by Denise Crompton, author of “Diagnosis: Rare Disease”

The care of a loved one with a debilitating condition often falls to their mother, but fathers, siblings or spouses also may take on that role. Even if there is additional help available, the responsibility of assuring good care will usually be taken on with love by one person. Often, especially in the case of those with rare diseases, the need for care will last for many years.

My oldest daughter’s rare disease was such that she needed extensive care at times over the course of many years, but she also had long stretches of being able to be independent. However, the disease was progressive, so for the final 5 years of her life, she required care on a 24/7 basis.

My major focus during that time was her care. Unlike some with rare conditions, she had normal intelligence, so she was keenly aware of all of the abilities she was losing. It was a very difficult process for her and for those of us who loved her, even though she had the very best medical care as well as spiritual care. When she died, we were all relieved that she no longer suffered intense pain, but we also knew that we would miss her terribly.

The days following her death were busy ones, receiving phone calls, making arrangements for her funeral, clearing out the many medical appliances she had been using, and answering all of the lovely messages that were sent to us. And then… the reality had a chance to really hit. I looked at my husband one day, almost in disbelief, and declared, “We lost our daughter and I lost my job of caring for her.”

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