Revisiting the Past

My blog will switch from hospice care for Mom to the subject of caregiving for a loved one with a traumatic brain injury, the focus of my life in 2002, when my husband, Hugh, suffered a TBI.

I have decided to publish a memoir about the journey of his remarkable recovery, and the insights I garnered from the intense experience of caring for him during that uncertain time. The title of the book will be "Learning by Accident."

I began writing this book in the ICU, a few days after Hugh was struck by a car while riding his bicycle. His accident occurred on April 13, 2002. An ICU nurse told me that a written record would be therapeutic for me, and it would help my husband remember things later on. She was right. That book filled up, along with others. I wrote for hours, days, weeks, months, years...always deciphering the story, always digging for meaning, trying to make sense of the senseless. I'll use this blog to post a few of the lessons I've learned, along with helpful tips for those caring for their brain injured loved ones. It's a long, slow journey, TBI. The slowness of it can tear your heart out if you let it. Here we go.

Epilogue or Epiblog, whichever you prefer

It's now over a week since Mom passed. I've cleaned out her bureau drawers and closet with my sister, Pat. I sorted her papers, notified social security, the bank, her insurance companies, and numerous others. A basket of mass cards calls to me to write thank you letters for flowers, meals, and masses said in Mom's honor. But none of this bothers me. It's the morning coffee...alone. Watching the birds... alone. Looking up from the newspaper to say, "Can you believe that?" and find she is not there, eager to discuss the latest politics. It's passing her empty room without the hum of an oxygen machine on my way to put another load of laundry in the washer. These small daily activities bring sudden tears. That large empty room, the made up bed. It's being moved to my sister's house next Monday. I'll redecorate and make Mom's bedroom a workout room. Will I still see her face looking up at me? Will I hear her voice in that room? I hope so. I never want to forget. She was too beautiful to forget.

Passing

Jule passed away in her own marriage bed with Rosemary, Hugh, and her youngest daughter, Mary by her side. She talked to Larry and my daughter on the phone the morning she died, remembering details about them, sharp as ever, but she knew she was nearing her last hour. She said to Mary, "I guess all the final details are wrapped up, right?" and Mary said, "Yes except for one. Could you give me twenty more years, Mom?"

"How about twenty more minutes," she said smiling.

Some of her final words to me were, "I love you so much. You are going to have a great life."

I wish the same for her. I pray she is deliriously happy in the arms of Bill, surrounded by those she has missed for so many years. Safe passage Mom.

It's Always About the Hair

Mom's energy has been sapped lately from struggling to breathe. She's sleeping a lot.

Sometimes she appears to be just plain sad. I always assume some deep or morbid reason for her sadness --the loss of loved ones, impending death.

What's wrong? I asked her last week.

"I can't do ANYTHING with this HAIR!" she said.

"At last! Something we can do something about!" I replied, and called our trusty traveling beauty stylist.

Becky pulls into the driveway and strides to the door with her big black bag.

Mom is waiting upstairs in the wheelchair, determined to have Becky trim her hair

just right this time--shorter in the back, longer in the front, just the right amount on the sides--it's no easy task to please a woman when it comes to her haircut.

Becky steps back to check her work after the last snip. Mom's been transformed into her luminous self.

Her eyes crease with a smile as she gazes in the silver mirror I hold before her. She lifts the puff of hair on her forehead to form a beautiful curl and smiles at herself.

"I feel like a new woman!" she says sounding stronger and happier than she has in days. Now there's a home remedy worth repeating!

For Mother's Day, I Got My Mother For Another Day

Beautiful morning, coffee by the window and Mom surrounded by gifts from her six children.--meaningful gifts--a nightlight hand painted by her granddaughter, Julia, a book on tape from Mary, a CD of Pat's family singing, a card that made her laugh out loud several times from Peg, a thick bouquet of flowers from Bill. We watched a slideshow of Mom through the years on my new Apple computer to music. She's resting, waiting for cocktails and shrimp at 5. Exhausted and obviously uncomfortable, she smiles constantly, stretching upward with that smile that always says, I'm so glad to see you! This Mother's Day is a bonus day, a gift. I love you, Mom.

Mornings

Mom sits on the side of her bed, white hair disheveled, blue eyes bright. "Good morning!" she says, before I hear her wheeze.
"How are you feeling?" I ask.
"Good so far, she smiles. And I slept like a baby. Thank God I can sleep," she adds. Her pink face shines, her stick thin black and blue legs poke out from under a short flower-sprinkled nightgown. I leave the room and stride across the hall to the mini fridge that holds her small vial of morphine. As I re-enter the room she chirps,"My appetizer," as she opens her mouth and I use the small dropper to release the drug under her tongue. "I always feel like a baby bird when I do that," she says.
"And I feel like the Mama bird," I say.
"How's your poor eye?" Mom asks. Yesterday, a bug bit me near my right eye and it's been swollen.
"My poor eye?" I laugh. "How's your poor body?" At this she shrugs. After sixteen months in hospice care, my mother would rather focus on any small ailment of mine rather than discuss her own. Afterall, we discuss her worsening health several times a week with nurses, social workers and other hospice caregivers. When she's with me, she gets to do the asking, the cargiving.
"Put some ice on that," she says, "It's red."
"Thanks Mom, I will."

Still laughing

Last night, after dinner, I visited Mom in her room. She was "snug as a bug in a rug" as she used to say to us when we were children. Tucked in with the ceiling fan running (it helps her to breathe better- but her room is so cold), she said for the hundreth time that week, "I love this bed!" I hopped on beside her and pulled the throw blanket over me. Two minutes later, Anna appeared in the doorway, paused for a second, then ran over and burrowed between us. We were all engrossed in a cooking show about three chefs battling to make the Guiness Book of World records for the highest sugar skyscraper in the world. Between gasps of awe or sorrow when a sugar pillar cracked, we laughed out loud and cheered for the winner--he constructed a white sugar Empire State Building over sixteen feet tall. Sometimes lifes greatest triumphs are felt lying down. Sweet moments.