Who am I? Who are you?
Death affects and changes everything. The circumstances and impact affect not only the obvious areas of life but every area and simple tasks that used to be easily undertaken can seem enormous and just too difficult. Every day activities can be exhausting and any activity can create deep anxiety.
Many of my clients tell me that not only are they grieving the loss of their loved one but a sense of loss of self. The loss of everything they thought they knew, the planned life, the sense of security. Nothing in their lives will be the same again and they are changed forever. Feelings about life and about the future are changed and the alien place that you find yourself in can be scary and isolating.
It can feel impossible to find words to enable yourself to share what you feel with those closest to you and those that have never had this experience may struggle to understand how it is for you.
As time passes communicating may feel difficult and for those who grieve it might seem easier to pretend that they are ok.If others could see grief in a physical way they might understand.
One of my clients said:
“If my home had been bombed and every material object destroyed, if I had left just one chair to sit on ……..folk would pass by and acknowledge me, they would see the devastation, they would see me clinging to that one chair for all I’m worth, trying to make sense of, to find something familiar of my life as it was, struggling to rebuild. This is how I feel but no-one can see or understand it.”
Many of my articles are about communication, our efforts to really grasp how another person is feeling or to express our own feelings in a way that feels right for us.
In the second part of this article I’d like to address the issues for those living with loss before bereavement, for example where there is terminal illness, or where the illness removes the personality of the person i e in illness’s like Alzheimer’s.
Living with terminal illness presents its own issues. For some families there may be opportunities to talk, to address things within the relationship, to plan, perhaps attempt to achieve goals, even to say goodbye. For others the fear of actually putting the words together and openly talking about impending death can feel so difficult that they prohibit any conversations. There may also be a sense that if it is openly talked about it becomes more real.
Much of my work with families’ pre bereavement has been to facilitate difficult conversations. In most cases once the ‘Elephant in The Room ‘is acknowledged it becomes easier and thereafter discussions can be had and thoughts shared, even allowing space to enjoy remaining time in a different way. ( In my new book I explore this more fully )
For the family of the terminally ill observing their loved one deteriorating and then supporting and caring for them until the end brings with it a mass mixed emotions and personal changes.
When my father was dying I spent endless days by his bedside waiting for the inevitable, in fact wishing for an end for him and for us all. When, finally he died, I was filled with guilt for wishing it over and shocked too that he was actually gone. My life was suddenly empty no more hospital visits , running around, never seeming to have enough time, now , suddenly there seemed too much time.
A lady whose husband had Alzheimer’s and then was diagnosed with cancer told me;
“We had a wonderful marriage , it’s only when he was poorly that we drifted apart, we didn’t know at first that it was Alzheimer’s. He was forgetful and sometimes confused. It was only when I got irritated with it all that we decided to get help. We blamed it on age you see, anyway when he was diagnosed we cried, we talked we planned but it seemed unreal. I was quite determined to care for him – in fact I promised I would. We hoped, bargained, prayed, wished that it wouldn’t happen quickly, but I knew I was losing him ,it was fast, by the end of a year he was a different person. Some days he didn’t even recognise me, it was devastating. He was physically there but all that I knew of him had slipped away over the months. I had to give up my job to look after him and there were times I just wished it was over.
Then he was diagnosed with cancer and as it took hold of him I felt it was me that had the illness.
I knew everything but he was unaware, I couldn’t talk to him he was vacant, he wouldn’t understand. I wished it over; I resented long days with this stranger who wore my husband’s body. His illness touched every part of our lives and everything was changed. I had promised him I’d look after him and I did. I lost him long before he died and when he died to be honest at first I was so exhausted it was a relief.
You see I grieved with him in the beginning and then as he grew worse I grieved all that we had both lost. He didn’t know about our first grandchild, he didn’t know about his cancer, It was a time of huge loss before he died. It was a long time before I actually really grieved his death. There had been so many changes.
My whole life had changed it was like I had to find myself –recover who we were and then I was able to grieve the loss of my husband.”
When people are terminally ill for a long time there are many phases of grief that are experienced. Initially there may be shared grief. The shock of diagnosis and fear of what may be going to happen may for a time bring a unity to the family. Alongside this with the recognition of what the death means to each individual comes the grief for personal loss and perhaps life changes that are inevitable. The impact of terminal illness and the many external changes can create a sense of loss of self and these feelings can be quite isolating.
Living with terminal illness changes everything. Through its impact we are forced to let go of all that was all that we thought would be .It changes how we feel and think and it’s ripple extends through every area of our life. This is true for everyone, although each of us is individual and how we grieve is unique to us, it’s important to acknowledge your feelings. By sharing we come to recognise that we are not completely alone.
For more about this or any other articles by Alex James please contact firstname.lastname@example.org
© Alex James (Details are changed to protect the identity of those involved and are written by Alex to enable the reader insight into the experiences of individuals )