Walk a Mile in My Shoes

A mate of mine, a consultant geriatrician, was and is a kind, thoughtful and skilled practitioner who deals with his patients with respect and reflection.

He listens, hears and responds and genuinely cares. However, I remember the time he contracted conjunctivitis for the first ever time. It was horrible: uncomfortable, mildly disfiguring, and hugely irritating. He was contrite – he remarked that he had prescribed medication for conjunctivitis countless times and thought it was a minor problem which his patients moaned about too much, until he felt the itchy, distracting, impairing mess of it!

I am also guilty! In the past 30+ years I have met, worked with, sincerely cared about and supported countless people with disabilities of all sorts. I have also had the odd bad back, but it wasn’t until the past few weeks when I have experienced real disability because of a dodgy knee that I have fully appreciated the full range of implications for people. I can only walk short, very painful distances with a walking stick – my guilty pleasure of a trawl through the charity shops on a Saturday morning are, for now, a thing of the past. Goodness knows I can barely fit any more books in the house, but I do so enjoy the rummaging, the discovery and acquisition of a deliciously second hand book that I either have yet to read or do not possess and I miss that pleasure. I drive many miles a week for my job – that also has become increasingly painful and impacted on my genuine pleasure in my work. The pleasure is still there and the achievements still rewarding, but knowing that I will almost fall out of the car when I arrive at work and will take up to 15 minutes to bring my leg back from the dead before I can walk painfully into my workplace reduces it somewhat. I have to plan my journeys and the parking and the slow warm up o fthe leg , allow extra time for the irritatingly slow hobble, and gobble painkillers, avoiding the ones that make me drowsy but which also happen to be the only ones that impact on the pain! I will gloss over the need to plan for the loo in advance because of the slow pace and ditto the challenge of bathing. This has been my life for the past few weeks and it is driving me to distraction, even though I know will not be permanent – I am so used to dodging about, popping to places, hurrying along that the frustration is palpable . I can barely imagine what it is like for people to endure this for years on end, or to know that the prospect of this and more is on the horizon because of an existing condition. That reduced capacity for life and pleasure, the pain, the dependency.

I watched the Terry Pratchett programme about planned and assisted suicide a while ago. And I am annoyed that it has become “the Terry Pratchett programme” and not ” the Peter Smedley programme”. Mr Smedley was kind and generous enough to share himself with us, yet it is Terry Pratchett who will be remembered in the media. Whatever views we hold about death, suicide and the legal system, or the BBC, Mr Smedley and his wife chose to share themselves with us at a poignant and painful time and that was courageous. Until relatively recently I held gentle but nevertheless properly thought through views about assisted suicide: it was wrong. There were too many risks of abuse for us to go down the road of de-criminalising it, and besides it felt like playing God. As a sometime Catholic it did not sit comfortably in my mind. I have also supported and cared about people who wanted to kill themselves through depression and lack of self worth, some of whom succeeded. It always, without fail, seemed to me to be a waste, whoever they were and whatever their lifestyle. Every one of them had gifts, talents, individual traits and worth that were ebbing away because of their perceived need to die. I have always respected others views on suicide and assisted suicide, but was in the camp of those quietly opposed to it. Almost disapproving at times, on the inside. What a smug idiot I was.

Within the space of three years I have sat by the bedside of first my Father and then this year my Mother as they did not go gently into that good night, spending weeks succumbing to the effects of massive strokes from which there was no way back. My view up until recently has been – and still is, actually – that death does not have to be like that. Given the right support and care a good death and a good end of life is achievable, especially when it is a medical event like a stroke or terminal disease that allows time for the right plans to be put into place and the right support to be made available. However, the almost total failure of health services to manage pain and death for either of my parents leads me to the inescapable conclusion that this is unlikely to happen. Despite the fact that many, many people must have died on those wards, there was nothing to indicate that death was planned for or acknowledged or that the nurses had any meaningful education around care of the dying , and given that the living and aware were also on the whole treated with an appalling lack of dignity and humanity I am confident that the dying would fare no better. I know that, given a choice, both of my parents would have preferred to slip easily and quickly away and not had to endure the indignities and suffering of their final weeks – but this is not possible to include in the assisted suicide debate which focusses entirely on those who are able to express their wishes on the day, in fact as they take the medication. The paradox is also that the people we saw on the programme were aware and alert, and each of them agreed that they were ending their lives earlier than they might otherwise have done as they did not want to risk the very thing my parents were forced to endure – and they had had to endure it because they had lost the ability to state their wish at a given moment.

So, we are left with the glaring fact: if we could ensure a good death, could be confident that death plans could be in place, that the dying would be supported to their dignified end of life and their death, that pain management would be effective, that health services would have the will and the means to enable good dying, assisted suicide would be less relevant. While there are some places where dying is supported, some wonderful hospices and services who dedicate themselves to the essential and rewarding, if challenging, task of supporting people in their natural death, they are a minority. What I have seen in my personal life in recent years has shown me that it is the norm to find inadequate services in the NHS, to find careless staff and stretched facilities and no preparation on any level for end of life care in the routine daily business of hospital wards. I have to ask myself: is it worth the risk of sliding towards my death, or enduring my end of life as a dependant, knowing what I know? What would I do, knowing what I know, having seen what I have seen?

One thing I am sure of in the middle of all the uncertainty: until I have walked a mile in your shoes I will not presume to know what is best for you, even if I believe, as I do, that taking life is wrong. There have been times in the past few weeks when, if someone had offered to remove my leg thereby relieving the pain I would have very quickly accepted. Desperation and disempowerment create a challenging and dark environment. Perhaps our task should be to shed light in that environment, to empower and uplift, to return control and dignity to those who are missing it. I am very sure of one more thing – I will continue to strive to do this and will continue to drive my services and my organisations to achieve this. Not to do so would be appallingly negligent. I will walk a mile in your shoes.

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I am a local businesswoman with my own company, NED for a CiC No Offence, Governor at a local secondary school. I also have four adult children and a very young granddaughter. Oh, and also a husband. I paint in oils and watercolour, play banjo, guitar, piano, and write short stories under another name which I will never, under any circumstances, divulge, and I have won awards for blogging. Recently mildly disabled, my mobility has reduced a little and that caused me to re-evaluate things very beneficially - I believe it has improved my management and leadership style greatly, giving reflection and maturity without reducing drive and resilience. Cooking, reading and golf also give me great pleasure and I am partial to good wine and whisky and the odd real ale.

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lynda fleming
10th May 2013
Thanks for voting!
im on my own and not in good health so im very worried about dying , im 64 and do not have an illness that will kill me just make what i hope will be a long time ,uncomfortable to live. ive said to friends that i dont want to stay alive if im not in my right mind but will i know in time to do something about it i must admit im scared . my husband died a year ago of a massive stroke i signed a dnr order i knew he would not want to linger but when sitting with him i realised he was in pain i told the staff but they said he did not know anything but i knew different we had been together for 47 years so i did know what i was talking about , we communicated by hand squeezing until he could no longer do that , they had known him a few hours and thought they knew better they did not please listen to partners thay do know what they are talking about . and in the meantime i sit here dreading my own end , who will talk for me
Keith Paterson
4th May 2013
Thanks for voting!
It can be so much better. An old friend of ours had reached the end of the line at 94 and took to his bed. He was fortunate to have the help of Macmillan nurses and a good doctor. He was fitted up with a special bed with electrical adjustments so could b propped up and with a ripple effect, so no bed sores ( the plight of many). Doctor put him on morphine patches and he dozed away most of the time, with no pain, finally drifting off. He did ask me one time "how long is this going on?" A difficult question which I answered the best I could. But as far as a well managed death goes I think it was as good as could be enabled. Well done Macmillan and the local doctor. I hope I get the same level of care
4th May 2013
Thanks for voting!
This is a very sad situation to be in and especially when you have no experience to help you deal with it. I have learnt that you have to care enough to be there to hold a hand to the very end, to talk as though you might be answered and to watch over how comfortable a person is kept,then you have done your best.There is nothing sadder than seeing a life slip away but seeing a life go in turmoil and pain is the saddest. God Bless all of you that deal with this every day.<3
Wendy rowe
3rd May 2013
Thanks for voting!
I watch my father die curled in the fetal position, naked under a sheet. He was like that for four weeks and as I lived 250 miles away and had a young family I only saw him three times in those weeks. The staff at the hospital in Harrow were wonderful and I couldn't say a bad word about them and neither could the rest of my family. Unfortunately I would say that my sisters insisted that his support system was kept going far to long after his life had ebbed away, instead of allowing him a dignified death. Fortunately when my mother died some 10 years later I was alone with her for the last 24 hours and the almost Angels at the West Suffolk Hospital and I gave her the almost perfect death. I was 48 when she died and 2 years later I changed my boring job I hated and went to work in a care home where for 5 years I like to think I made a difference to some ones life. I had the privilege of being with 6 people when they left this mortal coil and making that experience as comfortable as possible when they did. I then moved on to another home and worked for another 5 years until my retirement through ill health at 61. I hope through 10 years I have made a difference and made up a little for all the bad care assistants out there. I didn't get paid much either but I didn't let that make a difference to the way I treated my residence. They were my Mum and Dad to me so it was just like someone was paying me to look after my parents.
Paula Walker
3rd May 2013
Thanks for voting!
As a young nursing assistant in the 60s and 70s I worked with many elderly people in their last days in their own homes and in nursing homes. when they were in their own homes many doctors were happy to up the medication so that they did not endure the painful indignities age and illness forced upon them; those were the very lucky people, Others hung in there for months in pain crying out to be relieved of their unbearable lives. their carers could and would be in tears attempting to care for them. Don't get me wrong these were the minority of elderly patients but to have even one endure in such a way is a moral shame to our society. Many suffering patients hide it from their family though not from their carers and their family is unaware of the depth of their suffering. I watched my brother inlaw suffer with cancer crying out for the medication to be increased to a level which would offer some relief.

Lets be honest if you have a good income and are articulate you will receive reasonable good care and medical relief. if you are not care is a joke for the majority of people. Even though my mother had made as many preparations and had caring and knowledgable family, I found one day working in her room as a care assistant in her very good nursing home was a young woman[30s] with moderate learning difficulies whom I had worked with in the previous 6 months to enable her to have a 'moderate' hygiene level; in other words taught her to wash herself every day and how to use deodarants. a skill she had not acquired by age 30 and yet she was considered competent to care for my mother and other elderly residents. Not surprisingly I felt unable to be confident that her observational skills and knowledge were of a suffiency to identify if her patients had a problem. Yet the pay scale for these nursing and care homes is such that only those incapable of obtaining work in other spheres are employed in these place. You will say they are supervised by qualified staff, but that level of supervision is one that puts the qualified in the office dealing with paperwork and medicines depending on the observation of the workers on the floor to report problems.
I myself shall be saving the pills to take from the first time I wet the bed!!
And I've told my children that I'll come back and haunt them if they ever put me in a 'care' home
Sorry, rant over I just feel very strongly on this subject.
Marianne Piesley
3rd May 2013
Thanks for voting!
My parents thankfully did not suffer long illness before passing away, Dad died in his armchair one night and Mum in her bed, however my brother had Alzheimers for 5 years before he died earlier this year, he didn't really suffer as far as we could tell, still liked to try and chase the young nurses around but fortunately for them too slow before forgetting why he was doing it!. As I approach the age of 80 I frequently wonder what life/death has in store for me, I hope it will be a quick end for the sake of my children, to watch me linger would be agonising for them although I would hopefully not be aware. I suppose I should write a living will but the will to live is so strong.
3rd May 2013
Thanks for voting!
Once upon a time ---- the eldery were cared for at home - surrounded by family and loved ones. Today - they are TREATED - operated on - suffer strokes etc, are resuscitated -- and what for? An undignified death with no control. I feel the question we should also be asking is when life-giving care should stop and care and love given. I have sat with a number of people as they passed over - I consider it a privilege. Birth brings joy and death really should bring peace.
pat mcallister
3rd May 2013
Thanks for voting!
i read this before starting my work for the day in the NHS where i have worked for 25 years. i wept unashamedly as i rread your post.
after looking after my parents whilst working full time , watching my father unable to do anything for himself and unable to speak or eat , i now echo your words, it is no life a hollow existence, when people cry as they wake up for a new day they should be given a free choice ..meds or no meds , assisted feeding or no ??
even inside knowlege and help in the NHS does not help .god help those who know nothing or are on their own.
i have acheived some small changes in our area by sharing my terrible truths of the caring process.
every little helps to make people aware of peoples suffering,
i take my hat off to you for putting this into words with humour .x

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