Jennifer Kolari: 13 To Life


Caring for an Alzheimer’s Patient

The Long Goodbye

I used to call my mother the human calendar, so comprehensive was her memory. My parents have always lived with my family and many years ago, when my children were little, my mother watched them for me while I met with clients in our home, and kept track of all the minutiae of our lives. She remembered not just my appointments but every Crazy Hair and Pajama Day at my children’s school, not to mention all their extra-curricular activities. She was my talking calendar and saved me more times than I can count.
When your parent is sound in body and mind, especially when she is part of your daily existence, you tend to take her health for granted, and that’s how it was with my mom and me. Whenever I had free moments to consider the future, it was never a future without her in it, never a future in which she was different. When she began to forget things, never in a million years did I think she might have Alzheimer’s. I had no idea that her life and the lives of our family would change so drastically in such a short span of time.
The decline began slowly. Mom would forget little tidbits I had mentioned to her and then adamantly admonish me for never telling her in the first place. Then, she began to repeat stories and conversations that we’d recently had as if for the first time. Just general aging, I thought; nothing I or many other women I knew hadn’t done when hormonally challenged. But, soon, her symptoms changed.
There was huge confusion. Tasks she used to complete with ease, such as cooking a meal, became as difficult as solving a complex math equation is for a five year-old;  Impossible. And, she was so agitated and frustrated by these bouts of confusion that she would perseverate, going over and over the same thoughts or behaviours so as not to forget them, but in doing so disengaging with the regular life around her.
For me, the most difficult component of my mother’s Alzheimer’s is the disintegration of her ability to recognize our family. We have become the snow people on the lawn who gradually melt away and are completely forgotten. This has happened in reverse order—my youngest daughter was the first person my mother didn’t know, then her big sister and finally my son, our eldest child. Next, my sister, who lives in San Diego, became simply that “nice young woman.” Just over the Christmas holidays, my mother forgot me. When a parent doesn’t recognize you, it is sometimes difficult to recognize yourself, so overwhelming is the blow of being deleted from the life of one of the most significant people in yours. I was both sad and angry. I still am, but the second emotion is simply a manifestation of the first and this is something I’m coming to understand. Finally, there is my dad. She has forgotten their marriage, that he is her husband. But, she recognizes him—as her father. That this isn’t true doesn’t make it any less real for her, and at the very least, his presence affords her some peaceful familiarity with the world.
In The Memory Clinic: Stories of Hope and Healing for Alzheimer’s Patients and Their Families, Dr. Tiffany Chow discusses how both sufferers and caregivers must feel safe, healthy, happy and loved in order to flourish to the best of their abilities and that being able to meet these needs takes a lot of skill in learning how to balance the demands of daily life. The truth is that fulfilling these needs are not only essential for families in which sickness prevails, but for anyone trying to cope with the stresses of daily life. My mother and her illness have forced me to learn, and for that I am boundlessly grateful.

Caring for an Alzheimer’s patient compels you to change how you live. I now understand why the disease is often referred to as “The Long Goodbye.” I lose a piece of my mother every week. But, I also know that I have more of her today than I will a few days from now, so I stop and I notice; I remember. Some days are very difficult—when I come home, exhausted by my practice and by attending to all my children’s needs, to a disoriented mother who is homesick for her “real home” and has no idea who I am, the deleted daughter. I feel angry inside because even though it is her Alzheimer’s, I feel so hurt to have been so forgotten. But, some days, I transcend all these negative feelings by stopping, being with her, doing for her any little thing that will relieve her agitation for even just few minutes. In fully engaging with my mom’s situation, I shrug off the day and quit thinking about all I still have to accomplish. I only consider the moment, the one I’m having right now with my mother. This compunction to live in the present is the best strategy for me. I wish I could channel it every minute of the day.
There is an unspoken agreement amongst my family that my mother needs to stay with us, that we need to keep her as happy and safe as we can for as long as we can. Nobody formally discussed how we would do this, but everyone does their part, as if they just knew on a cellular level what was necessary. My nine-year old daughter reads books to my mother and colours with her at the kitchen table. My mother was a wonderful teacher and so enjoys these moments. My son has tea-time with her whenever he comes home from university, and patiently listens to the stories he has heard a thousand times. My sister chats with her long-distance every day even though my mom no longer knows her. My husband keeps up the light-hearted chatter and my middle daughter sings to my mom who has always adored music. We are a well-oiled machine. I’m so proud of my kids’ compassion and care. It affords my dad a break. He is aging so differently with his Smart Phone, lap-top and visits to the gym.

This disease has made our family unit even stronger and no knowledge is greater in its ability to comfort those left behind. There are flashes when I feel like some part of my mother still knows us.  I can see it in the warmth of her smile and in the moments at the end of a hug when she doesn’t let go. My youngest daughter said it best when she put her small hand on my shoulder during one of my sad moments. “Don’t worry, Mommy,” she said, “Nanny remembers you deep down—I know she does. She just can’t find that memory right now...”