In the shoes of … | Ken Howard, caring for his terminally ill parents

I recently spent a great week in Scotland. I am hoping to find time to write a blog about this – not least the Sherpa Union (very exciting new development around self-leadership, building networks  and peer support!) and two Whose Shoes? workshops – one for NHS Education for Scotland and one launching the Spotlight series for Alzheimer Scotland.

We chose to climbKen with bagsThe main focus of the week was the ‘We chose to climb’ international conference in Glasgow where Ken Howard and I did a couple of TED-style talks. I should theoretically say that we did a ‘repeated’ talk – but when Ken and I work together it is all a bit off the cuff. The two sessions were ‘similar’. It is much more fun to mix things up a bit. 😉

In our presentation, we talked about our friendship and the reciprocal support we give each other. Ken has a much better sense of direction than me and is also much better at carrying the heavy bags! Living with younger onset dementia, people can have different and very individualised problems. One of the things Ken struggles with is reading and writing so I naturally help him with these, including the practical arrangements for the various speaking assignments and workshops we do together.

Ken told me lots of stories and I promised Ken I would write up some things he wanted to share. We sat together in the foyer of the Grand Central Hotel in Glasgow and Ken told me the simplest, most powerful story – summing up a lot of ‘what is wrong’ with care services and why we do the work that we do…

Ken's Dad

The tale of two beds

Mum had been ill for a long time but she became very poorly whilst I was away at the European Alzheimer’s conference in Glasgow in October, 2014. My family, in my absence, arranged for a hospital bed to be delivered because Mum could no longer get out of bed, wanting to avoid pressure sores and such like.

The bed was delivered. The guy who delivered it told my wife and son that the hospital bed would not go upstairs. It had to go downstairs. Even though there was a through-floor lift.

So my wife and son believed the delivery man and they allowed him to put the bed downstairs in the living room in front of the fire. The living room became Mum’s bedroom. We couldn’t put the fire on because there was no other space for the bed. Dad, who refused to leave Mum’s side, then camped on the sofa. For the next six weeks, he slept on the sofa under duvets – not good for an 89-year-old!

All care including the commode, intimate washing etc took place in front of everyone. Mum, who was always reserved in nature, lost her dignity as she was washed down in the living room in front of everyone else. She became more depressed and I’m sure it hastened her demise.

When the bed was in the lounge, there was a crash mat next to it in case Mum fell out of bed. Apparently side-bars for the bed were deemed to be too risky as people can get trapped in them. Nobody considered Dad’s needs and he regularly tripped on the crash mat.

It seems that a risk assessment is a case of covering someone’s back, not working out how well something will actually work  for the whole family.

I had believed the story that the bed wouldn’t fit in the lift … until I saw it dismantled when it was taken away. I didn’t realise that it came to bits!

A few short weeks later Dad became critically ill. When he was released from hospital, I had arranged for him to have a hospital bed delivered along with all the other aids needed to help him to cope at home and for us to cope with him. I refused to allow them to discharge him from hospital until we had a safe environment for him. A friend was helping me and told me that phrases such as “safe discharge” and “safe environment” were the things that tick the boxes. She had also told me that once my parents had left hospital, we would get no more support other than what had been arranged so it was important to arrange everything while Dad was still in hospital.

So the same guy came to deliver the bed. I knew it was the same guy as his opening remark was “Here again, is it? I came here before.” Again he announced that he had a hospital bed to deliver and insisted that it wouldn’t go upstairs.

“Unless you can make it go upstairs, please take it away. I’m not having my Dad cared for downstairs and if he hasn’t got a hospital bed he can’t have a safe discharge from hospital.” So the man then realised that he could put the bed in the lift and take it upstairs and it took him five minutes. So my Dad had a hospital bed in the bedroom which had been prepared for him – with his own TV, and rise-recliner chair and space for us to sit with him or for him to be on his own. The rest of the family had use of the living room and Dad had his own room. He was never paraded naked in front of the household. He retained his dignity to the end of his life. We could carry him onto the commode in the privacy of his own room. The lift allowed him to join the family in the lounge – with the fire on.

This all happened through the winter. In my Mum’s case it had a huge impact on a precious life. So I ask the question: Who is responsible for the decision about where the bed goes?

  • Is it the social worker for not asking where the bed should go or offering any choice?
  • Is it the delivery driver who wants to get rid of it and get out quick?
  • Or is it our fault for allowing ourselves to be bullied?

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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. http://nutshellcomms.co.uk
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5 Responses to In the shoes of … | Ken Howard, caring for his terminally ill parents

  1. pippakelly12 says:

    Ken and Gill – this is such a good blog and will resonate with many, many people. And I like your questions at the end. It’s no use just moaning, we have to use our experiences to make change (why am I bothering to tell you two that?!) It’s reminded me of something a little similar that happened to my own dear dad involving a hospital discharge and flights of stairs. I think I may blog about it – after I’ve put in a call to the hospital who promised they’d improve things to see if, seven years later, that’s actually happened. I like to think that together we’re joining dots and, hopefully, improving things one step (or dot) at a time.

    Liked by 1 person

  2. pippakelly12 says:

    Ken, the pictures have just loaded onto the blog and I have seen the tweet about your dad. I am so very sorry. He would have been inordinately proud of you. All the very best to you and your family and I hope to see you again soon. Love Pippa x

    Like

  3. Eleanor Sowerby says:

    The delivery of beds is managed by the community equipment stores and dependant on their health & safety policy some will deliver beds to an upstairs room and some won’t. I used to be faced with this challenge in my previous role as discharge co-ordinator in a hospice. Generally I believe that it’s all about listening and trying to ease the transition from acute/hospice care to home for the individual and their family. Be it in relation to equipment needed, support once home, medication, advice on varying aspects of the transition home.

    It’s a really frightening move for both the individual and their loved ones to opt out of the security of 24/7 care to the additional responsibility that can shouldered by loving family that want to support their loved ones decision to be cared for at home. My belief is always to help empower through advocating sometimes through experience of the discharge process and role, giving options etc..at the end of the day we all want it to be a success. I’m sorry that you had such a bad experience with your Mum’s discharge back home, however through your experience you were fortunate to be able to advocate for your Dad’s discharge home. Hopefully through voicing experiences of this kind change can surface to create a complete person centred approach to help streamline services to empower lives. Elley 🙂

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  4. It is definitely not the family’s fault as this is a new experience for them and they trusted the professionals. It appears to be a fault of professionals for not considering the human element i.e. what is important for the life of the person receiving care and the family caring at home. This should be a collaborative conversation not a decision taken by a delivery man.

    I was placed in a similar situation some years ago and learned the hard way – but it’s not right that someone, already emotionally stressed about a parent who is terminally ill, has to battle in their own home for basic quality provision, personal dignity and consideration of views.

    Collaborative conversations need to take place as a core component of any discharge planning and provision with all views respected and considered for the quality of life of the patient and the family.

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  5. Pingback: In the (cricket) shoes of Alison Cameron… | As she is bowled over… | Whose Shoes? A catalyst for change in health and social care

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