In the shoes of … | Jane Gilliard – Daughter, retired dementia care professional; and now supporter to and advocate and attorney for her father

Whose Shoes?® is conversational. The tools and the whole approach look at issues from different perspectives, aiming to inspire lightbulb moments which drive people to work together for positive change, realising that we all have a part to play and that leadership is no longer about traditional hierarchies. We can all take ownership and contribute in our own particular lives and job roles.

Our ‘in my shoes’ blog series takes the same approach, slowly building the big picture like a jigsaw puzzle. No-one knows how many pieces the big picture has – but each piece adds a new insight. The holistic picture of what good quality of life looks like for people and how different health and social care approaches support or hinder this. The good the bad and the ugly – real stories which prompt others to say “that happened to me too” … or better still “We had a better experience. This is what happened to us – something simple and good that could be replicated elsewhere!”

Twitter is a great way to promote and share these conversations, bringing new people in and telling previously untold stories. This blogpost arose from one of those conversations. When Jane Gilliard commented on the excellent care her Mum had received, the lovely Richard Humphries (who has been a wonderful Whose Shoes? champion) brought it to my attention. Jane agreed to write her story – a very positive End of Life story from a carer’s (daughter’s) perspective. We both saw a strong link to the very popular blogpost written and published anonymously : “In the shoes of a GP… reflecting 0n End of Life care”

So, in the Twitter conversation, Jane said “I must get my piece to you. It gives the carer’s view of a similar situation. And she did…

Jane GilliardIn December 2010 my mother suffered a stroke.  After rehabilitation, she made a good recovery physically, but she never fully regained her cognitive function.  Over time this deteriorated and it was clear she had vascular dementia.  She had always been the social organiser in the household and now unable to carry out this role, it rapidly became clear that my father too had difficulties.  Shortly after my mother was assessed and diagnosed with vascular dementia, my father was also assessed and diagnosed with Alzheimer’s disease.

Jane's Mum & babyFast forward to October 2013.  My mother was by now very disabled by her dementia.  Despite our best efforts to engage her, she would sit most of the day in her chair, with her head in her hands, staring at the floor.  She and my father had earlier made it clear that they wanted to remain in their own home – my mother had repeatedly told me that she wanted to die there.  They have a wonderful carer called Wendy, whom we employ directly.  Wendy visits them 4-6 times a day and does whatever is required.

My mother started to refuse food, and then drink.  Wendy called the GP and there was talk about admitting my mother to hospital for rehydration.  Wendy asked for a further 24 hours to try to persuade my mother to drink – and with her gentle encouragement, my mother started to drink small amounts and to “eat” Complan.

I rang the GP and had a very helpful conversation (I have a Lasting Power of Attorney for Property and Finance, and a second one for Health and Welfare for each of my parents).  We agreed that my mother was not to be admitted to hospital, unless it was for a simple emergency which could be treated within 48 hours and she could be returned home.  We discussed my mother’s views about what she considered offered quality of life, and the GP said she would record our conversation on my mother’s records.

Wendy began to have difficulty helping my mother to get out of her chair.  She rang the Independent Living Team – a joint health and social care initiative.  A physio and an OT did a joint visit to assess my mother and agreed that she should have a rising recliner chair.  It was delivered 3 days later.  My mother leapt out of her chair to greet the delivery man!

The following week, I visited to take my father to hospital.  Wendy told me that they hadn’t yet had to use the rising function of the chair, but they knew that a time would come when it would be useful.  And beyond that, there would be a time when they would need a hoist and a hospital bed in order to continue to support my mother at home.  At 11:15 that morning, I left with my father for the hospital.  At 1 pm we left the outpatients department, and I found a message on my phone to say that they hadn’t been able to get my mother out of her chair and had requested a further assessment visit.  An hour and a half later, the OT and physio had revisited to reassess.  They agreed that a hoist and hospital bed were needed, and it was delivered later that afternoon from the depot, which is nearly an hour’s drive away.  In less than 5 hours, my mother had deteriorated, been assessed and the necessary equipment to keep her at home had been delivered.

The following day she was about the same, but the day after she had deteriorated further.  The GP visited and agreed that a “just in case box” should be delivered before the weekend so that Wendy could continue to care for my mother at home.  My mother complained of pain in her back and the GP gave her a morphine patch, which relieved the pain and made her sleepy.  That evening my mother fell asleep and she didn’t wake the next morning – the most gentle of deaths.  My father was with her the whole time.  Wendy and her colleague provided all the necessary care.  The health and social services had worked together to help my mother achieve her ambition of dying in her beloved home.

I’ve worked in health and social care for well over 30 years, and was delighted and thankful to find that the systems can work well together for the benefit of the person with dementia and the family.

My father says he hopes he can go the same way when his turn comes, and I’ve already had that conversation with his GP, the hospital doctors, the social worker and with Wendy.

Lovely to post such a positive story. Isn’t it great when the whole system joins up to deliver things that really, really matter to people!

About Gill Phillips - Whose Shoes?

Passionate about personalisation in health & social care. Creator of Whose Shoes? - an imaginative approach to helping people work together to improve lives.
This entry was posted in Blogs, community engagement, compassion, dementia, Guest blog, health, personalisation, public sector, safeguarding, well-being and tagged , , , , , , , , , , , , . Bookmark the permalink.

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