Apart from our own dying experience, we will never be closer to - or understand more- the process of dying than when we are the caregiver of a fellow human being with a terminal illness.
Most often it is our loved one who we will be caring for, making the task even more overwhelming. To bear witness to the ravages of the disease, knowing that you are powerless to stop its progression, is a huge burden.
Caring for someone who is terminally ill will test you, humble you, reward you and painfully remind you of the fragility of life, the strong and mysterious flame that burns within us that can suddenly be blown out like a candle in the wind.
Caregiving to Mesothelioma Family Members Is Difficult
When my husband Brian received his diagnosis of mesothelioma, my worst nightmare became a reality. He contracted pleural mesothelioma, a terminal cancer of the lungs' pleural lining caused by the inhalation of asbestos dust.
We were still reeling from the shock of the diagnosis when, without preamble, the young doctor gave his prognosis. His exact words were, "Three to nine months, I reckon."
That anyone, much less a doctor, could say this so unfeelingly amazed me. His total lack of compassion did not encourage even the small comfort of tears. I felt as if Brian and I had been shot, and from that moment on we were waiting to drop.
Undoubtedly, we were mortally wounded. We suffered shock, disbelief, anger, helplessness and utter despair. In fact, we felt all the symptoms of grief one feels when a loved one actually has died.
What makes this disease particularly hard is that the life expectancy after most diagnoses of any form of mesothelioma is shorter than those of most other cancers. Doctors and cancer treatment centers have yet to treat mesothelioma with the same success that they do breast cancer and many other cancers.
Never Fear the Unknown
What also makes such a diagnosis difficult to deal with as a family — as a wife — is the unknown. Because successful treatments followed by long-term survivals are so rare, it’s hard to know when you make good caregiver decisions. And it can be hard for the patient to know when he makes sound decisions about his own treatment.
With no way of knowing how long Brian would survive, I saw every symptom he experienced as an indication of his impending death. I felt tightness in my chest, often became short of breath and groaned involuntarily.
I wished there was someone I could talk to, but I had nowhere to turn. My children were trying to come to terms with their own grief and it upset them if I made any mention of their father’s deterioration.
At times I felt that I was the only one who believed he was dying.
But as painful as the experience can be, there’s a hopeful message. You will survive. You will emerge a stronger, if changed, person. You will appreciate things you never did before.
I can tell you this because I lived it. And I survived it.