Maintaining Some Semblance of Control
This is my final SharePost discussing the movie "Away From Her" in relation to the dementia caregiving experiences of my friend Anna and myself. We kept asking ourselves, why would Fiona, while showing some signs of early onset Alzheimer's disease, decide to leave her loving husband and comfortable home to enter an assisted living community when she was still functioning?
At first we were stymied, but then I thought about my mother's last three years and realized a possible reason for this decision - Fiona wanted to keep some semblance of control in her life. By making the call, against her husband's wishes, about when she moved to the retirement community, she was able to make her own decision about this important transition in her life. Similarly, her assistance of another resident, Aubrey, seemed to reinforce this concept, since by helping someone who was experiencing more challenges than she was at the time, Fiona could again keep some level of control and also feel needed.
As I've watched my mother slide from mild cognitive impairment (MCI) into the middle and later stages of Alzheimer's disease, I see someone who still struggles to maintain control. Three years ago when she was finally diagnosed with MCI, Mom insisted on handling all her prescriptions, even though her memory was showing gaps. That control proved problematic when she was mis-medicating herself.
Since April, I've had a nurse's aide share that Mom often refuses help with eating; she stubbornly insists on feeding herself, even though her shaky motor skills make it difficult for her to keep the pureed food on the spoon. And just yesterday, the nurse who was on duty in Mom's nursing home hall described how Mom wanted to control whether (and when) she wore her oxygen and whether she took her breathing treatments. I've also seen Mom mirror Fiona's effort to care for another resident who was showing emotional distress, but whose conversation was unintelligible during the past two years as well.
In fact, I haven't heard of too many instances (if any) when a person with dementia wants to give up control of life's key aspects. That's why I think Fiona's decisions about moving to the assisted living facility and taking care of another resident strike such a nerve for me and Anna. Thus, we ask an important question of ourselves and also of you, the readers of this Sharepost: How can caregivers provide opportunities for loved ones who have Alzheimer's disease to have as much "control" over their own life choices and issues, while still providing an appropriate level of support related to the issues that this disease presents? Maybe the level of control is based on a sliding scale, but it's an important conversation to have in an honest manner with your loved one, especially in the early stages of this disease.