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Preserving Patient History

By Nora Triepke

 

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.

Early on, I had the idea of asking him to preserve his oral history by recording life experiences and advice on video or in audio recordings. If he had felt comfortable, I would also have loved to have him record diaries or write letters to us in the future. However, I lacked the verbal intimacy and courage to do so. I failed to realize that it was not merely a selfish request for me, but doubled as both a project to bring my family together, enabling communication, and as a way for my father to know he would have a continuing presence in my life after his passing.

If we had all had a little more courage, fueled by our love, preserving his oral history would have been a bonding activity for our family, brought peace of mind to my father, left a legacy for future generations and – on a whole – served as therapy for us all.

To have a letter from my father on my wedding day or to be able to show a video to my daughter of her grandfather offering up advice to her on various aspects of life would have meant the world. Not only that, but it would have been a great relief to myself and my father to know that he did not have to simply fade away, feeling powerless to prevent the memories from slipping beyond his grasp.

Have the courage and love to approach any loved one nearing death; let them know that you want their legacy to remain long after they are gone. Take the focus away from the diagnosis and place it on family, love and life; allow them to leave a rich inheritance behind for those who treasured them the most.

 

Nora Triepke, 28, is a high school English teacher in Odessa, Texas. She and her mother, Sandy, lovingly care for her father Darryl Triepke who was diagnosed with early onset Alzheimer’s in 2006.

 

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