Author’s Note: My mother died in April, 2015. This article was originally written in 2014, and now appears as a chapter in my book, “Dementia Sucks: A Caregiver’s Journey – With Lessons Learned.” The message is worth repeating, especially at this time of year, when so many of us are either grappling with caregiving or missing those who are now gone. May this bring you some clarity, peace or enjoyable diversion. – Tracey
Growing up, I was often disappointed by my parents’ lack of awareness of my needs. We were not at all wealthy, and my folks had other things on their minds. The baby doll I had to have; the cool watch I really wanted for my birthday; a bike that could be adjusted for my short little legs; these material gifts occasionally appeared, but usually long after the initial urgency had passed.
What I appreciate most about my upbringing is that I learned to VALUE things. My parents encouraged me to work for what I wanted. I did chores at home for my allowance. I got my working papers at 14 and started a part-time job while in high school. I haven’t stopped working since.
I’ve always loved to give gifts. Knowing someone well enough to guess what might please them, presenting the carefully wrapped item, watching as the accompanying card is read, feeling the anticipation as the paper comes off and hearing the response. Getting it right is so satisfying.
As my mother aged, she would try to give me her stuff. While I appreciated that she no longer needed certain things and wanted them to go to good use, it was hurtful to me when she’d try to return something I’d given her. Once her independent life ended, my perspective changed. I rescued a number of things she could no longer keep. I gave away much more than I kept.
Now, the kinds of gifts my mother gives me come through her windows of lucidity. These are double-edged swords that cut two ways.
This year, my mother’s condition has deteriorated a great deal, and she hallucinates constantly. Her speech is in- comprehensible most of the time. She mutters, talks to people I can’t see, and she can’t stand to wear her dentures, making her articulation worse. I typically spend about an hour with her at her group home, watching her rip up magazines, roll up paper tubes, reach for things only she can see, calling out to who knows whom. I hug her, kiss her, try to talk to her. I ask if she knows me, and she shrugs. Eye contact is rare.
As I get ready to leave, something clicks and she plugs in for a moment. And that’s when she gives me the goods. In August, after I’d seen her through a bought of sepsis, she gave me a big one. She’d slept on a sofa through most of my visit while I hugged her and sang to her. I was taking my leave, saying good bye. Suddenly alert and seated in her wheelchair, she looked me straight in the eye, and clearly told me “Don’t feel guilty for leaving me here.” (I didn’t, but it was great to hear it from her).
In November, as I kissed her good bye, she looked at me and asked simply “You know what I do?”
“No Ma, what?”
“Love you.” I made it home, told my husband what she had said and cried.
Last week, after an hour of no conversation whatsoever, as I rose to leave and kissed her cheek, she said “Be careful how you go. I love you.”
My mother has a good appetite and eats well. She no longer receives any medications, as her prognosis is so poor. She’s on hospice, which is a service that provides comfort and monitors her for pain. Her affection for her care- givers is evident. On some level, in the shifting quicksand of her existence, my mother knows she’s in the right hands, that she is loved and she will never be alone or afraid. And that’s one of the last gifts I’m able to give her.
Letting me know that she knows is one of the last gifts she’s able to give me.
Enjoy your life and please let those you love know how you feel. Shared presence is the best present of all.