Sixteen months ago I received a call that would change my life in ways I could never have imagined. 5:15 pm on a Monday. I was still at work. I answered the phone with my typical sigh of exhasperation given I was still at work with too much to do and it was past five; and that I am not particularly fond of talking on the phone. It was Dad. His voice was cracked, filled with sadness, frustration and desperation all at the same time. He said: “You were right. I can’t handle your Mom any more. Please come get her and take her with you. At this rate I will be dead before the week is out”. He started crying while struggling to articulate his words to explain more about what was going on while I could hear my Mom screaming stern and demanding words at him in the background, cursing and out of control mad. Mom had been treated for Alzheimer’s for nearly 9 years at the time while she remained at home with Dad and they both pretended nothing had changed in their relationship and life. I flew to their home to ‘rescue’ Dad first thing in the morning two days later. I wasn’t prepared for what I found. More on this on another day.

Fast forward 16 months later and I find myself as my Mom’s guardian and conservator. She’s lived with me all this time. Dad passed 7 months ago. Both came to live with me, supposedly temporarily, 10 days after I arrived at their place following Dad’s ‘911' call to me.

Mom is still physically strong and healthy while her mind and behavior continue to deteriorate. When I am at home with her, she demands my full time attention, doesn’t really know who I am although she often calls me by my name and/or nickname, and she clings to me like a toddler needing safety and comfort during the good moments that she has. The rest of the time she treats me like her indentured servant and constantly reminds me that ‘she has no one’. I don’t count, her daytime caretaker doesn’t count, my husband doesn’t count. I’ve come to the sad realization and involuntary acceptance that my Mom, while here with me, is gone. I am now responsible for an incapacitated adult who terrifies me when aggressive, frustrates me when she can’t listen or understand, and relies on me and her caregivers for her every need yet she is still in control of the situation and our lives. I wish I could say that I miss my Mom. I do but I don’t. Even before she became ill with this very tragic disease, she was not what you would call warm and loving or my confidant. Those attributes in her personality that made my relationship with her measured and conflicted are still very much present and defining in her way of life even though to a great extent she has lost her mind. I have to laugh it off at times because the alternative is screaming or crying and this luxury is rarely an option in the slow passing of the daily and nightly grind of attending to her needs when I am not at work.

And then, there’s the guilt. I always knew that if my parents needed me some day I’d be there for them. However, I had no idea it would be this hard. Caring for my Mom in the dementia stage of her life is turning out to be the greatest test of my life. I love her yet she’s hard to love some times. I want to be there for her but I also want my life back. I get angry at her tantrums and demands though I know she can’t help herself and this makes me feel sorry and sad for her and frustrated with myself. When I ‘lose it’ with her, I immediately wish I could take it back. Just like when I was learning to be a mom to my daughter and son and didn’t really know what I was doing and made mistakes.

I am my Mom’s parent now and the circumstances I find myself in make me sad, happy, angry, overwhelmed and grateful all at once. My Mom is alive. Yet I lose her every day, sometimes many times in just a few hours or a day. I didn’t know being there for her would be this hard or that in doing so I’d be questioning my own beliefs, emotions and losing other relationships in my life. My mom has Alzheimer’s. She’s the sick one, but this illness is attacking everyone in her life.