to be medicated at 8, 12 & 6 - nothing had changed. I grabbed the nearest staff nurse, and asked why he hadn't had PD meds at 11:30am, an hour before lunch?He knew nothing of this, so I asked him to let me medicate him now, 10 minutes late, but I intended to hold up his lunch for the hour.
After/during lunch he would normally have a fit, eyes rolling into the back of his head, stiffening and jerking wildly, his BP would be through the floor. There was nothing, he was fine, best I have seen him in ages, I could have wept, this is how he should be. The staff nurse was amazed.
Tuesday I am having a meeting with the PD nurses to see about them getting this looked at for all PD patients in this hospital. Not letting go!
This happened to me about a year ago. I was in hospital for a week and had to make the nurse set the alarm on her phone to match my pill schedule. the issue was it was a different nurse every day. So it was a daily battle.
So very pleased to read that I am not alone here. I am a carer & long term partner for a PD patient who has now been in hospital for 5 months., and it is all going horribly wrong. I have frequently mentioned the link of meds to food, even gave them my spread sheet of how his meds needed to be managed, all is listened to, and then ignored. He is deteriorating rapidly now, lost weight, hallucinating, cannot stand up without BP dropping through the floor. + +. And still they won't do his meds right. He has been on a waiting list for a care home now for 4 months, but there is a huge lack of EMI sections, and so he waits on, and on. So cruel. But thank you for covering this, at least you have confirmed I am right - a print off of this article will be in my hand at visiting.
Is this a good time to ask for the elimination of changing to British summer time and back. It really complicates pill timing especially in nursing homes.
Very interesting and useful info. TY.
I'm curious about having cataracts done when have PD. How much do they have to drug you up to stop the tremors or dyskinesia?? Anyone have experience?