Her name was Easter. She had Alzheimer’s disease. She was my younger sister’s roommate in a health care facility; my sister suffered a variety of complications from diabetes and died four years ago. What impressed me about Easter was her family.

I never visited my sister when an adult child of Easter’s was not with her. They talked with her; her responses were very soft but her children seemed to understand. She always clutched a baby doll in her arms. When her children took her in her wheelchair to give her respite from her mundane existence in a tiny space, she always took the baby doll.

In time, I engaged her sons and daughters in conversation about her. Easter’s entire life had revolved around her family – having babies, eight of them, and raising them to be quiet, confident, hardworking, and loyal children. One of the eight came every day 9 am to 9 pm and brought her comfort, company, massages, a food treat, smiles, and connection. They knew her clutching the baby doll was her connection to the life she had known and loved, and they tended to the baby doll almost as gently as they did to her. Their rituals and their taking turns to be with her continued three years in the care facility. They were caregivers.

There are other caregivers, the invisible helper who cares for a loved one in his or her home. The latest number I’ve read is that in approximately 25,000,000 households, someone is taking care of a chronically ill loved one. Many are Alzheimer’s patients. These loving souls are the heroes of this generation, but the price is enormous. Many of them grind out more than seventy hours a week in feeding, bathing, exercising, calming, and loving someone dear to them. The Alzheimer’s Association of Middle Tennessee has dramatically described the stressful social dimensions of caregiving by contrasting it with normal social exchange:

· Social exchange: the principle dictates that when we have a relationship with someone, each person deserves a fair return on his or her investment in that relationship.

· Caregiving: a situation in which the caregiver accepts a long term or presumed permanent imbalance in social exchange.

In addition to the social isolation for an undetermined duration, the Alzheimer’s caregiver is dealing with the stress of uncertainty, physical exhaustion, financial challenges, and emotional burnout.

Ann B’s story was told in an issue of AARP magazine. She had cared for her husband Bill for 20 years. He had experienced a series of disabling conditions, including dementia. I was struck by her words about her own state, “I lost my sense of myself. I forgot to care for myself.” This caregiver’s words are so similar to the demented patient treated by Dr. Alois Alzheimer in the early l900’s. Mrs. Auguste B. had told Dr. Alzheimer, “I have lost myself.” The impact of the disease goes full circle. According to the article in the AARP magazine, a friend and volunteer worker with older persons stepped in and organized help for Ann B. But few families caring for a chronically ill loved one are so fortunate.

I will share some ideas for caring for the caregiver in future entries to this page. The silent caregiving crisis must be heard and addressed. No caregiver should ever have to feel alone or that “I have lost myself.”

But navigating the journey is difficult because the waters often run deep. I say to you, dear caregiver, keep gaining insights, information and tips – both to help your loved one and to keep yourself healthy.