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Preserving Patient History

Hearing the news that a loved one has been diagnosed with a terminal illness or realizing that they are nearing the end of their life develops a combination of fear and anger followed by an overall feeling of helplessness. Whether from a physical diagnosis such as cancer, a mental illness like Alzheimer’s, or merely the weakening of old age, loved ones will embark on a difficult journey filled by equal parts of love and grief.

The initial response of many families after a physical diagnosis is to go through the motions of mapping out doctors’ appointments, obtaining and administering medications, and making final preparations. The National Comprehensive Cancer Network reports that inclusive, the varied types of cancer diagnoses set longevity between a couple of months to 10 years, depending on the severity of the disease. Whether protracted or compacted, medical objectives such as chemotherapy, diet adjustments, and caretaking are accepted doggedly while grief and fear are shoved aside. Family stumbles through the necessary, tiptoeing around the subject of death and departure in hopes of not disturbing their loved one.

In the case of loved ones who are nearing 100, a bittersweet mixture of thankfulness for memories of a storied past and pangs of sadness for the impending loss combine to complicate the joy of everyday interactions with grandparents or aging parents.

For Alzheimer’s or dementia patients, whose illness, according to the Alzheimer Foundation, may last up to 20 years, the denial runs deeper; it may take years for the family to even pursue or accept a diagnosis. Once a neurologist comes to this conclusion though, denial often continues in family members, the patient, or both. It is often very difficult to communicate openly, voice mutual fears and comfort each other with love.

My father, who is now 69, has suffered from early onset Alzheimer’s for nearly 15 years. He has always been a little shy and was in the habit of keeping his troubles to himself, so naturally he struggled to be open about his diagnosis, as did the rest of our family. For a great part of his long journey, he, my mother, my brother, and myself all handled our emotions and concerns alone. It was only after his retirement, his inability to drive anymore, and my mother’s subsequent retirement to care for him that we became more open about discussing the illness and its impact.

My only regret has been that, after hearing the diagnosis, we lacked verbal openness and struggled to face the facts. That we were unable to support each other, discuss our fears and concerns, share our love, and plan for the future is regrettable.

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