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Posts Tagged ‘Hospice’

As you will recall, I was invited by Dallas Dixon, in America, to write a piece for his blog, on Elder Abuse. I would like to share this comment someone left on it-
‘Prevention begins with awareness. Books and articles like Suzan’s really do make a difference. How amazing that in the midst of her own pain of losing her mother, Suzan is reaching out to help others through spreading awareness about elderly abuse. I enjoyed reading this blog, and appreciate Dallas Dixon for making this information available.’  http://goo.gl/QavPgo

 

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A complete stranger, a reader, got in touch with me via my website.

‘Hello Suzan, You don’t know me, but I have read your book – ‘Beyond My Control: Why the Health and Social Care System Need Not Have Failed My Mother’ and wanted to tell you how much it has helped me.

My mother was in a care home and there were so many things that caused me anxiety and anguish about her care, I really didn’t know who to turn to at first, however, after reading the advice in your book I was able to get things moving.

There were so many issues we had to address that I was always expressing concern when things were not right for any of the residents, let alone my mother.  Eventually, they realised that I was not going to let them get away with bad care.  Again, we followed the advice in your book-we didn’t always visit at the same time or on the same day. And we saw different things happening, not all good!

I told the homes managers of my concerns. She was useless, so I did what you say in your book, I put my concerns in writing and I kept a copy. I thanked staff when they did well and told them when I knew [after reading your book] that things were not right, i.e. expecting mother to sleep on a wet, urine stained mattress [which smelt awful!] and be put to bed after tea time [although she didn’t always eat her tea, which meant she had to go right through until 7am the next morning to have something to eat]. She was put to bed at 6.30pm and lights out].

Similar to the good nurse in your book, this home had one excellent carer. She gave excellent care, empathy and understanding. She was with us at the end of mothers life having just completed a 14 hour shift, but didn’t go home as she could see that mother was nearing the end.

Thank you for sharing your story; it helped us at a time when we really needed it. The book helped my mother have a dignified death. Thank you. I am so sorry your mother did not have a dignified death. She would be proud if she knew what you were doing to help others. I will be thinking of my mother and your dear mother tomorrow, on Mother’s Day. I am shedding tears as I write. God Bless xx’

[Names omitted to protect identity].

My mum left me with a mission. A mission to ensure that no one will ever, ever suffer the way she did. A mission to get the message out there on what is good care and bad care and to raise awareness on how to report concerns if you or your loved one is receiving poor care, in a care home, nursing home, hospital or receiving care at home. ‘Beyond My Control: Why the Health and Social Care System Need Not Have FailedMy Mother’ is available in Kindle and Paperback and can be bought from various websites including:BMC jpeg

Amazon http://goo.gl/8wq4wo

My publisher’s website, Hammersmith Books ow.ly/uFIxW

4/5* reviews on Amazon ☆’Beyond My Control: Why the Health and Social Care System Need Not Have Failed My Mother’ ☆http://goo.gl/dYiXJl

But you know it’s not about how many copies is sold. It is about getting the message out there, so why not ask your library to get copies in

Beyond My Control: Why the Health and Social Care System Need Not Have Failed My Mother

ISBN no: 978-1781610282

 

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Filling The Hole at the End of the Road: Julie Line talks about her Dementia Journey and life afterwards

http://www.dementiajourneys.com/wp/2013/05/28/dementia-journeys-filling-the-hole-at-the-end-of-the-road/

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As a society we do not discuss death and dying openly. Today I delivered training on Person Centred Support and part of this included supporting individuals to plan for their future well-being and the importance of supporting an individual to plan for their end of life care where appropriate.

Here is an extract:

Being person-centred [1]

The national End of Life Care Strategy for England defines, a good death‟

as:

o being treated as an individual, with dignity and respect

o being without pain and other symptoms

o being in familiar surroundings

o being in the company of close family and/or friends.

We plan our life, why not plan our death?

We want a good death. We want …

  • Advance care planning[2] drawn up, which specifies my wishes as the end of my life approaches
  • Information about the dying process and the services available
  • To choose where to die, hospice, hospital or home [help is immediate in hospice and hospital]
  • Family and friends around us
  • Music of our choice playing in the background
  • Scented candles burning
  • Staff that have been trained so they can talk to us about our wishes and choices at the end of life
  • Competent staff, who treat us with dignity and respect [even if we appear to be unconscious]
  • Staff who speak to us and not down to us
  • To ensure that equipment such as syringe drivers and palliative care kits are available [if required]
  • A personal alarm if any of us become frail
  • Technology  so we can Skype my doctor, nurse etc. if we have any worries.

Decisions about my funeral:

Buried or cremated? Where do we want to be buried or cremated? If cremated where do we want my ashes scattered?

Do we want flowers, readings, music at our funerals?

What clothes do we want be dressed in. What jewellery and/or make up do we want to wear?

Decisions for after funeral:

A wake, or a celebration? People to be happy not sad.

After the funeral, drink, food, a celebration, memorial?

How we would like to be remembered, a plaque on a bench, a rose tree, a trust set up in my name?

Making a Will:

Some felt that if their late relatives had made a Will this would have made things a lot easier at the time of losing a loved one. Without the Will there had been difficulties on knowing what possessions the late relative wanted to give to whom.

References

[1] Department of Health (2008), End of Life Care Strategy: Promoting high quality care for all adults at the end of life‟, London: Department of Health https://www.gov.uk/government/publications/end-of-life-care-strategy-promoting-high-quality-care-for-adults-at-the-end-of-their-life

[2] Advance Care Planning

http://www.endoflifecare.nhs.uk/assets/downloads/pubs_Advance_Care_Planning_guide.pdf

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