Dying Matters Awareness Week– Importance of talking about advanced care planning

Putting things off for another day is a common reaction to address something which we do not want to face. We think about it when we are trying to sleep and remind ourselves – “in the morning I must do this”. The mornings come and we get distracted by other things which seem important and the job is still left on the “to do list”. This can go on for days, months and even years. Then suddenly something significant occurs in our lives and the task you put off for another day becomes important.

Planning for my care when I am ill has been on my “to do” list for quite some time. You would think in my job I would be reminded of it every day and hasten my efforts to complete writing down my wishes. Like the nurse who smokes and thinks she won’t have lung cancer. As I am a nurse, I thought I would have all the time in the world to complete my Advanced Care Plan as I would have the mental capacity to express what I want when I am ill.

Any illness/disease has cruel effects, and these can come on suddenly. So sudden that we do not have time to think how we want to be looked after. Trying to cope with the diagnosis, going for appointments and hoping for a cure occupies our minds.

I have spoken to my family about my wishes about resuscitation and where I want to be looked after when I am dying but never wrote it down. Like many relationships I have been the one to talk about this whilst my husband listened (I don’t even know if he remembers what I have said – as husbands tend to become deaf at the most convenient times!).

One day during this crisis my husband started talking about his wishes. I was surprised that he did not want what I wanted. In fact, his wishes were opposite to mine. I had assumed he shared the same wishes as me – as he usually goes with the flow.

Planning our care is such a personal thing and should not be taken for granted. What you think people would want might not be what they want. Before this conversation I would have chosen his care based on what I want and not what he would have liked. I have known my husband for 40 years and thought I knew everything about him but alas we truly do not know everything as illness and death is not the usual topic of conversation in a relationship.

So, the task we both have now is to write down our wishes so our children would not have to be burdened with making decisions on our behalf. We would not want our children to think to themselves after we are gone “is that mum or dad would have wanted”. We still have a voice even when we cannot speak and be heard.