My mother has always been two people: Lucille Ball, in all her ridiculous, slapstick comedy, and a fearful woman, simmering with anger, having been trounced upon mightily early in her life.
Her first husband took her three young children from her and disappeared, along with my mother’s best friend. My father, next in line, is also a terrible human being with whom I’ve had no contact in 20 years. The next man she dated murdered a clerk, unbeknownst to my mother, while she waited in the car at a gas station. At last she met my step-father, Bob Smith, whose decency, intelligence, and kindness were a snuggly campfire in the arctic winter of her life. He saved us both but sadly, left our world years ago.
Now, at 83, my mother is newly diagnosed with Alzheimer’s, as well as a lesion in her brain. Although we’ve only now found out, she is at mid-stage (4.5) through the disease, the cycle of which lasts between 8-10 years. My brother Jarrett and I are her primary caregivers, along with my Uncle Bob and his wife Tina, two other saints in the making.
My mother now is more angry and bitter than she’s ever been but now it’s personal for my brother and I. As is typical in this horrible disease, she blames everything on us – but more often Jarrett, as he has been the primary caregiver for some time before I arrived. Upon us she blames everything from removing her car keys (neither of us were involved) to toilet paper “disappearing” from her bathroom, which no one else uses. She tells our family members, her hairdresser, church members, and anyone who will listen about us about how we are doing her wrong, no matter how much right we try to do. She is simply incapable of understanding what is going on.
This is especially painful because the reason she is blaming us is, itself, a manifestation of the disease. She has absolutely no idea what is happening to her mind and blames its symptoms on us. She repeats the same story within moments of its first telling. She loses almost everything. She has no sense of time. She has no idea that there’s anything wrong and certainly doesn’t understand why she cannot even be left alone anymore. Paranoia is part of this malady, and she is beginning to believe we are the monsters under the bed. On the contrary, Alzheimer’s is robbing the life out of the entire family.
In the many weeks I’ve been back and forth to Colorado now, I have not once seen my mother prepare any food. If we are not here, she simply does not eat: she weighs 95 pounds. Her mind is improperly perceiving sensations of hunger, so the closest she can get is obsessing on her dogs being hungry – after she’s fed them 7-10 times in a day. She eats like a horse if we can corral her long enough from her wanderings to actually stay in one place long enough to eat. And now that she’s starting to eat again, she’s far less worried about the dogs. This is common in Alzheimer’s: obsessive/compulsive behavior and misplaced, projected physical sensations.
All in all, this is the most exhausting and emotionally challenging experience I have ever had. We lost my sister, her husband, and my father to cancer, and those were brutal, terrible experiences. This is worse.
As my cousin Sandie told me, whose husband also suffers from dementia, we have to think with our heads and not our hearts. Unfortunately, every step forward will likely result in our mother becoming more angry, more paranoid, and more certain that we are to blame for everything she is losing, including her own mind. Despite the overwhelming evidence of both her disease and our devotion to her health – including both of us coming from out of state, leaving our entire lives behind to care for her – she can’t see any of it. Her world is tiny and closing in around her.
And us too.