Terminal diagnosis changes the very structure of our existence, takes away our control and our ability to hope and plan for the future. When someone we love is given a terminal illness, we become painfully aware of the fragility of life and may even fear for our own mortality.
Living in expectation of death, causes us to experience many of the symptoms and emotions of the grief suffered when a loved one has actually died, including; shock, anger, denial, physical and emotional pain, helplessness and sorrow. Depression is common and changes in eating, sleeping and bowel habits may also occur.
Prognosis increases our turmoil; it is inevitable that we begin counting down the days to the estimated time of demise and see the dawn of each day as bringing us closer to it. Some may feel a sense of surreal ness and an inability to fit back into the pattern of life prior to diagnosis, this often intensified by the reaction of friends and acquaintances, who may be dealing with their own shock and dismay at the news and not knowing what to do or say, avoid us.
It may be some time before we can truly accept that our loved one is dying and during this time we may experience alternate periods of acceptance and denial. Often, necessity brings about acceptance for the Carer as they need to make decisions regarding the best options available for the care of their loved ones. The patient however, may choose not to accept the prognosis and it is important for the carer to recognise and support their need to live in hope of a cure. Hope is paramount to quality of life for their loved one and may even contribute to their longer survival.
Whether our grief is anticipatory or grief due to the death of a loved one, there is a very real need to talk to someone about the roller coaster of emotions we are experiencing. This however is not always easy to do, due to a number of reasons which may include; trying to remain strong for the patient, trying to remain strong for the children, trying to put on a brave face for other family members and friends.
Counselling, though readily available, is resisted by many, who believe that no one could possibly understand what they are feeling, nor do anything about the outcome. Speaking from my own experience of anticipatory grief due my husband’s terminal illness, I initially had these feelings and it was with some trepidation that I went to my first counselling session. Upon hearing my story, the counselling cried, further strengthening my opinion that she could not possibly help me. I was mistaken; after a few visits I began to see the benefit of these sessions and looked forward to seeing her each week. Here, for a short time at least, I could stop acting as if everything was okay – when nothing was okay, here I could take off my brave face and let my defences down.
The only trouble with counselling is that it may not always be available when you need it. I highly recommend keeping a personal diary for these occasions. During the two years of my husbands terminal illness, my diary was without a doubt, my strongest coping tool, I wrote in it daily, often in the form of poetry, pouring my anger, my fear and my heartache on to the pages. Periodically, I would read back through it and through this I came to know myself very well - later I could see my strength coming through.
Excerpts and poems from my diary now form a major part of my book “Lean on Me” Cancer through a Carer’s Eyes.
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