Judge Nick Mostyn warns us at the beginning of this week’s episode of Movers and Shakers that this is one “where the laugh/moan ratio does not favour hilarity.” And I think you can hear in our voices that discussing palliative care and the legal steps we need to take before, as the judge puts it", “shuffling off this mortal coil” doesn’t exactly fill us with glee. But, as so often, brilliant guests give us a whole set of new insights into what might sound like a gloomy subject.
I think these conversations should happen whatever our circumstances are . We have no idea about our future health, and people used to be afraid to discuss , wills and power of attorney.
We did ours when we hit 60’s and it’s a relief to know whatever happens our decisions will be listened to . I have chronic health issues and am very grateful my husband knows my wishes . A great subject to discuss Rory .
Speaking as a daughter of someone with Advanced Parkinson’s, I understand that talking about advanced PD can be emotionally very hard to do and I thought it was brave that you have made this episode. If you can bear it there may be more advanced PD symptoms that could be looked it the future but I understand that might be very hard. We find Dad’s Parkinson’s Nurse probably looks at Dad’s health in the round so may do aspects of the role the consultant discussed. No one’s spoken to us about palliative care apart from at a crisis moment and it wasn’t followed through as events went a different route. I cannot emphasise enough the importance of getting all the paperwork like POA and wills and care wishes all arranged / talked about in good time. My father instigated the POA applications 8 years before we needed to take over as attorneys. Through taking on the admin for my father’s affairs I’ve learnt a big lesson for myself in making it easier for loved ones with preparing to take over our paperwork (e.g. throwing away old paperwork for redundant long-closed accounts etc in advance to avoid confusion! Making lists etc.) As others have said this is important for all of us, not just PD sufferers. From my own experience with my Dad, I wonder if the cognition difficulties some experience with PD may mean this paperwork prep / consolidation in advance can unfortunately become quickly difficult to do - it became hard for our father a long time before he lost capacity.
Excellent, as always, thank you. As someone else has said, while your conversations are ‘Parkinson’s-specific’, they are so interesting and relevant for the rest of us.
As someone who has been involved in the end of life care of two of my closest friends palliative care, as described by Dr Sabrina Bajwah, was never an option proposed for them. They were basically offered no palliative care options which is a failure of the Australian medical system all around. Like the UK's it is under extreme pressure, especially following Covid, and they offer only basic options if the illness is life threatening or if you are over 80. I can't blame them. All health systems need people strong enough both mentally and physically, who can cope with these issues. Many join a health system to save peoples' lives, not to assist in providing care until their ultimate demise.
At first I didn't like the sound of this edition on palliative care but so glad I listened to it. I have been experiencing back and abdominal pain for years, worse than PD symptoms and impacting on the quality of my life.
In less than a week my GP has referred me to our local service, I have spoken to a specialist nurse and have an appointment with a consultant in 3 weeks.
This is after waiting more than a year for an appointment with the pain management team.
Thank you so much for this episode and all the others too.
A great episode, and I really liked the emphasis on this being 'liberating' and an opportunity for people to make sure their wishes are being respected. As Judge Mostyn highlighted at the end, doing some of this planning in advance means when 'the end' does come, the focus can be on comfort, dignity, and doing what you love, rather than talking about finances etc.
Difficult discussions are necessary to ensure we all take the worry away from our loved ones and carers. A sad bad very necessary uncomfortable family chat is best done sooner than leave too late
Excellent edition not just for those with Parkinson’s but for all of us who are three score years and ten plus. Some really relevant and good advice.
I think these conversations should happen whatever our circumstances are . We have no idea about our future health, and people used to be afraid to discuss , wills and power of attorney.
We did ours when we hit 60’s and it’s a relief to know whatever happens our decisions will be listened to . I have chronic health issues and am very grateful my husband knows my wishes . A great subject to discuss Rory .
Speaking as a daughter of someone with Advanced Parkinson’s, I understand that talking about advanced PD can be emotionally very hard to do and I thought it was brave that you have made this episode. If you can bear it there may be more advanced PD symptoms that could be looked it the future but I understand that might be very hard. We find Dad’s Parkinson’s Nurse probably looks at Dad’s health in the round so may do aspects of the role the consultant discussed. No one’s spoken to us about palliative care apart from at a crisis moment and it wasn’t followed through as events went a different route. I cannot emphasise enough the importance of getting all the paperwork like POA and wills and care wishes all arranged / talked about in good time. My father instigated the POA applications 8 years before we needed to take over as attorneys. Through taking on the admin for my father’s affairs I’ve learnt a big lesson for myself in making it easier for loved ones with preparing to take over our paperwork (e.g. throwing away old paperwork for redundant long-closed accounts etc in advance to avoid confusion! Making lists etc.) As others have said this is important for all of us, not just PD sufferers. From my own experience with my Dad, I wonder if the cognition difficulties some experience with PD may mean this paperwork prep / consolidation in advance can unfortunately become quickly difficult to do - it became hard for our father a long time before he lost capacity.
Excellent, as always, thank you. As someone else has said, while your conversations are ‘Parkinson’s-specific’, they are so interesting and relevant for the rest of us.
As someone who has been involved in the end of life care of two of my closest friends palliative care, as described by Dr Sabrina Bajwah, was never an option proposed for them. They were basically offered no palliative care options which is a failure of the Australian medical system all around. Like the UK's it is under extreme pressure, especially following Covid, and they offer only basic options if the illness is life threatening or if you are over 80. I can't blame them. All health systems need people strong enough both mentally and physically, who can cope with these issues. Many join a health system to save peoples' lives, not to assist in providing care until their ultimate demise.
At first I didn't like the sound of this edition on palliative care but so glad I listened to it. I have been experiencing back and abdominal pain for years, worse than PD symptoms and impacting on the quality of my life.
In less than a week my GP has referred me to our local service, I have spoken to a specialist nurse and have an appointment with a consultant in 3 weeks.
This is after waiting more than a year for an appointment with the pain management team.
Thank you so much for this episode and all the others too.
A great episode, and I really liked the emphasis on this being 'liberating' and an opportunity for people to make sure their wishes are being respected. As Judge Mostyn highlighted at the end, doing some of this planning in advance means when 'the end' does come, the focus can be on comfort, dignity, and doing what you love, rather than talking about finances etc.
1. You call her Samina at one point, though her name is Sabrina!
2. Should "Supportive Care" be included in the PD Charter you are producing?
Difficult discussions are necessary to ensure we all take the worry away from our loved ones and carers. A sad bad very necessary uncomfortable family chat is best done sooner than leave too late