Sixteen and dressed in my first "dress-up" dress, arm in arm with a dad who had bravely ventured into uncharted waters (Daddy-Daughter Dance!) all for the sake of giving his little girl a great 16th birthday - we walked into Wellman's Bridgeview theater in Valparaiso, Indiana for the sole purpose of dining on fancy food, dancing to the strains of Duke Tomatoe (his spelling!) and his All-Star Frogs, and spending the evening as buddies.
We giggled and ordered and chatted about all things silly. Dad's eyes sparkled with excitement as he discussed the invention ideas that were swirling around in his head. We ordered things familiar (meat & potatoes I'm certain). When dinner was over we sat and watched as other daddy - daughter combos took to the dance floor and politely, stiffly moved as if keeping mental time "one-two-three, two-two-three, three-two-three..." to a familiar waltz.
Soon we decided to join them. Dad, ever-so-politely-and-gently, holding me as if I were a fragile doll, danced with smooth steps, leading me across the floor like Cinderella dancing at the ball. "Hug me, Dad, I won't break!" I told him, giving him permission to hold me tighter as we danced the night away creating a memory etched in time - a memory from a lifetime ago...
Yesterday I visited my parents. Yesterday's visit was to a "rehab" center where both are in transition - where we all are in transition. They are adapting to living in an environment that will keep them safer than at home: no more falls down the basement stairs (that I just discovered has happened - how is that possible - I've been there almost EVERYDAY for decades!!!) with dad "doctoring" momma, thinking his tender care was enough... no more "deciding to lay right here because I was tired" - when, in fact, his muscle weakness (caused by Advanced progressive Frontotemporal Dementia) "caused him to lay down" on the kitchen floor, on his back for hours - while Momma walked blindly through the house looking for her honey - scared to death he had died because she couldn't remember him speaking to her when he'd asked her to help...repeatedly.
Their house had become evil to them, no longer providing a safe haven - a respite. When walking in and finding Dad on the kitchen floor, last week, and the subsequent hospital stay where they BOTH were admitted for 4 days - I soon discovered that I was not enough. I was - I am not enough. My love for them did not protect them enough. Their every day care: personal needs, physical needs in the environment, and running the end of their business - in each area I AM NOT ENOUGH. They need more, better, additional.
The amazing care teams at the hospital (each in separate hospital rooms for 4 days- what a challenge!) were not enough. Staying there 'round the clock with them, devoting most of my time to the little girl who wondered where her sweetheart was - who has no current memories but darned-well remembered "oh honey, your dad scared the STEW out of me! I've NEVER been so SCARED, finding him on the floor!!!" - kept pulling out IV's in attempt to leave her bed and find him - she had to find her love - her honey, her sweetie. I was not enough to comfort. Not enough to keep her safe from herself. She needed more care than I could give - more than the nurses and the aides and I could give, together.
He, mid deeeep-sleep, would reach his right hand out patting, looking to touch familiar legs he'd traveled through life with - finding only the hospital-bed railing and settling back down, once again... until apnea would cause him to awaken and reach for her again... and again...and again. He'd awaken and seek her. Feeling his body betray him, he often discovered he'd had an "accident", with no prior warning. Although he has more memory intact, the damaged part of his brain creates a situation that his muscle control is deeply affected, now with hands shaking, demonstrating Parkinson's - like muscle tremors, all part of the FTD (Frontotemporal Dementia) and it's debilitating effects on his body. I am not enough to keep him clean, or safe, or balanced and off the floor.
The hospital staff created a situation where mom could visit dad's room - all day.
Meals were delivered to both of them, as we placed them facing each other in rolling recliners, locking the wheels with one bedside tray between them- as they ate breakfast and lunch ("oooh, yum yum!" mom would exclaim) each happy as clams while rubbing each others' feet under the table, giggling like school children, and sharing their "how we met" story a thousand and one times, to people who truly honored them (while other buzzers were going off all around them).
Their love: demonstrated in smooches, hand holding and the palpable DRIVE each had to be reuinited with each other - indeed, their devotion to each other resonated through out ER, the cardiac unit and through out their entire care team. Their love was transforming to all who witnessed it.
Throughout their stay, I was told multiple times, "oh they remind us of the Notebook", and one doc stated: "I'm not generally a fan of 'chick-flicks', but your parents remind me of 'The Notebook' ". I've not seen "The Notebook", and as life progresses as it does with often the forest hidden by the trees, I kept thinking: "which part? the enduring love? the memory loss? the incontinence? the fear? which part?" Still seeking enlightenment, I inquired of a few of the nurses who had loved my parents with ever-so-patient care, who tenderly advised me (with tears brimming their eyes): "honey, I don't think I'd ever watch it, if I were you... Nope, don't..."
The doctors, case workers, social workers all danced the most lovely dance this past week. From the moment my parents arrived in their care, they created an opportunity for both parents to stay TOGETHER - to receive ongoing, around-the-clock care - to help them "transition" to "rehab" where they will receive nurse-skilled care "until they are stronger"... allowing me time to get their affairs and finances in order so that all they've worked for all their lives - will take care of THEM, now...
As I left them, yesterday, after our sweet visit - reaching for my Dad I was transported back to our Daddy/Daughter date 39 years earlier. Yesterday, he, once again hugged me with an ever-so-gentle touch - this time, not as the "fragile doll" from our dance... this time was accompanied by a distant look in his innocent eyes waiting to walk down the hall for dinner. "HUG ME, Dad! I won't break!" I heard the words escape my mouth. In an instant, a sparkle shot out of his eyes, his face regaining a presence of mind as he giggled and began a story to the sweet little aide: "I took my daughter dancing one time, and that's exactly what she said to me: "Hug me, Dad, I won't break!"
Momma patted his arm, grinning ear to ear: "see honey, I knew you'd have a great time together" (ah-ha! SHE was the date-instigator! thanks momma!:)
The aide holding momma's right hand, momma's left hand holding pop's right hand walked hand-in-hand toward the delicious smells coming from the dining hall. As we walked together, momma repeatedly stopped to smooch her man and he repeatedly grinned as he smooched her back -giggling that they had already had "dessert"...
Sitting here writing, I was hoping that pouring out these thoughts would help purge my heart of the pieces that are broken. I cannot be enough. While this knowledge is a gift, this knowledge is also a curse - for in coming to terms with the enormity of this truth - I face the rest of their days knowing there will be others who will help them live safely. There will be others who receive the benefit of seeing unconditional, enduring, transforming love in action. There will be others who receive the gift of a heart-felt compliment by a little elder girl who can't see them who will tell them: "you look so pretty today!" (and means it!)...
... alright, I get it. Time to release them to share their love with their new environment. In releasing them they are free to be Love to their planet.
(Oh Lord... they are yours. Thank you for my parents and their example to my life. Use them to reach their world - exactly where You place them, and help me release them to YOUR care. Thank You, God, for comforting them and giving them Peace amidst these changing circumstances... Please Lord - HUG THEM, Abba (Daddy) , so THEY won't break... Thanks, Lord... Amen.)
Oh my gosh....how this brings back memories of my precious, sweet Mama....Thank you Judy for sharing this. You truely are a rock! D
Posted by: Deb Smith | August 11, 2011 at 12:11 PM
Thank you for sharing Judy. I loved reading this and being a part of this amazing love story, even for a minute. What a special bond they have and you are so blessed to have witnessed that. You are a truly extraordinary daughter.
Love you so much-
T
Posted by: Tristan | August 11, 2011 at 08:39 AM