Sandiemac Posted July 3, 2017 Posted July 3, 2017 I have a thread running elsewhere (Stephen's Story) but I wanted to let you know about the support we are getting from our local hospice in the hope it might encourage someone to contact their local hospice in case they were unaware of the help available. I know Marmalade is a fan and has benefited from their resources.Stephen is stable at the moment and at our most recent visit to the oncologist at the beginning of May we were asked by the Macmillan nurse if we wanted the hospice to contact us. Like most people I associated hospices with end of life but they are much more than that.Anyway, briefly, Stephen is now attending a Wellness day weekly where he gets personal attention from the nurses (resulting in them arranging for medicines they thought would be helpful, for example), meets other people with life-limiting illnesses, has lunch, and a good natter. They also arrange for physio visits, entertainers and craft work. This means I get a "day off" to do the weekly shop, mooch around the shops and generally have some "me" time.Today he started their 8-week physio cum exercise course designed to make him more mobile (he broke his hip in March) and build up his stamina and muscles. First impressions are excellent. He came home resolved to exercise every day (they recommend 30 minutes per day) and already he is more positive and looking forward to things he might be able to do at the end of the 8 weeks.As other people have mentioned, it's so easy to get depressed and I really believe the hospices can help with this. I hope this helps.Sandie x
Veema Posted July 3, 2017 Posted July 3, 2017 That sounds great...we weren't offered any palliative care until Nige was just too poorly to do anything. I think with pancreatic cancer, these things should be made available on diagnosis for people to get the best use from them.I hope Stephen continues to make progress and starts to feel better in himself.Vx
Proud Wife Posted July 4, 2017 Posted July 4, 2017 Lovely positive update. All the very best to you both xx
PCUK Nurse Dianne Posted July 5, 2017 Posted July 5, 2017 Dear Sandie,Thank you for posting this fabulous thread. This is often a discussion point on our support service and also an aspect that we do encourage as part of discussions at our support and information days.You are absolutely correct and historically we find that people have associated 'Hospice' with last days of life, however it is much more than that now. Many hospices provide some fabulous facilities and services, including day services, relaxation and holistic treatments (massage, reiki, aromatherapy), counselling and also the experience of meeting others in similar situations. There is also the opportunity to have 'respite visits' for optimisation and management of symptoms, and this may often only require a 2-3 day stay to ensure that symptoms are best managed. An additional benefit is that many hospices also provide support for carers and family members, and we have heard of some hospices providing a drop in session for bereaved families.We agree with you Sandie, an absolutely amazing service and we do try to encourage as many people as possible to engage with their local hospice for all of these reasons.As many of you may know, often the community nurses will be based within a hospice situation, and there may also be a 'hospice at home' service should you need this at any time when the patient is not able to leave the house.Thank you Sandie for sharing your experience and encouraging others.DiannePancreatic Cancer specialist nurse.
Quickasyoucan Posted July 6, 2017 Posted July 6, 2017 Our local hospice have our family's eternal gratitude both for the exemplary end of life care they provided for dad and for the symptom management stay he had previously plus the home visits from their lymphedema specialist. I also saw a councillor there who helped me with the loss of Jake. They too provide a day service although we did not use it. Mum also previously saw a physio there for her mnd. The hospice was a place of positivity and peace and I would encourage anyone to use their services for symptom palliation and emotional support. Definitely not just a place to die but a place to live well too.
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