One of the biggest challenges of my mother’s decline is that just as she needs more patience, kindness, and engagement, I am exhausted and have less to give. People who have lived through their elderly relatives’ experience of decline from a distance may have some understanding how difficult it is to be kind and understanding when your nerves are frayed. Those of us who live with and are primary caregivers for our loved ones not only have this daily course of frustration but also find that we experience our own parallel decline. Other than running errands, I go to meet with friends one evening a week. I haven’t had a true vacation in eight years, and no longer have the energy to engage in some well-loved activities. I feel like a shadow of my former self.
Yet, I’m fortunate that my mother and I have always had fun together and enjoyed our time together. Not everyone can say that. We still do get along well … for the most part. If she can focus on TV or a game or puzzle, we can laugh and it seems like the “old days” before dementia. Unfortunately, she has a new litany of questions and comments that almost always emerges during the course of the evening. Who has died? Who is alive and where are they? Do I go back home? Did I sell my house and car? Do I have money in the bank? I love you. Thank you for letting me live with you. And so on. Over and over again, sometimes for hours. This repetition fuels my impatience – I’m an introvert and need quiet time to decompress, so this intense back-and-forth is challenging. I try to be engaged but am embarrassed to say that I become snippier as it gets later in the evening – my own lack of generosity is disappointing. Eventually, Mom tires herself out and is ready to go to bed at about 9:00 pm. I am … relieved.
After Mom goes to bed, I change into my pajamas and watch TV, but I have little energy for anything new or compelling or intellectually challenging. I’m almost afraid to have wine or beer or anything stronger, as I don’t want “a drink” to become a daily crutch … and don’t want to fall asleep in my chair! I try to recharge, knowing that I will need to be patient, kind, and engaged again tomorrow. It feels like an unending obligation. Toby the cat comes over for a cuddle after Mom goes to bed, which is a nice treat for me. Toby and I spend a couple of hours trying to stay awake in front of the TV before slinking off to bed. Once I settle in, Toby comes to snuggle my legs and is still there in the morning. He’s a sweetie.
I am now the only one that my mother truly remembers, even though sometimes thinks I’m her sister. She knows my brothers – they call weekly and she loves talking with them, even if she’s sometimes confused about which of the three is on the phone! We’ve all learned to be flexible about who we are at any given time. She knows her caregiver as a nice lady who comes to see her, though she cannot recall her name. That’s my mother’s world now … five people whose names are a bit of a mystery. I feel a lot of pressure to “be there” for my mother.
People often suggest things that I should do – and I know they are right. In fact, I’ve given myself the same advice. I appreciate their suggestions and their ideas. Get out and take a walk during day. Find a way to take a break while the caregiver is there (though, really, she is here so I can work). Start doing your old hobbies again. Do something new. Here is a list of books/movies/TV shows. Yep, I’ve had these conversations with myself. I’ve made lists and schedules and I’ve tried to figure out how to work full-time, deal with my mother, and take care of myself. I know, I owe it to myself to take a break and enjoy my life. I’ve heard it all and pondered ways to make it work. These things end up feeling more like new tasks on my to-do list rather than joyful or relaxing experiences. The thing is, I’m just tired – not depressed or uninterested or confused or trying to be difficult. I’m just tired.
As a first step in trying to bring substance to shadow, I’ve started writing posts again. Wish me luck!
