The importance of autonomy in the early stages of dementia

When my mom went from mild cognitive impairment to early dementia, it felt like she and I had gone through a divorce. Wow, she was a force to be reckoned with even though I could tell she was scared. She looked at me as if I were a stranger sometimes; at other times she looked at me as if I were the enemy with fire in her eyes and a clenched jaw.  My mom was clearly ready to fight and she’d do it alone, thank you!  I missed the window of opportunity to see if I could be her partner in this fight, and if not her partner, then at least her trusted sidekick.  I wish I knew then, what I have learned since.  I wish I would have known how to help her help herself on her terms.  All I felt was I was failing her as a daughter and as someone who loved her and admired her.

Do you know what baffled me was how one day I felt that she and I were on this journey together and the suddenly, she was doing the whole thing on her own.  I felt like such a poor excuse for a daughter.

Looking back, I wish I knew the importance of working with her early on to get the right tools to her so she not only felt a sense of autonomy and purpose but so she had a chance as making a difference.  She needed tools to track her cognitive abilities and so she could take on the battle with that great determination that was part of my mom’s character.  SHE needed these tools more than anyone else but she also needed our support and encouragement.  SHE needed to know how she was doing and have options on battling the disease through her choices of activities and engagement with others but she also needed our loving support to process.  She needed and deserved the dignity of being the main player in the fight.

Today my son Steve and I and our wonderful staff are driven to figure out how provide the right tools at the right time to individuals living with dementia and provide a parallel set of tools for those who are caring for them.  My mom passed away November 30, 2018 and I feel her presence every day as we do our work.