The Olympians among us

As we watch the Olympics and see record after record broken and new winners crowned, and as we hear of the dedication and hard work of the athletes, I have been thinking of another kind of perseverance and dedication, that of a family caregiver for a person with a chronic disease such as Alzheimer’s disease and dementia.

In my experience such caregivers are truly the heroes of our society. They are running not just a sprint but a marathon. Judy comes to mind: a 58-year-old woman who was caring for her mother with Alzheimer’s disease in her small home on a back road in Brownville Junction. Her mother no longer recognized her or her home, and was determined to leave to “go home” at any opportunity. She walked out on this back country road without sidewalks or streetlights unprepared for the weather and oblivious to the hour of day or traffic risks. She was going home no matter what, but had no idea where she was.

When Judy tried to redirect her or prevent her from going she became angry and eventually violent.

Judy was beside herself and asked me for help. When I met her at her home Judy looked exhausted and frightened. She knew she was in trouble but had no idea where to turn. She felt responsible, had no other support system, and was at the end of her rope. She had lost her mother’s company and love years ago. Now she, herself, was sadly the enemy.

My awakening came when one evening her mother was especially violent and inconsolable and Judy had to call the police and have her mother taken to the ER. In the hospital she was told, “You must take her home. There is nothing wrong with her. She just has Alzheimer’s disease. There is nothing we can do for her.”

I won’t say in print what I said to myself about this, but it was not polite! I felt let down by my profession and knew that there needed to be efforts in our community to support such caregivers as well as improved education for our medical community. Not only is Alzheimer’s disease a well recognized illness, but it affects many lives in addition to the patient. And there are ways to help.

Caregivers have become my focus of attention and it is not an exaggeration to call them “heroes.” Not only have they given years to worry about how the next step in the decline will affect mom as they watch her become incapable of living independently, but they are often deprived of the loving relationship of the affected loved one early in the disease. Then, there is the sense of powerlessness, and the “imprisonment” and isolation due to the 24-hour-a-day needs of the patient. They must give up good jobs, lose income, ask for favors from neighbors just to go to the store, and eventually change diapers, grind food, and feed their loved one while watching a slow, relentless loss of function. In effect, they must give up years of their lives to another person with the reward being that they have “done their duty.”

Maine Highlands Senior Center and the Thriving in Place Collaborative are working hard to help create a community that supports all people as they age. The Savvy Caregiver Program is a free, five-session training series for family caregivers. It is led by a trained facilitator and sponsored by the Alzheimer’s Association and Eastern Area Agency on Aging(EAAA). There is a course in Dover-Foxcroft that started on August 12th and there are plans for additional regional trainings in Dexter and Milo soon.

The Savvy Caregiver Program helps caregivers better understand the changes their loved ones are experiencing, and how to best provide individualized care for their loved ones throughout the progression of Alzheimer’s or dementia.

Maine Highlands Senior Center is also holding “listening sessions” with caregivers to understand their needs and to talk about an Adult Day Program which is being planned for Central Hall.

We would like to hear from you if you are in need of help or information about this challenging problem. Together we can make this path better for patients and families. For information call: EAAA 941-2865.

Readers are invited to offer feedback about this column and to suggest topics for future articles. You may do so by contacting Lesley Fernow at (207) 992-6822 and  lmfernow@rcn.com.