I have a large interest in people who are going through rough waters who have terminal illnesses. I believe I have some empathy for others and along with that, the fact that my brother suffered from a terrible and rare disease, I am where I am today.
At first, when the patient and family learn of a disease that is incurable at this point, there is not only shock but much talk amongst each other. Very few have heard of some diseases and along with chatter comes fear and questions.
How long will the patient last? Exactly what is this disease and how did he/she get it? Do we need to think about death? Do we need to plan funerals and arrangements? The questions begin to roll and before we realize it, the patient is no longer looked at as our loving family or friend; they are the beginning of feelings of pity and sadness.The conversation of the illness is brought up in many a topics but it is talked about in almost a whisper tone.
As the months march on and new symptoms arrive, people fear death more and more. Some people don’t know how to react to this new side of life and so instead begin backing away, hoping the disease will some how disappear. Some others, will chip right in, offering help and running errands as the patient becomes more comfortable in bed.
Usually the patient is the one who is struggling to make the diagnosis real. They feel fine. Oh, of course they have suffered some symptoms, but they are still pretty good at living life.
It is sometimes easier for the patient to struggle through the symptoms or stages than it is for family and friends to watch the changes. It is sad, I agree, but it happens more often than not.
My suggestions for those who are having to deal with things like this in life is to think about what the patient likes; and what were their interests before the illness came along. Whatever your answers may be, make that a highlight. Visit your loved ones and take a magazine that holds interest for the patient, read to them about their favorite topic, take selfies of you and them, talk about things from the past that will bring smiles and laughter. If at all possible, bring a lunch to them to give the caregiver a break, or if you can, offer to pick the patient up and get a pizza and share lunch at the lake or park.
This is a sad time, I agree, but the goal is not to show the sadness at this time. There will be time for that later. Your goal is to make memories, memories for you for the tomorrows. I can’t stress this enough either; while you are visiting the patient, please don’t stand together with others in the room nor outside the bedroom door and talk about the patient like they can’t hear or comprehend, they can. Did you know that our hearing is the last thing to leave after we die? It is. So although these are rough times right now, live for the now and love life and your family, you will never regret it during these months.
Who I am 