I’ve written a lot in the last several months about saying good-bye to Mom. I’ve focused on the good memories, the poignant sweetness of my last few visits with her, and how much I miss her now that she’s gone. I’ve received lots of positive feedback, a lot of it similar to this recent e-mail from a friend.
Sue: I have also loved your posts about your mom; you continue to honor her as you did when she was still on earth and I give YOU honor in that.
My response: Thank you for your continued encouragement about my writing. Without the day-to-day stress, and especially now that her struggle is over, it has been easy to focus on the positive aspects of our relationship. I sometimes feel guilty about some of the negative things I included in my book, but they were truth spoken in love, and I think it’s important to tell both sides of the story. Otherwise people who are having negative experiences think there is something wrong with them. In fact, I just may have to write a post about that!!
As a caregiver I was told that I was an angel, a saint, the most wonderful daughter in the world. I didn’t feel like an angel or a saint, and there were times when I felt anything but wonderful. The longer I served as a caregiver, the tighter the halo got and the less appropriate the labels seemed. I wrote one post about some of my less than proud moments, but it’s time for another one for any of you who think you’re the only one having a hard time.
One of the things I lost when Mom and Dad moved in with us was personal space. I’m a rather private person, and I need a certain amount of “me” time to be happy. On the other hand, as Mom’s Alzheimer’s progressed, being along frightened her. Before they moved in with us, she drew security from him and his constant presence, but as his dementia made him less reliable, she transferred her dependence to me. If I was out of her sight, she came looking for me like a child looking for her mother. She lost her ability to focus on books or TV, so she was often bored and looked to me for entertainment, but she rarely wanted to follow my suggestions. She continually searched for something to restore her sense of stability and order, and that was something I couldn’t do. Her frustration became mine, and in my frustration, I avoided her.
Some of my avoidance was legitimate. For the first few years of our cohabitation, I continued my career, working out of a home office. I was often on the phone with a customer and couldn’t stop to interact with her. But even when I was available, if I heard her prowling in the next room, searching for me, I retreated behind my desk or the closed door of my bedroom. One day I didn’t move quickly enough, and she saw me disappear around the corner.
“Are you running away from me?” she said. Her perceptive instincts lingered long after her logic fled.
“No, why would I do that,” I said, feeling my halo tighten a little bit.
One of the reasons I avoided her was her desire to help. Any time she heard me in the kitchen, she poked her head into the room and said the words that affected me like fingernails on a blackboard.
“Can I help?”
When Christian was little, I loved having him sit on the counter while I cooked, stirring, tasting, making a mess. It was fun, because even when he dropped eggshells in the cake batter, I knew he’d do better next time. It wasn’t the same when Mom helped. She was a great cook before she was stricken, but now simple tasks were confusing, and she needed assistance with everything. It took me twice as long as when I worked alone, and it was more than twice as stressful. More often than not, I put her off when she asked.
“Not right now, thanks. I’ll let you know if I need help.”
Her smile faded in disappointment, and I felt my halo tighten a bit more.
Getting to church on Sunday mornings became quite a challenge, too. At first, it was a matter of waking The Kids, reminding them that it was Sunday, and encouraging them to get up and get ready. As their minds deteriorated, the process required more of my involvement. Eventually, I got up an hour before them so I could shower, dress, and eat before I woke them. They had their baths on Saturday, so we went straight to getting dressed. I laid out Dad’s clothes and helped Mom and then finished my own hair and make-up while they had their morning cereal and coffee. After they finished, I sent Dad in to brush his teeth while I fixed Mom’s hair and make-up, and if all went smoothly we were out the door by 8:45. But it rarely went smoothly. Dad didn’t want to get up, and his razor didn’t work right. Mom had been “rearranging” her drawers and closet again, and I couldn’t find her shoes. Coffee was spilled and neither wanted to brush their teeth. Mom’s purse had disappeared – again – and Dad didn’t want to use his walker. Mom couldn’t get her seat belt fastened, and Dad realized he didn’t shave after all.
By the time we arrived at church, I was in anything but a worshipful mood. Since I was Super-Caregiver, it never occurred to me to ask for help as I wrangled The Kids out of the car and up the walk to the door. The trick was to get Dad’s walker out of the trunk and around to his door before he tried to got too independent and fell and then get Mom out on the other side where she was more than likely tangled in her seat belt. One particularly morning, she managed to get unbuckled and out the door before I got the walker out of the trunk. She stood there in confusion, unable to remember if she was getting out or getting in.
“Mom, just close the door.”
She looked at me as if I were speaking Swahili.
“Close it! Just get out and close it!!”
As my voice got louder and more strident, her eyes got wider, and she was unable to move. I rushed around, grabbed her by the hand, shut the door, and dragged her with me, grabbing the walker and reaching Dad just before he tried to step up on the curb unassisted. Summoning what little dignity I had left, I held Mom’s hand and smiled at the sweet couple who greeted us at the door each Sunday morning. He shook our hands warmly, and she hugged and fussed over us.
“There’s my favorite family. You look beautiful as always, Helen. Are you taking care of this handsome man?”
Mom beamed and giggled with pleasure as she took Daddy’s arm, and the greeter turned to hug me.
“You are such a wonderful daughter,” she whispered in my ear. “God bless you.”
I wondered if she saw how impatient I was with Mom as my tarnished halo slipped down around my neck and threatened to choke me.
There were many other times of frustration, but there were more times of love and tenderness. I learned to relax when I could and forgive myself when I couldn’t. I’d rather tell you about all the tender times and skip the others, but that wouldn’t be fair. I wasn’t an angel or a saint, and you don’t have to be either.