‘Caring until the last moment of your life’ by Louise Rogers

You matter because you are you, and you matter to the last moment of your life.” Dame Cicely Saunders

I remember sitting with my mother’s cousin in hospital, towards the end of her life. When the rest of the family was out of the room I enquired how she was feeling, how she was feeling about dying. She said that she was scared – she would lay awake at night thinking about it. A hospital bed is a lonely place to be at night. We started to have an intimate conversation and then the family returned. The talk returned to the everyday, laughing and joking trying to lift spirits and steadfastly ignoring the elephant in the room – our beloved family member was dying. No amount of cheering up would make a difference to this.

I was sad that no-one seemed to be willing or able to listen to the fear and anxiety, to engage in one of life’s big questions – what do I make of my own dying? It seems that my family are not alone in this according to the research commissioned by the Dying Matters Coalition in 2011.

Someone who is passionate about improving the way that we die is Dr Peter Saul who is a senior intensive care specialist at the John Hunter Hospital, Newcastle, Australia and an advisor to the state and federal governments. In his illuminating TED talk about dying he says that the way we die is changing. Sudden death is becoming unusual and a slow decline because of a terminal illness is becoming less common. Therefore, the majority of us will either die through organ failure (for example our heart or lungs) or 60% of us will have a gradual decline. There is therefore plenty of opportunity to talk about our death and the deaths of our loved ones: plenty of time to make a plan.

There is a lot of information about dying a good death and seemingly lots of organisations, such as the hospice movement, which have shown how this can be achieved. But in some ways it appears to be quite separate from the world of caring, the world of trying to add quality to life and perhaps years to life. In many ways as Peter Saul suggests we have medicalised death. But is not failure when someone dies, it is the natural way of things. It is only failure if we haven’t done what we can to ensure that life has been good, right up until the moment of death. Preparing for a good death should not be an add-on but part of any good care, in particular care for older people or those with serious illness.

Workers, volunteers, family members and friends need to know how to approach this. Peter Saul, at the end of his TED video, suggests that we can start with two questions

  1. In the event that you became too sick to speak for yourself, who would you like to speak for you?
  2. Have you spoken to that person about the things that are important to you so that we have a better idea of what it is we can do?

Perhaps those of us who spend time with older people can do a bit more. We can find out what resources are available to help end of life planning, for example Final Fling. If people do not have access to the Internet we can help them with this. And maybe we can become familiar with what needs doing by starting to make our own plan. As Final Fling founder, Barbara Chalmers says, ‘Sort out your affairs …and then get on with living your life.’

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About Louise Rogers

Louise is an independent consultant working with third sector organisations and she lives in North Staffordshire. After a her first degree in economics her career has meandered through operational research; fundraising for a charity; residential social work; social work; social care management; social care planning; equality and inclusion matters; and neighbourhood regeneration until she finally took the plunge in 2003 into self-employment.

Louise has been volunteering since she was 12 years old. For the last 25 years her volunteering has focused on governance, being on boards of local organisations including the local rape crisis centre, Savana, and the Barracks Trust, which owns the local, historic barracks and disburses small grants to community groups. She has been active in the local voluntary sector forum. She is also involved in her local community and U3A (University of the Third Age).

Louise is a Unitarian and interested in spirituality and caring, in particular informal caring. Having been the sole parent of her daughter, who is now 20, she is concerned that the labour market takes little account of parenting skills and experience. She is becoming increasingly interested in family caring at a distance, as her mother, who lives 150 miles away, ages.

4 thoughts on “‘Caring until the last moment of your life’ by Louise Rogers

  1. Thanks so much for this contribution Louise – it’s such an important issue, and yet one that we often don’t have the courage to tackle head on with our loved ones.
    An even greater level of complexity is added when people have issues with decision making and mental capacity. Perhaps there are aspects of this issue that you might like to feed in to the ReValuing Care network response to the House of Lords Select Committee Review on the Mental Capacity Act 2005? I’ve just done a new post about coordinating a response at: http://revaluingcare.net/house-of-lords-select-committee-on-the-mental-capacity-act-2005/

  2. Thanks Sue – it’s good that you were able to have that conversation with your father.

    Thanks Rosie. There are clearly issues about mental capacity. I will look at the link.

    One of my concerns at the moment because of my mother, is about depression and how this can influence those with fairly OK mental capacity. One of the associated symptoms of depression is an inability to make decisions. My observation of my Mum’s GP (fairly young and you would imagine taking a more holistic approach to health) was a focus on physical issues. Perhaps this is the subject for another post!

  3. The thing about depression among older people is it often goes undiagnosed, and even if diagnosed, often a full range of treatments, especially talking therapies, are not always made available. There’s a strong element of ageism, and an idea that part of being old (and often more frequently being bereaved) means that ‘of course’ you’ll be depressed. Whereas, in reality, there’s no ‘of course’ about it. Yes, Louise, another blog is definitely called for!

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