To launch PSP & CBD Awareness Week 2020, we held a Faceook Watch Party of the film ‘Swallow’.
Swallow was written by Freya Hannan-Mills, about her experience of caring for her grandmother who had PSP.
Freya introduced the watch party on 20 July and here responds to some of the many questions people asked:
Do you have plans to write and film a follow up?
I’d love to develop the short into a longer piece that delves into the whole family – yes that’s something I’m continually tinkering with.
How do you feel/reflect back about PSP now you have completed a script (play and film)?
I think it’s a totally life changing experience for everyone involved – it’s emotionally exhausting and physically demanding on Carers and isolating too for everyone because of its unpredictability.
Was it emotional seeing your script and experience of PSP come to life as a play and then a film?
Yes very – when we performed the play in London I also acted in it as Tilly the teenage daughter. I know my Mum found it difficult to watch in rehearsals sometimes.
How did you get through PSP/caring for someone with PSP?
In the moment it’s just so full on that you are are in a constant state of hyper vigilance it was only when Margaret went into the Nursing home that Mum and I realised how exhausted we were. I definitely think that carers’ health especially sleep should be monitored alongside patient needs.
Will your film be available DVD?
There are no plans I don’t think to produce a DVD -it is on the Directors Library so is available to watch there for free.
Are there any tips you would share about caring for someone with PSP?
Do a two LPA’s ( lasting power of attorney health/wealth) as soon as possible after diagnosis. If you don’t have a health LPA in place it is very difficult to negotiate and advocate in healthcare settings.
My Mum would always ask for any requests on a hospital ward following an admission (eg for side rails on a bed to be ‘formally’ noted in the patient file) and then would let the ward manager know that as a way of ensuring continuity of care post discharge in the home setting that on discharge she would be processing a subject access request for a copy of the ward file and all notes from the admission period -it was remarkable how effective this would be. Also it often highlighted omissions that could be dealt with more effectively by Mum.
Margaret was peg fed and Mum would always ensure that on any emergency hospital admission she gave the ambulance crew at least 4 days worth of feed. Invariably it would be an admission on a weekend and the dieticians wouldn’t be in until Monday and if the feed didn’t come in with the ambulance the ward would not be able to start feeding.
As Margaret’s eyesight deteriorated her sense of smell was heightened. We bought a aroma mist machine you put essential oils and water in and it pumps out a mist – it’s lovely very soothing ours had lights too that slowly changed. We also did lots of hand massages and bought really nice hand cream. In fact everyone who visited Margaret would do hand massages , she had the most beautiful hands!
I know one of the most beneficial and important aspects for Mum was connecting on a PSP forum with a family that were also experiencing what we were and at an incredibly similar stage -having someone else to offload to was so important and I know how much it helped my Mum . We are indebted to them, and there is a bond created in going through this shared experience that endures.