16 July 2015

...These Are The Days Of Our Lives

I've been busy in a kind of "time warp" situation. I've started blog entries at least twenty times and then something has happened and scrambled my brain to the point I haven't been sure if I'm believing what I'm seeing or seeing what I'm believing. Sound confusing? Welcome to my world.

The past few days I've been doing my 24/7 care-giving gig to both of my parents and then retreating during "quiet" moments up to my room where I have been intensely engaged in about twenty different "words with friends" games while streaming "The Andy Griffith Show" on Netflix and trying my level best to forget what I am hyper-actively engaged in. It works, somewhat, and for the few moments of sanity it affords me, I'm deeply grateful.

In the past month, my parents have lost so much cognitive ground that I know I probably sport a "deer in the headlights" expression on  my face because even though I'm witnessing every terrifying intonation of Mom and Dad's profound dementia, it still startles the living heck out of me.

This is where I must first and foremost tip my hat off to Lower Cape Fear Hospice because if our team of angels were not holding my hand during this phase of deterioration, I wouldn't be able to function or face any of this. Our incredible nurse Olga, CNA's Patti and Teresa and my own personal angel, Social Worker Kim, help me find the courage to face each new day and whatever terrors it may hold. They dole out showers, shaves, physical check ups and active listening with a compassion that never fails to give me more courage for whatever the next day holds.

I'm not going to even pretend I'm not exhausted because I am. Physically, mentally and emotionally. Summer has always been my most favorite time of year but this summer will go down has one of the most challenging seasons of my life. I have to work really hard to summon the joy that summer has always afforded me because watching two of my favorite people fade away right before my eyes is heartbreaking. I don't know how I'll look back on this period in my life, but for right now, it's painful.

And yet, there have been some sparkling moments that have shown up unexpectedly, completely out of the darkness. My dad has always been a big fan of Chrysler Minivans. With all due respect to Chrysler and minivans, I've never been a fan. When we finally convinced my dad a few years ago to give up his car keys, he titled his 2006 minivan, with all of 30,000 miles on it, over to me. I didn't celebrate because it was never a car I cared to own but for insurance purposes, I titled it in my name and tried to pretend I was driving something else. This past May my buddy John, sensing my disdain for the white mess, suggested I drive a car he had restored to practically "show room" new. It's a 2001 Lincoln Town Car and yes, it's HUGE, but it drives like a dream and the back seat comfortably accommodates my 110 pound Newfoundland mix Cleo and the front seat is a favorite spot for the more diminutive Cairn Terrier mix Sailor. To be honest, nervous driver that I am, I feel safer navigating a big car than a small one and so I started driving the Lincoln and felt quite comfortable and safe on the wild, tourist filled roads of Wilmington. I must admit the leather seats, impressive cooling system and bells and whistles are a lot more inviting than the minivan and I actually enjoy driving around in it. Hey, I could always be an Uber driver in this car because it's a lot like the transportation I take from La Guardia into Manhattan when I visit Katie, John and those adorable twins.

After a few weeks, John made me a proposition; he offered to trade me the Lincoln for the minivan - straight up, declaring he could strip the van and use it as a work vehicle and I would no longer have to look at it in my driveway. I was stunned and excited...and then, as we got closer to making the trade official, I was blindsided by a wave of guilt and sentimentality. Every time I would go to clean out my belongings from the van, I'd feel a wave of imagined retribution, as if I was somehow betraying my Dad by removing the last vehicle he would ever drive. I'd rifle around the compartments of the van and see the legal pad he faithfully kept of the mileage, gas refills, trips he made and recorded in his shaky handwriting, run across his ziplock bag of pipe cleaners, toothpicks and matches and before I could go any further, I felt wracked with guilt. The miserable minivan may have been titled in my name, but I could feel my dad's presence all over it. I became static - unable to move forward with the trade. John most kindly allowed my delays at heading over to the DMV because I believe he sensed I was involved in some kind of internal tug of war. He didn't push me and for that I'm grateful.

One evening, about three weeks ago, I caught my Dad looking over the padlocked back gate and when I walked over to him, I asked him what he was doing?

"Who does that car belong to?", he asked. I explained it was our friend John's and that he'd left it here for me to test drive. I then asked him if he'd like to see inside of it, to which he eagerly agreed.

I took my Dad's hand and walked him through to the house and unlocked the side door and slowly helped him into the passenger side of the Lincoln.

"Wow, this is fancy. This is a really nice car!"

I asked him if he'd like to take a little ride in it and he said yes. I belted him in and backed out of the driveway and drove around a few streets in the neighborhood. He "ooohhhhhed" and "ahhhhhhed" over the smooth ride, the thick comfortable seats and unblemished interior. "This is a really nice car, Susan! And he's letting you drive this for free?".

I screwed up my courage and said, "Daddy, John said he'd like to trade me this car for the minivan. What do you think about that?"

Dad studied for a minute and then asked, "How much would you need to pay him extra?" I told him John wanted to do a straight up trade - wouldn't cost me a dime. Dad was incredulous. "You mean you wouldn't have to pay anything extra?" I assured him that I wouldn't - it would just be a matter of paperwork and changing insurance.  He was quiet for a few seconds and then leaned back and said, "Well, you better go call him right now and tell him YES before he changes his mind!" I asked him again if he thought this was a good deal and he said, "Oh yes, call him right now and tell him yes!".

I can't even tell you what my dad's response meant to me. It was like some really heavy chains broke and I suddenly felt free to get rid of that stupid minivan. In fact, I didn't truly realize how encumbered I'd felt until he said those words.

We pulled back into the driveway, and I helped Dad out of the car and walked with him around the Lincoln, raised the hood and showed him the motor, not that either one of us could truly identify many of the parts, but it looked impressive. I had him sit in the backseat which is a lot like sitting on a huge comfy leather sofa and he just shook his head and said, "And John wants to make an even trade?". I reconfirmed that he did. "Go call that man and tell him yes!".

I walked daddy back in the house and he went in his room and I heard him regale my Mom with his little adventure in that nice big car. She had no idea we'd left the driveway but she doesn't tend to move out of her chair after dinner so I knew we would be safe taking a quick tour. Twenty minutes later, he was still bragging on his ride and I had to smile as I heard him tell her how nice it was.

I climbed the stairs and called my buddy John and told him I would meet him at the DMV any day the next week to make it official. I then explained how I'd become paralyzed by getting rid of the last car my dad would ever drive and apologized for taking so long to complete the trade. As usual, John was understanding and kind and said, "Not a problem at all. Glad it worked out.". What a friend.

I know that might sound crazy, such a love/hate relationship with my dad's car and finding it hard to let go, but the truth is that in the last few months I've lost so much of the true essence of my Mom and Dad that I couldn't control, that when it came time to proactively make a change, I found myself stumbling and dragging my feet.

Letting go is a tough business. In these long, hot days of the summer of 2015, I'm losing so much that is preciously near and dear to me. Most days I don't believe my parents really know that I'm their daughter. Oh, they are polite and affable, and they know I'm the source of their meals, meds and I'm definitely the "go to" person who straightens out the television when my Mom pushes the wrong button on the remote some twenty times a day, and the expert on dialing the phone on the rare occasions my dad tries to make a call to his sister in West Virginia, but as for truly knowing I'm their daughter, I don't honestly believe they have a clue. I'm "Susan", but not their "Susan". I think that's because their "Susan" is something like 8 years old and engages in dangerous pursuits such as swimming in the pool past dusk and walking outside with the dogs in the backyard after dark. My Mom has identified me as her coworker, good friend, neighbor and nice lady but as for believing I'm their kid, no way.

It is what it is. I'm grateful for what I've had and those angels among us (great friends, family and of course Lower Cape Fear Hospice) who are helping all three of us as we make our way through this huge transition.

One of the biggest challenges is fear. Ambiguity. I know what the end game will be, but it's stressful to wonder how that will play out and what it will look like. Those thoughts can really mess with your head and it's a lot of work keeping fear at bay. I'll be honest, I don't really want to see anyone die - who does? The expectation of the imminence of death casts a thick, smothering pall but I do my best to swat it away. Some days I'm better at it than other days and again, remembering to take it all one day at a time is the best defense.

There's a gazillion lessons in this situation and I'm sure a lot of them will not be known until this is finished. Until then...I take advantage of every chance I get to grab Cleo and Sailor, crank up the Lincoln, turn on the iPod to the B-52's "Love Shack" and smile as we run what I call "micro-errands" if for no other reason to grab an iced tea at Smithfields.

And then, there's this. As sad as it is to watch two people you love lose their abilities, faculties and all that goes with it, I'm grateful that I am allowed the privilege of watching my ten and a half month old granddaughter, Evelyn, learn how to feed herself, grab for my face, pull my hair and burrow her head into my arms when she's ready for a nap. How amazing is that? I'm living in the middle of a crazy circle of life. I'm the Nana to three incredibly precious granddaughters all under the age of one who are learning their way through the first year of their lives and it's just beyond imaginable. As nuts as my present circumstances sometimes are, I have to remind myself that life is springing up all around me in these three precious gifts. Evelyn dazzles me, charms me and makes me laugh often. My hearts sometimes feels as if it will burst from the miracle that she is. I check Instagram several times a day for photos of my NYC granddaughters and before I go to sleep at night, I look at those images and no matter what else might have gone down in my day, I am entranced by these new lives. All three little girls are coming into their own. 

I had to giggle as I woke up this morning - after spending the day with Evelyn yesterday, she'd left her little toy "Minion" in my bed so this morning I woke up to the "ha ha" of this tiny toy...an amusing reminder that life DOES go on and goes on well. 

How can I not feel blessed?