Living and Dying

On  Living and Dying

and leaving something behind 


When someone is told that their life is limited, that they are terminally ill and are going to die ,the reaction will be as individual and unique as the person receiving the news.

There will also be some  common reactions, feelings and fears.Shock, disbelief , anger , fear , grief for all that was thought to be and a future that was thought to be and now stolen away.For those closest a roller coaster of emotions is about to begin and all are placed into uncertainty.

Where the dying are not aware of their condition perhaps they are suffering from other complications such as Alzheimer’s, the burden of acceptance will be carried by the closest loved ones, who ,will endure the cruel observation of watching their loved one slip away but still being physically present.

I remember an elderly couple where the wife had been diagnosed with Alzheimer’s. In conversations with the husband we’d reflect on what he was already experiencing as loss. ‘This isn’t my wife ,I wish she had died because  this is living hell, her body is still here but my wife is gone”

It is incredibly hard to express your grief when the person is still physically there. This is the same for those where a family member /close loved one is dying of terminal illness reaching a point where you know the ending is coming but living with the daily uncertainty of when.

I spent endless days with   my father  as he journeyed towards his end and there were days where I thought it was imminent and then he would pick up and recover for a while, leaving me in a huge isolated place of uncertainty.

There are so many thoughts and feelings flying around at this time ,the guilt for wishing it over , the painful observation that the person before us is  no longer the bright caring mother,father ,sister ,brother, uncle,aunt or  grandparent. This kind of trauma is very distressing for all members of family and friends. To wish it to end and then eventually to reach that time and see them gone can leave a mountain of guilt to scale .

In my personal experience , as  my father was dying I remember the endless hours by his bedside watching him struggling to breathe mostly unaware of my presence. Each breath I’d think please stop now ,because I knew he was going and I wanted to put an end to the unbearable uncertainty of facing the inevitable.Then after he had died a relief that for all of us it was over. This was short-lived,  followed by guilt for wishing it so and the disbelief that he was finally gone and realisation that it would be forever. There were suddenly so many things I wished I’d said , I had a strange feeling that I’d not made the best of his last days or months for that matter.He’d changed , I was frustrated by his confusion , even things that now as I reflect make me smile at the time were hugely irritating , like him dipping his hearing aids in his tea or hiding his uneaten  meals in his bed. Humour deserted me then ,  I was tired and all cried out. I wanted the end, I spent endless journey’s to and from the hospital planning how it would be.Then it happened and I was shocked as though I hadn’t expected it at all. I remember crying out “noooooo”in huge surprise when the hospital called to tell me he had suddenly ,simply gone. All the hours of sitting waiting for that final breath, came when I wasn’t there. I felt cheated actually and angry with him if I’m honest , then faced with it’s harsh reality I felt suddenly so alone and lost. He was gone.

Surely I must have known all of this from my many years of experience and of supporting others , no, I hadn’t planned or anticipated this massive emptiness.

Fortunately my father was an amazing artist and nowadays I can connect to him by spending time looking at his colourful work and considering what might have been in his mind. I reflect on the days he was vibrant and alive and well enough in mind to paint and of how, at that time ,I gave his art little aclaim noticing  more the mess he made around him whilst creating these precious works.

Grieving the living is a very complex thing.It is grieving the loss you have yet to face but already are experiencing. The experience of my fathers death  taught me the importance of talking to our loved ones in good times, times when we are not facing adversity.The importance of discussing endings and wishes connected to them.The importance of sharing fears ,hopes and grief with the terminally ill. The importance of expressing our emotion , even of crying together and sharing the loss to come.The importance of capturing their thoughts and feelings, before they begin to slip into the abyss forever.

In my work I encourage the terminally ill to leave a legacy, an imprint of themselves, to keep journals and to talk with their closest loved ones, and importantly, discuss how ideally they want their ending to be and arrangements thereafter. If I had done this with my father I do believe the end of our journey together would have been a little  easier.I’d have been able to recall our conversations and would have, I’m certain, gained strength from them.

It’s not easy to talk at such a deep meaningful level with those we love. These intimate conversations with my own family are usually met with” oh here we go death talk again” and some moans and groans about it being depressing . I have persisted  however and at the very least my family are aware of what I’d like them to do with my remains – pretty much their choice , although I have mentioned I’d quite like to be a paper weight, wind chime or diamond .

We are all gong to die at some time and the legacy we leave those we love can be so much more valuable than our belongings if we leave a little of our selves.

I mentioned Journalling, blogging or diary keeping,  sorting out all those old photo’s and media memorabilia . Leaving the passwords to social media pages so that others we trust can take care of them for us.

Alongside leaving a will, ensuring that for those left behind there’s still something tangible of our selves that they can connect to.

Living with loss brings so many unexpected feelings, thoughts, re actions.If you would like to share your experience please contact us


© Alex James

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