"Sundowning"

As dementia worsens, a pattern of increasing confusion and agitation occurring late in the afternoon and into the evening hours develops. At first insidious and unpredictable, this so called sundowning phenomenon becomes the norm for many elderly persons as the affliction of aging brain takes over.

This last week has been rough for Mom. Around 5 PM, she starts in with a restless and inconsolable anxiety that usually persists until she falls asleep after 8 PM when the overnight caregiver arrives. These few hours are long for Dad; he is alone with her, tries to comfort and assuage but loses patience sometimes. This heart breaking pattern symbolizes all that she has lost and is a harbinger of more difficult times to come. I ache inside for the person she was and wish there were something we could do that would make a difference.

My instinct is to jump into the car when she calls me in a panic. It was easier when the trip was 4 miles one way; harder when it is now 13 miles one way. The other night I raced up to see her, to fulfill her request that I literally "hold her hand". I walked into the room to find her fast asleep. The 35 minute drive through traffic is long and lots can happen in that period of time with caregivers coming and going, medications kicking in, and Dad trying to smooth things over. Sleep eventually comes and the other night was an example of sheer exhaustion winning out over the terrors of her mind.

I know Mom needs to be in a setting where personalized care, comfort, and reassurance are ever present and staff have the special skills to navigate through these rough hours without being pulled in all directions. The next step of this journey is to explore new options, a grueling process of upheaval for all involved but especially for Mom and Dad. My biggest regret in this arena is that I did not know "back then" what I know now. My fear is that I still don't know it all and that whatever move we make on their behalf still won't be quite right. Why can't we get these most loved and cherished elders the tender loving care they so desperately need and deserve after so many years of faithful service to their family?