Facing terminal illness

deaths-door-facing-terminal-illness-loved-one-dvd-cover-artWith the diagnosis of a terminal illness, mortality gets to sit at your table, right next to the knife and fork, up close and personal, whispering messages that you might die much sooner than you thought. You do not get to continue to view death from the large platform called life, but from the edge of the stage, just behind the curtain, as if waiting for your cue to die. A diagnosis of a terminal illness makes you feel temporary, transient, somehow perishable. Mortal. It is why you start to live life more vividly, more fully and with all your metaphysical engines firing. It makes you want to live, and to love, a whole lot harder. Loving is the best way to make death seem more palatable, less terminal, the best alibi to death there is. Without a diagnosis of a terminal illness, you get to live more freely, and to live with an expectancy of reaching old age. In fact, you almost never consider the real possibility of the alternative, of your own mortality, your own death, even when someone close to you gets terminally ill or dies.

Even though for many following this type of diagnosis, they [we] will still live to old age, it forces us to consciously consider the other option. It is a shadow on your heart, and on the heart of those who love you, a cloud that does not go away no matter how hard you try to rationalise its presence. It is a burden, and a weight on your shoulders, and everyone I have ever discussed this with who has been diagnosed with cancer, and survived, says this cloud stays with them in the form of fear of the cancer returning to take away their life. The issue of mortality does not completely go away, they say. With dementia, [for me] the thought of dying does not have the same prominence as does the thought of being in the final stages of dementia, prior to death. In fact, there are days when the thought of death, rather than the final stages of dementia is far preferable. But the cloud is the same, dragging on one’s soul and heart, forcing the same thoughts of perishability and mortality.

Facing up to the fact that dementia is a terminal illness is made more difficult because of the focus being more on the thought of your own quality of life being compromised, of not living fully functionally, until you die, and the thought of not being in a position to make your own choices. The notion of not knowing your loved ones, or not remembering yourself in a mirror makes it very daunting, and colours the reality of the illness being terminal, making it hard to make end of life decisions in a timely fashion. In some ways, I’m not sure it prepares you for death in the same way as other terminal illnesses,  as it is easy to think it won’t happen to you, that somehow, you’ll be different to all the others who have had dementia before you. I guess though, it could be the same in that way too.

Aside from terminal illness, events such as 9/11 or war or natural disasters like floods and tsunamis or land slides can bring you close to facing death, but only if you are ‘in’ the experience, rather than just watching them from afar via the radio or television, as if they are merely a distant visitor to your life and not close up on your stage. The positive impact of events like these, and terminal illnesses including dementia, is that once the shock and anger subsides, your view of the world and yourself changes, and lights come on inside your tunnel that didn’t show themselves before. There is a type of freedom missing previously, and a clarity of thought and insight. And a deeper love and laughter, that although sometimes is tinged with sadness, sets you free.

7 thoughts on “Facing terminal illness

  1. Pingback: Ramblings from the past, as I think about 2017… | Creating life with words: Inspiration, love and truth

  2. Pingback: Dementia, blogging, reading and a terminal illness « Creating life with words – Inspiration, love and truth

  3. Kate my new friend. Read this one with a BOND that we now share. MY strong sometimes harshness to others that speak about this diseas “light heartedly” and havent grasped the depths of dispair about this disease. is due to my living with my fathers “Alz’s traumatic journey into his final ‘relaease” “eternity”also for me and my sister as we with younger children working also and caring for our father amidst our stressful worlds. As he lived before institutions on his own.
    My diagnosis was “staged within me” from that experience. I have just written my story for professor Ralph Martin for his document? As I quoted in it I now have to carry the cross that my father carried perhaps in his footsteps?
    However with the knowlege and drug trials I can be involved in NOW as I am still functioning before the dementia symptons overwhelm that blessing of mental capacity, I can be a usfull subject for future advancment to find “something” through mediacl research to “stop” this disease for perhaps my family and others behind me. Through our personal research and more insightful awarness about our disease we hopefully CAN have a kinder journey into our final destination.. As we say, Oscar and I.. “doing something” empowers us, doing “nothing” NOTHING changes. I am about to experience a PITTS Pitsburg PET different than the normal PET this scan is a scan that see’s the brain likened to a postmortem absolutley elimintates ALZ’s in re- of other dementia’s. In June I have it. One in WA at the McCusker oundation (Ralph Martin) and one in Melbourne.. More diagnosed people of ALZ”S should have it to understand absolutley their tru diagnosis. As it helps us to identify our symptoms of disabilites cuased by them. and empower us to work with them and arround them As Oscar and I have learned to do to have a kinder lifestyle in them. knoweldge always our power weapon Which mediacal folk have never given us… We have done our own and this has helped us to understand and cope easier. so girl love this blogg and best of our love for your time in NZ xxxx


  4. hear hear, as usual wonderful lady another great piece of insight from you, i wholeheartily agree, much food for thought to ponder.??? is that right,, anyway i enjoyed reading your perspective. xxxxxxxxxxxxxxxxxxxxx


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