This story comes from Betsy whose 79-year-old husband was diagnosed with early dementia some five years ago:

“Yes, probably the hardest part is not knowing who he will be today, or what I have to do to shore up my patience to support him kindly. What will he be able to do for himself? What will his mood be like? What do I need to do to keep him safe and occupied, or what do I have to do for myself to not be grouchy, or just plain sad over and over again?

“John (pseudonym) is really a mellow fellow these days, but he has his frustrations at small tasks: not hearing me well (he is quite deaf which adds to his remoteness), forgetting I am here and being VERY startled when I speak to him nearby, and then he can curse up a storm and take some time to calm down.

“I know I am fortunate he is still as independent as he seems, but anticipation of the future seems to weigh on me heavily. Knowing the progressive course of Alzheimer’s Disease directs me to encourage as much physical and social activity as possible for him, and I do find this effort tiring after dozens of years living with an extraordinarily bright teacher and tinkerer, who always had ideas to explore and activities to pursue and share.

“Some days he keeps himself going with few reminders like ‘Where are your hearing aides?’  ‘Have you taken your pills (which I have poured for him)?’ ‘We need to leave in half an hour for the gym.’ But on other days he thinks and moves so slowly and seems very confused and distant. Then it takes all my patience to proceed without screaming.

“Reading and my friends in a couple of support groups help me a lot. They let me know that I am not alone, that my grief at losing a beloved and stimulating companion is honest and acceptable and that talking like this serves to relieve my anguish. Sometimes our shared caregiving struggles make us laugh so hard that I come away feeling pounds lighter … and my heavy heart can stand that.”

Betsy is far from alone in her walk through the “long goodbye” that is Alzheimer’s disease. Indeed, caregiving and loss look very different from the outside than from within. She and her fellow families need HOPE that the treatment and cure for this scourge is found soon. She urges caregivers to contact Sally Williamson at 252-974-1837 for support group and respite information.

Peggy Cohn, BSN MPH PhD, is a retired geriatric care manager with a background in public health nursing and  degrees in family studies and aging. These stories are drawn from local caregivers of folks with Alzheimer’s disease. All caregivers and their families are anonymous for their privacy and dignity.