Mary, a retired professional, mother of three adult children and married for 49 years, had begun showing subtle changes in daily life.  Decisions choosing from the menu, simple bookkeeping mistakes, distractions in conversations. When her children visited, the changes seemed more dramatic than to their father, Bill. Although Bill and the children were suspicious that something was wrong, the visit to the doctor held apprehension.  Bill and Mary sat, hand in hand, in anticipation of the delivery of news from the physician. The somber looks on the faces of the doctor, nurse, and social worker spoke of ominous news that apprehension did not prepare them for. Dementia is not a word one can be prepared for. 

In the ride home, they silently were filled with fear, numbness, dread, uncertainty.  Then, Bill was filled with compassion for his wife. Taking her hand, he vowed to care for her exactly as she expressed, promising to be with her through all the changes as he had vowed 49 years earlier. The changes that are being faced with a deteriorative disease are not only the end of something but are also the beginning of something else.  The LOVE at the beginning of a relationship brings the same hope of endurance through the painful times in a relationship. 

As a caregiver, emotions become the friend who calls too often, the house guest that stays too long, and the unwanted virus.  Be encouraged: Don’t be uncomfortable with your emotions. Talk about your emotions: fear, distress, being uncomfortable, weary, frustration, anger, tears.

Tears are the language that is spoken by both the patient and the caregiver.  Tears are not unique, although they are unique to the person. Grief is spoken through shed tears.  Grief begins early and never ends. Grief cannot be separated from LOVE because it is created by LOVE.

Mr. Rogers teaches, “Love isn’t a state of perfect caring.  It is an active noun like ‘struggle.’ To LOVE someone is to strive to accept that person exactly the way he or she is, right here and now-and to go on caring even through times that may bring us pain.“(June 13, 2018). When you and I can connect LOVE to GRIEF and STRUGGLE, we are able to survive the changes of a disease that is changing daily with difficulties that cannot be predicted or understood by our physicians, family or friends.  Our hope is in LOVE.