I Miss You Daddy...Thoughts of Saturday Mornings, Warm Coffee and Pipe Tobacco

Before dementia began eroding my parents' lives, and even after it began, every single Saturday Morning I would run downstairs, my Mom would be in the kitchen trying to figure out how to put cereal in the bowl but not wanting any help, and I would pour two large mugs of coffee with just a tad of cream, place it on a pewter serving tray that a coal mining executive had given my dad decades earlier, and slip into my parents bedroom. It was usually about 10:30 or 11:00 am, and my dad would be sound asleep. I'd put the tray down, run over to his desk and fill his favorite pipe with the proper amount of tobacco (I learned this from an early age), grab his lighter and then gently scoot in beside him and say, "hey, are you going to sleep all day?". After a few seconds he'd wake up, slowly open his eyes and I'd be holding his mug of coffee. A smile would light up his face. "Well, look at this - room service!! I love you, honey!". We'd settle in and I'd prop him up in bed with several pillows, by now either Sailor or Cleo would be on the bed along with us, and I'd hand my dad his pipe which he would promptly light and another smile would break out as he took possession of his coffee. "Mmmmmmm...now this is good.".

This became our Saturday and Sunday Morning ritual. After dad was awake enough to draw on his pipe and sip his coffee, he'd begin regaling me with tales...stories I'd heard countless times but with his Jimmy Stewart-esque delivery, I never ever got tired of hearing them. He'd tell me about the time his family moved from Itmann to Keyrock, and how his brothers, Otis and Dick were in charge of walking with their cow, "Old Pet", through the mountains to their new residence and how, when the rest of the family had settled into their new house for the night, his Mom and Dad were getting visibly concerned because Dick and Otis hadn't arrived yet. FINALLY, they arrived just as darkness was falling and the family was reunited. Or maybe he'd tell me about the times he had to "sit up all night with dead", a practice that was common back in the 1930's - 1950's in southern WV. "What in the world would you do, Daddy?", I'd ask every single time. "Well, we ate a LOT of food and situated our chairs around the coffin that was usually in the living room or dining room. We'd tell stories and try not to nod off!". I'd ask him, "why did people do that? what were they expecting to happen?". He'd laugh and say, "I don't know honey, it was just something we did...out of respect.". But he added, "oh sometimes we'd get to telling stories and laugh and have a good time!". I would smile because I knew if my Dad was in the middle of it, it had to be an entertaining evening.

Sometimes he'd tell me stories about his time in the US Navy...lots of funny stories and a few that would break my heart no matter how many times I heard them. Then, as I often did, we'd bring it back to the 1960's and I'd pull out a diary from, say, 1966 and the first time we vacationed at Wrightsville Beach and the little cottage we rented facing the Sound. He'd always vividly describe my eyes when I first saw the ocean - how mesmerized I was - "You LOVED it! Right away! You never wanted to leave!" and then, we'd marvel at how we lived just a few short miles from that spot and how much history had passed between us.

I now look back at those Saturday Mornings and I swear I can almost smell his pipe and see the steam coming up from those special cups of coffee. He'd throw his arm around me and always, always we finished up with a hug and he'd look me straight in the eye and say, "thank you for taking such good care of your old Mom and Dad". I drop tears when I remember those golden moments, but I smile as well.

When you're in the middle of such moments, on some level you know they won't last forever, but you can't and must not dwell too much on that because it will take away from the present, from the magic of it all. I never really allowed myself to consider that this wouldn't go on forever, even though intellectually I knew that it could not.

On this day before Father's Day, I look around my bedroom and I have a large bookcase next to the secretary that my parents bought around the same time I arrived on the scene. In the bookcase is every single volume of my Dad's diaries; forty-seven years of our shared lives are in those handwritten books. I haven't read all of them - but I look over at them and I feel my Daddy right here with me. Every word he wrote was deliberate and a tangible legacy of the lives we were blessed to share together.

My Dad was simply the quintessential perfect father - the guy you would surreptitiously connive with to get Mom to agree to something she wouldn't normally acquiesce. The man you could confidently share your dreams and also your deepest fears with in complete safety and without any fear of being made to feel silly or ridiculous. He was the comforting hug as I went through a divorce, the stalwart cheerleader when I acknowledged that it was time for me to get sober, the champion who always figured out a solution to a situation that perplexed me and the guy who made me believe I was so much more courageous, stronger and smarter than I would often feel. He became that voice that challenged me to step up to the plate, no matter what it was, and congratulate me when I did - whether it was finally leaping off a diving board when I was ten years old, or the night before major surgery when I was 34 years old or right before an interview for a job I really wanted. In my eyes, he was as close to the "perfect father" I could ever imagine - a fount of love, encouragement, understanding, humor and delicious mischief!!

Daddy, this is my second Father's Day without you and even though I miss you as much as I did in the hours after you left this earth, I'm so GRATEFUL for the stock of memories you left me with. I feel your direction, hear your voice and honestly am aware of your presence every single day and what an amazing gift that is!! I miss our Saturday Morning coffee klatches but my gosh, weren't we incredibly blessed to have so many of them?? I know that's what YOU'D say because you always spun grief into gratitude - and I'm learning to do the very same thing. Thank you for being the most incredible father anyone could ever hope to have and for loving and providing for our family through everything. I personally hope you're sipping a cup of hot coffee, drawing on your pipe packed "just right" with your favorite tobacco and holding my Mom's hand because if you are doing those things, then I know you are happy and content.

I love you, I love you, I love you...always and forever.

Learning to fly...

This is me, opening the door just a smidgen. It's been a heck of a strange, bewildering, surreal five months. Here it is May 2016 and there are still so many moments when I feel as if I've been wrongly cast for a supporting role in a play I didn't audition for and how I got here is still, after all this time, a profound mystery to me. 

If you would have told me on January 6th, 2016 everything that was about to unfold in the next twelve days, I would never have believed a word of it and then, just on the slim chance you knew what you were talking about, I would have run like hell. Fast. I would have sprinted, in fact. Which of course isn't true at all because this was always going to be part of our story. It just wasn't the part that I was looking forward to, but as painful as it was, I honestly wouldn't have traded places with anyone. 

One of my favorite episodes of "The Andy Griffith Show" is one called "Opie the Birdman". While playing with his new slingshot, Opie accidentally slings a stone at a mother bird who has three babies in her nest. The mother bird is struck dead and Opie is devastated. Later that evening at the dinner table, Andy mentions to Aunt Bee that as he was picking up the newspaper from the walk he noticed the dead bird and assumed that a neighbors cat was the culprit. Opie abruptly asks to be excused from the table and Andy puts two and two together. He goes up for one of "those talks" with Opie and confirms his suspicions that Opie killed the bird and reminds him that those three baby birds are waiting for their mother who's never going to come back and take care of them due to his carelessness. (insert tears). The next morning Opie regroups and rescues the baby birds and, after accepting responsibility for his huge mistake, sets about feeding and raising the birds. A few days later, with the birds thriving and fluttering around their now very small cage, he is finding it very hard to imagine not having the birds as pets and doesn't want to relinquish his caregiving role. Once again ole Andy steps in and, while respecting Opie's attachment to his adopted flock, he reminds his son that there's one important lesson left that the mother bird would have taught her fledglings. When the time was ready, she would teach them to fly, even though it meant leaving the nest. (cue more tears and maybe grow a lump in your throat). Opie struggles but realizes his dad is right and screws up his courage and does the hardest part of all - helping the young birds transition from the cage to the wild. I love the last lines of this episode...

Opie: "Cage sure looks awful empty don't it, Paw?"

Andy: Yes, son, it sure does. But don't the trees seem nice and full?"

After my parents died and I walked into this house for the first time, knowing both of them were gone, those last lines from "Opie the Birdman" came to me...slightly edited.

Me: "Wow the house sure is quiet and empty.
Me: "Yes, but heaven must be brighter today and I imagine everyone is gathered around, listening to my Dad tell the masses how he proposed to my Mom on the third date and how it took her until the fifth date to accept".
Side note: I hope heaven has a pipe smoking section and rocking chairs. 

Of course being around for the "end game" wasn't something I thought about often and when I did, I dreaded  the notion more than a mouthful of root canals, but it turns out that a gentle transition is also an important part of care-giving, no matter how much it tears your heart out. And it does tear your heart out. 

It's painfully hard and somehow profoundly beautiful, Such a paradox. Such is life.

Down deep inside, I knew that someday I would be present and engaged for this part, too. But until January 6th, I chose not to think about it and really it wasn't until January 7th, after my dad collapsed in the bathroom in the middle of the night, that I began to understand Mom and Dad were beginning their own transition. There was no "pause" button - God I swear I searched for it - but just like the transition part of labor that signals the birth of a baby is imminent, my Mom and Dad's transition suggested delivery into a new realm was closing in fast. Inside I was silently screaming, "Whoa...no, wait, slow down please. What's happening here? I'm REALLY not ready for this." but the reality is that when everything is set in motion, there's absolutely nothing left to do but hold on and simply do the best you can. 

No matter how hard and exhausting the days of taking care of my parents were becoming, both for me and for them, I just couldn't begin to imagine what life might look like without them in it. They were tired and had very limited mobility. My dad could no longer navigate much on his computer and his world was shrinking exponentially from not being able to hear or walk outside unassisted and there had even been a few days when he had completely forgotten to smoke his pipe. My mom was becoming listless and even with substantial pain medication on board she still suffered every time she tried to move from the chair to the bed or the bathroom. They began sleeping more and more, waking up later and going to sleep before dark. While they maintained a sunny disposition right up until the end, they're conversations with each other and with me were becoming shorter. Looking back on it, I believe they were preparing for their next adventure and, as it turned out, they intended to begin it as they had done everything in the past 69 plus years of marriage - they were going to set off together...well, nine days apart, but that's basically together. It always took Mom a little longer than Dad to get ready for a trip. 

Even though I knew deep inside we were on our last legs, I still couldn't fathom or begin to imagine "the end" was looming right before us. I refused to consider how it might happen and determinedly focused my thoughts on micromanaging our dwindling savings and wondering how I could pinch more pennies and just praying over and over that I could keep them at home before our funds ran out. Or, for a change of pace, I would consider what their fate would be if something happened to me, if I got injured or seriously ill and was no longer able to care for them? What would we do? What would happen to them? To consider their deaths...well, I had plenty to distract me from truly focusing on the the end. My days were regimented and packed with meals, meds, hospice nurse/cna/social work visits to juggle, groceries to grab while they were being showered, light distractions to implement and for gosh sakes, I had to DVR "The Lawrence Welk Show" so I could play it for them several times a week!! If something were to happen to me, who would make their ice cream sundaes and play a loop of Lawrence Welk???? To imagine them actually dying? No, I had plenty of other concerns. 

I became the Queen of Denial. I also read a LOT of books and focused on my favorite genre - survival at sea. I've always loved reading about people who beat the odds in the most daunting and challenging of situations, particularly after their sailboat has been knocked down in a storm or rammed by a pod of whales or any other horrible disaster that could put you in survival mode offshore and in the middle of a really powerful, mercurial ocean. Aside from the adventure, books like this are rich with great advice on how to confront dire and horrifying situations; they are chalk full of coping mechanisms and believe it or not, they're life-affirming. They're terrifying but inspiring. 

I have reviewed my Facebook postings in the weeks leading up to January 6th and it's crystal clear I was aware of a gathering storm. If our house had been equipped with an "event" barometer, I think ours would have registered in the "batten down the hatches" range. I knew something was about to happen, but I had no remote clue that the "gathering storm" was going to be a dual Category 5 hurricane. Come to think of it, I'm grateful I didn't know. If I'd known what was about to happen, I couldn't have handled it. As it turned out, I actually did handle it and frankly no one was more surprised than me that during the following twelve days I didn't fall completely apart. Rather than a testament to my strength and fortitude the simple truth is that so many things were happening at such warp speed, there was absolutely no time during those days to squeeze in time to fall to pieces. I mean, there just wasn't an opening. It was a luxury I couldn't afford...thank God. 

I know the facts; on the morning of January 6th my mother fell getting out of bed to go to the bathroom. This wasn't new - she'd fallen several times in the past few months and I practically had the paramedics on speed dial - but she always seemed to land well...i.e. no broken bones, maybe a few minor bruises and sore muscles for a day or two but she'd never fractured anything. Yes, she was becoming more feeble and wobbly and watching her walk often made my stomach tense up but I just didn't see this mishap coming. Again with the denial - massive helpings please.

I was sitting at the kitchen table chatting with my Lower Cape Fear Hospice Social Worker, Kim, and my son had dropped in and was sitting on the sofa in the living room. He heard the "thud" and quickly alerted us that Mom had fallen. Kim and I ran to their bedroom and there was Mom on the floor and on the surface it looked just like every other fall except this time...she winced a little. I quickly called our hospice nurse Olga as Justin, Kim and I helped Mom up to the seat on her rollator. Mom denied any sharp pain and simply said her leg "hurt a little" but that she was OK. Olga arrived in short order, along with our CNA Patty who was on a routine visit because Wednesday was "shower day". Olga carefully examined Mom and concluded that although she didn't think anything was broken, she couldn't be sure and felt it would be prudent this time to call the EMT's and take her to the ER at New Hanover Regional Medical Center for x-rays. 

Now I was in a quandary. I couldn't leave Dad alone while I went with Mom to the hospital so Patty told me to call our caregiver sitter and see if she could make a quick run to the house. Fortunately she was free and made it to the house in fifteen minutes. In the meantime, I made the 911 call and the paramedics arrived for the 2nd time that week. My dad was actually asleep through all this. He hadn't woken up for the "morning" yet, even though by now it was noon. 

Shortly before the paramedics arrived, he sat up in bed to find the bedroom filled with people and groggily he realized something was wrong with Mom. I quickly brought him a cup of coffee and explained (loudly because he was almost completely deaf) that Mom had fallen and I needed to go with her to the hospital but that Kathy was going to stay with him and we would be back home soon. He was still sleepy but when the paramedics came in with the stretcher and loaded Mom on it, he snapped to attention. He was scared and confused but everything was happening so fast. Kathy took her position right beside him, held his hand and told him they would get to spend some good time together and she brilliantly diverted his attention to old photos, navy stories and did her best to keep him distracted. Kathy Pope is an angel and was my parents' favorite sitter, hands down. 

Justin was using my car that day so CNA Patty gave me a ride to the hospital. We followed the ambulance and she dropped me off at the entrance to the ER. It was a chilly, gray day, typical early January weather, and I imagined we would spend three or four uneventful hours in the ER, the x-ray would possibly show a deep bruise and we would be on our way back home by dinner time. 

I couldn't have been more wrong on all counts.

More to come...

...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?

Helpers...Always Look for the Helpers

"When I was a small boy and I would see scary things in the news my mother would say to me, 'Look for the helpers. You will always find people who are helping.'" ~ Fred Rogers

What timeless, sage advice Mrs. Rogers gave her son: "Look for the helpers". 

There's not a day goes by that I don't feel a few moments of fear, anxiety and dread. It's part of the territory of being the primary caregiver to my 90 and 91 year old parents who are in the progressively deepening stages of dementia. Most of the time I can duck and weave and slap those feelings away, much as I do the swarm of mosquitoes that attack as dusk approaches and I'm trying to find a few quiet minutes with a cup of tea on the patio swing. But sometimes, my aim is off and a stubborn, relentless wave of fear will take up temporary residence in my head.

There are many warm, rewarding and heart touching moments to be found taking care of my parents and some of it probably appears like a snapshot on a Hallmark card, but there are some experiences that deposit me on the fast train to crazy town. It is only because of my band of "helpers" that I haven't taken up full-time residency in Nuttersville.

Yesterday I decided to make a super fast trip to the drive thru of "Cookout" to order dinner for "the twins". After several days of working on the deck in heat indices of over 90 degrees and toting 4 X 4's that felt as if they weighed a ton, I was completely beat. Not that I didn't enjoy the diversion of being outside and helping to create something that improved the look and feel of my backyard (aka my primary source of escape), I was exhausted. I grabbed the dogs and made a mad dash for Monkey Junction. My daughter in law and one of my most coveted "helpers", was planning on dropping by with my granddaughter to hang out with me for a few hours. About five minutes after I left, Stephanie arrived and texted me that she was at my house and couldn't find Pops. Then she texted me back and said she did locate him and he was in the backyard, walking around the pool. 

Stephanie went out to him in an effort to corral him back into the house, teasing him that there was no "lifeguard" on duty and he needed to come inside. Of course he didn't listen and couldn't understand why he shouldn't be roaming wild and free around the perimeter of the pool. He paid no mind at all. When I got home, I saw him walking outside and ran to bring him in. I told him it wasn't very smart for him to be out there alone and in response he petulantly waved his hands and declared he was going to go to his room where he didn't have to listen to such nonsense. Fun fact - it's not a pretty sight when a 90 year old throws a temper tantrum, especially when he's your father and has basically been one of the most reliable figures throughout your entire life. 

Dementia is a mean son-of-a-bitch. 

I've been full-time caregiver to my parents for the last 3 years but when I think of the past two months, I can testify that there is no way on this earth I could be moving through these days without my retinue of helpers. 

Lower Cape Fear Hospice is first on my gratitude list. Because of them I now have Nurse Olga, CNA Patty and Social Worker Kim. I can't even begin to express how deeply grateful I am for their presence in our lives. I couldn't get through my "to do" list without their assistance, helpful guidance and vast resources and it is no small miracle that my parents were admitted to their care in April. I cried the day I signed the paperwork sealing their admissions. I'd cry even more if LCFH wasn't part of our daily life. Because of them I no longer have to figure out how to get my Mom and Dad to doctors' appointments, pick up prescriptions and address new concerns which arise almost daily. Hospice comes to us, bringing impeccable medical care, listening ears, copious compassion and lots of precious hugs. These "helpers" care for my parents in the same way that I do. With tenderness and compassion toward all three of us, LCFH has become an essential part of our lives and we are so much the better because of it. 

My whole existence right now involves keeping doors locked, medication schedules, meal planning and preparation, constant "elder-proofing" and putting out fires conjured by my parents' misfiring, diseased minds and wild imaginations. Last week my mother stuck 3 sewing needles into the power strip that her television and cable box are plugged into. She denies any culpability but the circumstantial evidence is damning. Two nights ago she swore she was leaving for a trip to West Virginia the next morning. I hid the keys.

I now jingle when I walk - I feel like Mrs. Hughes on "Downton Abbey" with keys hanging around my neck to fit every door lock, gate lock and the steel safe I keep their meds in. I sound like Santa Claus with all the jingling, but I'm not terribly jolly.

On top of the day to day stuff, I manage our quickly diminishing funds and usually my last thoughts before drifting off into a fitful sleep involve what will happen when we've run through our last dime and my mortgage company stops being fed. My thoughts turn to cancelling my health insurance - a hefty $520/month but I fear as soon as I do I'll be hit with a blown knee or visited by some devastating and expensive illness that will make $520 look like chump change, even though it's not chump change to me. 

I fear losing my home, my health and my modest possessions, but focusing too much on those things will ensure that I lose my sanity and while I can afford to lose a lot of things, I can't afford to lose my mind, so I don't linger too long on those thoughts.  I literally can't afford to do so.

Somehow, my daughter-in-law Stephanie knows when my emotional well is running dangerously low and just when I need it most, she sends a warm text, makes an unexpected visit and reassures me that she and Justin will always be there for me. She gives me hope, courage and strength and I would be so completely lost without her. Stephanie may be a petite young lady, but she's fierce and I'd trust her with my life. I'm so grateful for her support. What a stellar "helper" this young lady is to me. She provides me with practical solutions and she's always ready to roll up her sleeves and tackle the tough stuff, give me a break when I need it and hold my hand as I navigate these dizzying hairpin turns. 

Another helper that has appeared in my life is a wonderful lady named Kathy. She's a tiny dynamo of a woman who stays with my parents for a very affordable fee and allows me time to get things done that I wouldn't be able to do otherwise. I was so hesitant to reach out for such help but my daughter Katie had been lobbying me for months to get some relief. Our LCFH social worker, Kim, gently but firmly reminded me that taking a few hours off a week to take care of myself would enable me to be a better caregiver to my parents. I admit I was nervous and afraid the first time I left my parents with Kathy, but when I got back home three hours later, my emotional outlook improved dramatically and my parents genuinely enjoyed spending time with someone new who hadn't heard their stories and anecdotes. We were all refreshed and now I rely on Kathy's services to restore my strength and I welcome the opportunity to catch my breath, calm my thoughts and untangle the knots in my stomach.

Which brings me to another "helper". My buddy John is a man who literally can repair or build just about anything. Since I spend 99% of my time at home, my backyard is truly my onsite "happy place" and since I'm a person that would rather be outside than inside, it's pretty central to my mental health. My backyard sported a patio that was pretty much the ugliest thing imaginable. Since funds have been limited, the challenge of repairing and replacing the 12' X 26' eyesore seemed impossible and it would have been without the ingenuity and assistance of another "helper". John came up with a way to build a deck over the broken concrete by utilizing sales, discounts and some items from his own private material stock and donated hours of hard work and sweat to create a structure that far exceeded my expectations. I could never have afforded the masterpiece he built without his creativity and bargain finding acumen. He also very kindly took the time to teach me how to use a paddle bit, a chalk line, a hammer drill and invited me to join in, Knowing how much I love working outside, this whole deck building has provided a therapeutic diversion. When we wrapped it up I was sore, sunburned, sweaty and riding on a wave of endorphins, including the satisfaction of knowing that I had a hand in the construction. I'm so grateful.

One of the most incredible aspects of this whole care-giving experience is the magic of discovering so many people who step out of their own sane, unencumbered existences and step into my chaotic life bringing with them home-cooked meals, shoulders to lean on and hugs that literally sustain me. When I feel as if I'm running low or about to hit a wall, my next door neighbors Kathleen and Richard knock at the door with a fully prepared supper; unexpected flowers arrive from my friend Michel in Nantes, or my dear friend Jim who lives 1600 miles west of me in Amarillo, Texas builds an exquisitely crafted handmade wooden sailboat and it arrives on a rainy, grim morning at a moment when I'm wondering how in the world I'm going to make it through another day. 

I look around my room and see the candle and sea glass that my dear friend Karen sent me from Seattle, the sailboat pillow which arrived courtesy of my cousin in West Virginia, a coffee table book featuring beautiful sailboats from another friend Jeanne, who also lives in Washington State, a card from my favorite female sailor Bobbi who lives in Florida, a framed photograph of a frog hanging on for dear life from my dear pal Jayne in Charlotte, a nautical bracelet and daisy planter from an amazing cousin in Florida I have yet to meet in person - (I love you Linda!); on my nightstand is a wooden block with a Vivian Greene quote advising me that "Life isn't about waiting for the storm to pass. It's about learning to dance in the rain." which was a birthday gift from my daughter, Katie; sweet talismans that gently whisper, "you are not alone - you can do this - you will survive".

Don't misunderstand though - it's not just material gifts by a long shot - right now I covet the prayers and warm thoughts, heartfelt messages and healing energy sent on our behalf from friends, family and people I don't know but who message their concern - those prayers and messages are powerful and it's huge to consider so many people pulling for us! I can't possibly get through my life without those right now. They also whisper survival in my ear...

...and of course, I will. I'm determined. I will not be defeated. There are some days that I want to grab the dogs, jump in the car and take off. But there are far more moments where I am reminded of sweetness, a poignancy beyond description, the sound of my Dad telling my Mom, "I love you, I love you, I love you..." with so much feeling and emotion that I'm sure my heart will burst.

Last week, my friend Sharon and I spent 3 hours on the pier of The Oceanic. It was my second time leaving Mom and Dad with Kathy, and though we had long since finished our lunch, we sat there drinking tea, chatting, sometimes simply being quiet and looking out at the sea. At one point, I looked over toward the north end of the beach and was immediately transported back to June 1966, which was the very first time I met the ocean during a family vacation. Last week I stared at those relentless and familiar waves and for a few moments, with a clarity that almost frightened me, I saw my Daddy holding my hand, teaching me to ride the waves, showing me how to let them carry me to shore and in my mind I could literally taste the salt water spray as I remembered him saying, "Get ready for this one Suz - I've got you! Hold on - here comes a big one!  I won't let go...". I looked over at Sharon and shared my memory as salty tears dripped from my eyes. She smiled, handed me a tissue and listened. 

I have so many helpers to be grateful for, far more than I deserve, but I'm not in a position to turn a single one away because each one is a reminder of life,  the generosity of the human spirit and a bunch of people holding me up when it all gets to be so heavy and too much. I can't explain the timing and I'll be darned if I can understand how all of this cosmic Grace appears as it does. One thing I know for certain - I wouldn't be standing without the support and love of each person offering their hand and opening up their heart.

Thank you...so inadequate but deeply heartfelt. Thank you for propping me up. I'd be in a million crazy pieces without my angels.

Disorientation Orientation: Who is Who and What is What?

We're sliding backward at an alarming rate. It feels like being in one of those "House of Mirrors" you find at carnivals - I think they're called "fun houses" but trust me, there is nothing "fun" going on in this house.

Our latest escapade began last Friday Morning. I was upstairs brushing my teeth and I mistakenly thought my parents were eating breakfast in the kitchen. My phone rang and it was my neighbor Pat, who lives across the street, telling me that my Dad was in the driveway and walking with a very unsteady gait and she was afraid he was going to fall. I FLEW down the stairs (toothpaste still in my mouth) and bolted out the side door to find my Dad kind of walking in circles and sporting a huge gash on his right forearm with blood dripping all over his shirt. I took his hand and lead him inside. He was terribly disoriented and unhappy to have been "caught". 

My Mom had been on the back deck leaning over the railing, trying to yell at him to come inside but of course he didn't hear her. He can't hear anything. He had no idea she was risking a fall trying to get his attention. Thank God my neighbor spotted him when she did. 

When I brought him inside and sat him down at the table, I tried to explain that he shouldn't have been outside. He became indignant. I brought his cereal bowl over to him and got my mom seated and then I made a cup of tea and went outside on the patio to calm myself down before addressing what had just happened. When I went back inside, I sat down at the table across from him and I tried to explain (loudly so he could hear) that it's very dangerous for him to be outside like that alone and then I pointed to his arm and told him it could have been much worse than a gash. Uncharacteristically my Dad threw down his spoon, looked at my Mom and in the harshest tone I've ever heard him use, he said, "I don't have to take this! I'm going back to my room.". 

He didn't go back to his room. I took a photo of his injury and texted our Lower Cape Fear Hospice nurse, Olga, who immediately texted me back that she would be over soon and check out the damage and take care of it. Thank God for hospice.

I gave my Dad something to calm him down and reduce his agitation and then I gently hugged him and told him that we were so upset because we love him so much and want to keep him safe. He softened a little and when Olga arrived about an hour later, he was much more civil...but completely unrepentant. When Olga asked him how this happened he said he had no idea. She carefully cleaned the wound, applied ointment and then wrapped it in several layers of gauze to protect it from further damage. After she left my Dad asked me who she was. I was taken aback because Olga had been here just one day before to give my parents a check up, but my Dad claimed he'd never seen her before in his life.

The rest of the weekend kind of went downhill from there. I had a lot of work to do outside and my friend John popped over to very generously donate his time and skills by pressure washing the deck around the pool and then my very long driveway. What a friend! Meanwhile I went back and forth between trying to help John and putting out skirmishes in the house. 

On Sunday, my parents started the day out calm but things got weird as the day progressed. When I was growing up, my Mom always talked about how she'd  wanted to be a nurse so she took Sunday to practice. She unwrapped the beautiful dressing Olga had applied not once, not twice and not even three times but a whopping FOUR TIMES. Fortunately Olga left me with some supplies because I was scheduled to change it Monday Morning but my Mom had taken the carefully covered dressing and applied toilet paper and scotch tape - right on the gash. You can imagine how much fun that was for my Dad as I had to take it off and redress the wound with sterile bandages. It was as if my Mom was on some kind of weird loop where each time I would rewrap his arm, she would wait an hour or so and then take it off and put more scotch tape and toilet paper over it. I was completely stymied. I couldn't make either of my parents understand and I would have done just as well talking to a brick wall. I wasn't making "contact". They were both incapable of understanding anything. 

While all this pandemonium was going on, my buddy John was finishing the driveway and allowed me to drive a real car and take it to Harris Teeter and grocery shop - we were out of everything - and it was the first time in months I had been able to walk rather than run through the aisles of a store and stock up on so many staples we needed. That was a real treat and did as much for my mental state as it did for restocking our larder. 

The past couple of days my Dad's mental state has shown further signs of deterioration. I never imagined seeing my Dad in this condition. My dad was, to me, invincible, sharp, witty, savvy and oh so wise. My Mom's downward spiral is no less stunning, but it's taken a less abrupt dive. Her memory is shot and she's frequently confused by just about everything, but my Dad's decline has been much more rapid and dramatic. 

I feel as if I'm on one of those really dizzying rides and I'm trying to catch the attention of the person operating the controls, screaming at him to please slow this thing down because it's making me sick. That's exactly what it feels like. Last Friday I placed padlocks on the gates of my privacy fence to prevent my Dad from slipping through the gate and gaining access to the driveway or street. On Sunday, I completely misplaced the keys to those locks and that's truly not like me. It actually scared me that I couldn't find the keys and I have scoured the house, the garage and the backyard and my only conclusion is that I have hid them somewhere to keep my Dad from finding them. I mean, this weekend alone I had to hide scotch tape, paper napkins and a whole host of other things, not to mention all medication in the house is kept in a locked safe so I guess I shouldn't be surprised that my brain is finally saying, "Whoa...wait a minute...you're pushing your luck!!". My friend John stopped by with his bolt cutters, removed the locks and installed new padlocks and wisely kept an extra key in case I forget where the keys to these new locks disappear. Thank God for friends!

I'm also extremely grateful to my neighbor Pat who alerted me to my Dad's outside activity which precipitated this weekend from hell. And I'm deeply grateful to my next door neighbors, Kathleen and Richard Canizaro, who graciously provided us with a wonderful dinner on Monday and are providing again tonight. I am surrounded by angels and I can't even express my gratitude for each one of them. I couldn't make it without all of these extra helping hands and caring hearts.

This latest downturn has left me exhausted and stressed. I wake each morning with a sense of foreboding; I find myself afraid to imagine what might happen next. I haven't been out of this house for more than two hours since last November when I flew to NYC to visit my daughter, son in law and my twin granddaughters. After awhile, all of this confinement will do a number on one's psyche. Chamomile tea, reducing the caffeine and getting more exercise (treadmill) are certainly helpful, but I need a few hours outside of the compound and that's something I'm working on trying to get in place. 

I adore my parents and I'm grateful that I have been able to take care of both of them, but right now this caregiver could use a walk on the beach, an unhurried lunch and just a few hours away from the heavy responsibility. Hopefully in the very near future, I can take a few little breaks to remind myself what the outside world looks like.

Dear Becky - Happy 65th Birthday - Wish You Were Here

Dear Becky,

Happy birthday! I can't believe you'd be sixty-five years old today. You've been gone for forty-two years and wow have you missed a lot of stuff. I couldn't begin to bring you up-to-date, but brace yourself -  you're not only an aunt to my son and daughter, you're a great aunt to three incredible little girls who were born last year. Can you imagine your little sister is now a Nana? How crazy is that?

You would absolutely adore Katie and Justin - I gave Katie your middle name and it suits her. She's happily married to a very tall and kind man named John. They are parents to two absolutely adorable twin daughters who were born on Halloween last year. Katie and John named one of their daughters after our Mom which would please her to no end if she were able to remember it.

Justin married a lovely young lady named Stephanie. Justin has a heart that is roughly the size of Texas, which happens to be where he was born back in 1986. He and Stephanie are very proud parents to a little girl named Evelyn, who is lovely and sometimes she reminds me of your baby pictures. She was born on September 8th last year, just seven weeks before her NYC cousins. You could say 2014 was a very fertile year for our family. 

Our Dad and Mom are now 90 and 91 years old. Can you freaking believe that? They've had an amazing life and are still just as madly in love as they must have been when you were born in 1950. They still do everything together, including snagging dual admissions to Lower Cape Fear Hospice. I've been their full-time caregiver for the past three years and I gotta tell you, it's getting kind of tough right now. Our Mom refers to me as "that woman" a lot of the time and she gives me a run for my money, just as you probably remember me giving her a few gray hairs. Daddy still smokes a pipe, still loves ice cream and plots to escape the house when I leave to run to the store. Much of the time they're still graciously affable but suffice it to say, we're losing serious ground down here.

God I miss you. I'll be honest, given that you died when I was thirteen, there's so much I don't remember about you but there's a few things that I do and I cling to those. You were always the "girly girl" who loved dresses, never had a hair out of place and wore beautiful clothes. Me? I may be fifty-five but I'm still a tomboy, love to work outside and I'm usually disheveled, in sneakers or barefoot and I'm stalked twenty-four hours a day by a small Cairn-Terrier named Sailor and a huge Newfoundland mix named Cleo. I couldn't survive any of this without them. If you arranged for me to meet them at New Hanover Sheriff's Animal Services Unit, I must thank you. They're both "rescues" but they rescue me on a daily basis.

Oh, I cook now. Go figure. I never wanted to be a nurse, but it turns out I've become one. Remember how Mom used to take care of our Granny? Yeah, well, I'm doing that times two. It's a little crazy. Everything is a little crazy down here.

Mom tells me there's a "little girl" hiding in our house and sometimes I wonder if she's thinking of you? Your photos hang in our parents room and they look at them often. I heard my Mom telling one of her hospice nurses about you the other day - she said you were their only daughter and you died a really long time ago. I see Dad looking at old family photos on his computer and quite often he's looking at photos from the 1950's and you're in most of them. They still miss you terribly - we all do.

I'm not at all sure what it's like where you are, but it's a circus down here. Mom still has your hope chest and it's sitting in the foyer of my home and folded neatly inside are some of your things; your graduation robe and the bridesmaid dress you wore in your best friend Nancy Linkous' wedding. Mom still has some of your jewelry and I even managed to keep a couple of trinkets you gave me before you went away.  Years ago Mom made a shadowbox containing your class ring, your charm bracelet, your wedding announcement and a small pennant pin from Welch High School. Oh, and I still have your French Provincial end tables in my living room. I've refinished them and they've held up quite well. 

I gotta tell you, I look at at the sky several times a week, usually after an exasperating encounter with Mom or Dad, and I usually say something glib like, "Wow, you're missing all the fun sister!", or "Thanks a lot!", but really, I'm only teasing. If you're looking down you probably smile a lot. For the most part it's been a pretty good ride but the ride is getting bumpy and winding down and I'm scared a lot of the time. 

I think of you every single day but I become extra sentimental every year on your birthday and, of course, on May 25th. My whole life has been divided into two parts - pre May 25 1973 when everything in my world felt safe and happy and my biggest decisions involved whether to play kickball or go fishing and then post May 25 1973 when you died and nothing was ever the same. Even though I was only thirteen and I didn't understand much about death, having never been around it, it was pretty much the most jarring event of my life. Talk about turning our little world upside down! I know it wasn't your choice either but geesh...that was a really sucky time!

I hope things are well for you up there and obviously the concept of heaven implies that all is wonderful and happy and I genuinely hope it is. I can't tell you when to expect Mom and Dad, but I'm sure they'll be thrilled to see you and I know you'll show them the ropes and just an FYI - Mom's just as bossy as she ever was, but she's definitely softened with age and when she's not railing to go back to West Virginia, she's incredibly sweet and has mellowed a great deal. Daddy - well - I just hope heaven has a smoking section where pipes are allowed because if they don't, I'm not sure he'll stay. Otherwise, he hasn't changed much at all. He's sweet, kind and for the love of God I hope when he transitions to your world that his hearing is restored because he flat out refuses to wear a hearing aid. Other than that, he's a sweetheart. 

Oh, one more thing - thank you for sending Sharon my way. If ever there was an embodiment of you, it's in my best friend and non-biological "sister" Sharon Pate Batts. My gosh, she has been a great pinch hitter for you - she is supportive, kind, loving, compassionate and not a bit shy about straightening me out when I need it, much as I imagine you would do if you were here. I can't imagine getting through the last fourteen years without her and I thank God she's part of my life. Sometimes I'm sure you're literally directing her advice and actions. You would absolutely love her. I know I do.

Hey, if I never told you and, given that I was fairly young when you flew up, me being a newly minted teenager and all, I probably wasn't all that great at expressing how much I loved you but please know, you left a huge impact on my life and even though I can't remember a lot of the details about you, I know I loved you lots. I still do. Sometimes I really do feel you with me and I love those moments. I really hope I see you again (sorry, but not any time soon - I have granddaughters to spoil!), but the first thing I want to do is give you a big huge hug and the second thing I want to do is ask you what in the world were you thinking to leave me in this mess?? 

Becky, I miss you so much it hurts sometimes. Don't worry though, I'm doing the best I can and now that I have hospice, I have some great help with our Mom and Dad. I won't let any of us down. Promise.  I can't say I'm having a wonderful time, but I sure wish you were here.

All my love to you,

Susan

Eldercare - Trying to Maintain Some Sanity!!

This past weekend was one part sweetness, one part sadness and way too many parts straight out of rejected scripts from "The Twilight Zone". Talk about a crazy mixed bag. 

My head is still spinning. I have one patient who can't tell me what year it is, can't hear a word spoken from six inches away and refuses to wear anything that resembles a sound amplifier, but let me close an outside door on my way to run a ten minute errand and he magically gathers the ability to plan an escape.

My other patient is basically immobile. She ventures only from the lift chair in her bedroom to the dining room table with rare jaunts to the back patio. However, every single evening following supper, she begins haranguing my dad that it's time for them to go back home (West Virginia) and goes on to explain how she would rather live ANYWHERE else but here. She vacillates between tears and steely anger. She begs, she demands and when she slowly understands that she's not getting anywhere - she retreats bitterly into her chair. It's at these moments that I can appreciate why my Dad refuses to wear any device that might improve his hearing because he becomes frustrated trying to calm her down. My Dad harbors no desire whatsoever to head to WV and when he asks my Mom where she plans to stay on these visits, my Mom draws a blank as she thinks about all the friends and relatives she was close to and how 99% of them are dead. This does nothing to improve her mood.

This past Saturday was just a really bad circus. After making a super fast trip to pick up Stephanie and Evelyn and run in "The Olive Garden" for a quick bowl of soup. Before leaving the house I'd  arranged my parents' breakfast, newspaper, fruit, coffee and meds AND told them numerous times I had to duck out for about an hour but I would be RIGHT BACK. I came home an hour later to find my Dad demanding to know where in the world I had been and where are the keys to the doors and what is my phone number and why is the side and front doors locked and on and on and on and on...and on.  My mother was much more calm, but when I asked her if she remembered where I told her I was going, she had absolutely no idea and, oh by the way, she wanted to know how Stephanie was and when is she going to have that baby? (I get asked this question several times a day and by my Mom's account, Stephanie has been pregnant for eighteen months even though Evelyn frequently visits and is obviously Justin and Stephanie's baby...obvious to everyone but my Mom. 

After arriving home from my quick errand with Stephanie and Evelyn, I prepped and placed a lovely pot roast in the oven and a short time later, with Steph holding down the fort, I took the opportunity to run to the store and pick up a few essentials and of course, I took Cleo and Sailor with me - they need time out of this nuthouse has much as I do. When I returned home, Stephanie reported that I had barely backed out of the drive way when my parents magically emerged from their room - my mom heading straight for the kitchen, rifling through cabinets and searching for God knows what while my Dad was shaking the side and front doors, frustrated to find them locked and unaware that Stephanie was in the living room. When she walked over to my Dad, he asked her why the doors were locked and where was the key? She explained that I liked to keep them locked for safety and that she didn't have a key (she does, but she wisely pretended that she didn't). He was not happy with her answers. Meanwhile, in the kitchen, Mom told Stephanie that she was going to fix dinner!! (something she hasn't done in three plus years). Stephanie stepped up and told her that I had a roast in the oven and we were all going to have a really nice dinner in a short while. I don't think my Mom really believed her, so Mom just kept pilfering the cabinets. 

Thank God Stephanie was here. It was one of the rare occasions I could get through a store without the feeling of impending doom and fear of total residential destruction. The fact of the matter is that leaving my parents at home, unattended, is the equivalent of leaving two toddlers alone to fend for themselves. It's just not a good idea and it's a recipe for some sort of ghastly disaster. They are helpless. They have just enough cognition to get them into trouble i.e., "oh, a stove - it cooks things...let me turn these knobs and punch some of these buttons on the microwave!", and then mindlessly walking off. It's just not a smart move. 

It's maddening. The agitation and anxiety is becoming more pronounced in both of them and to tell you the truth, it's a little terrifying. I hate it - I hate it for them and I hate it for me.

Last night we had another epic episode of my Mom's "I want to go back to WV NOW!!!!!" show and she said so many things that broke my heart..."I hate it here. I would rather be ANYWHERE than here. I want to leave! Why do we have to stay here with that woman??".  Now, I know...I KNOW in my head that she is truly railing at her lack of ability, agility and she's living in some kind of fantasy where she can cook, clean and do all the millions of things she used to do with grace and ease, but last night, hearing her wails, after spending all day yesterday working in the backyard, I was exhausted, sunburned and just plain tired. I texted my daughter and a close friend - the contents of which I couldn't possibly repeat on this blog, but it did ease my tension and the replies I got back made me laugh, which is why I chose to grace them with my @#$%%^ texts in the first place. 

I love my parents, but wow this stage they're both in makes parenting teenagers look like a spring walk through Central Park. When my daughter called me yesterday evening, she was in the middle of putting tired and fussy twins to bed and had to think about getting dinner going, but listening to the sounds from her house reminded me that in spite of all the madness in this crazy house, life goes on and this will pass. She also wisely and graciously included me in yet another fitbit challenge and God knows I need someplace to spend the energy created by the frustration of getting through these days. 

My friend John sent me back texts that literally made me laugh out loud which is pretty awesome considering he has his own hands full with various irritations and his own set of parents to worry about. 

My dear Stephanie texted me to see how my day had gone and again, she's juggling a demanding job, motherhood and several furry animals to deal with at home. 

I guess that's the secret - we're truly all "in it" up to our eyeballs. Everyday brings a thousand fires to put out and ample opportunities to allow for many a "silent scream" and deep sense of wonder at all the beauty that spring shares with us - green grass, bright blossoms and highly chlorinated pools that begin to clear. Every single day is a combination of the craziness of Van Gogh and the sweet impressionism of Monet...and I guess you have to appreciate both...but try and focus on more on the Monet moments. It's so much more peaceful.

Today is Tuesday and it's the day Patty comes to give showers! Bless her heart and bless Lower Cape Fear Hospice. Just having these helpers in the house gives me infinite amounts of strength and many reasons for hope. 

Last night - my reserves were shot. Empty. Barren. Kaput. Today is a new day - the sun is shining, my hot tea is good and if I'm lucky, it will be at least another hour and a half until my patients get up. I'm looking to restore my peace and get in about 15,000 steps to give a good account of myself.

Hospice - A Nickel For Your Thoughts...

Yesterday, my doorbell rang a few minutes after one o'clock and in walked lovely Olga. Olga is an RN with Lower Cape Fear Hospice and she breezes in with a warm smile, stylish shoes and an air of confidence. When I found out she was from Moscow and had visited St. Petersburg and we realized we shared a deep interest in Russian History and particularly the Romanav Dynasty, we became fast friends. 

Olga introduced herself to my Mom and Dad and proceeded to give them one of the most thorough going overs that would rival that of any physician. She checked blood pressures in BOTH arms, listened to the arterial blood flow in my Mom's neck and knew even before I told her that my mom had carotid artery disease. Olga was a splendid blend of professionalism and kindness and as I watched her examine my parents from head to toe, I felt such comfort having this woman in our home, particularly taking care of two folks who are very precious to me. 

As Olga was giving my Dad a thorough check up, the doorbell rang again and in walked Patty, who is our new Certified Nursing Assistant.  I watched as Olga and Patty exchanged hugs and then proceeded to work together and I realized we have an amazing team (or flock?) of angels. Patty explained she was here to meet my parents and wanted to know about things like personal care, showers, and examine the bathroom to see if everything was in order. When she decided our shower chair was nowhere close to her safety standards, she and Olga put in an order for a shower chair with arms and sturdy legs. 

While these women were discussing my parents' care, the door bell rang yet again and voila! It was a medical supply delivery man bringing in two shiny new rollator walkers, a bed side toilet and Olga and Patty quickly asked him if he had a shower chair on the truck. He did, in fact, but it wasn't the one they wanted so the new one was just delivered a few minutes ago and is quite impressive. 

After Olga's examinations, she and Patty took my parents into the living room with their new walkers and they taught my parents about the hand breaks, the folding seats and how to make full use of their new conveyances. I stepped back and watched and I was so deeply touched by their attitude of caring, compassion, humor and encouragement as they worked at converting my Dad to the idea that his cane was no longer adequate. My Mom was an easy and eager convert - she LOVED that her new walker rolled easily and had a seat to rest on. Dad took a little more convincing but from watching Olga, I could tell she was up to the challenge and knew her way around a stubborn customer.

After a few test "walks", Olga came over to me and told me that she was ordering some cough syrup for my Dad and some allergy medicine for my Mom. I asked her where I should pick these up and she smiled and said FedEx would be delivering them to me today and that the cost was covered by Medicare.

Pinch me.

Patty came over and told me we were now on her Tuesday and Thursday schedule for showers and that she would shave my Dad's ever growing beard. Thank God. He just isn't the beard type and the last time he tried it, he forgot that he had popped the stopper in the sink, left the water running and flooded the bathroom. 

Olga will be coming over again on Friday to do a check up and both women reassured me that if anything came up day or night, help was only a phone call away and they made sure I had the big purple magnet on the fridge with the 24/7 help line. 

No sooner had we said goodbye to Olga and Patty when the doorbell rang again and in walked Kim. Kim is our assigned social worker and she came bearing a different kind of assistance and information. Kim and I sat down at the kitchen table and her queries were for me - "How was I doing, what were my biggest concerns and how did I feel about everything?" 

I took a deep breath and I went on to explain that this was all very new, and that after going it alone for so long, it was going to take a little while to get used to the extra help, but it was a welcome adjustment to make. She was interested in the history of the relationship with my parents, how it came to be that they were living here and she wanted to know how I was coping with being "shut in" with my "shut ins". 

On that note, she told me she was putting in a request for hospice volunteers to come and spend some time with my parents for a few hours a week to give me a breather - a chance to go to the grocery store without feeling as if I was on a wild frenzy to collect everything in my cart before some buzzer rang at the end of twenty minutes. Or perhaps a couple of hours to go to the beach and walk and breathe and unwind. Oh my God how I've needed some "free time" - time away from home without worrying myself sick that people were falling, ashes were popping out of my dad's pipe setting something on fire or someone had left a door open and the dogs had taken off. I honestly can't remember the last time I've been able to be away from this house without all those worries. I also told her I couldn't remember the last time I was in the house alone - and upon further reflection, I realized it has been years. YEARS!!!! I don't even remember what that feels like. 

Kim and I chatted for about an hour and it was so REFRESHING to speak with someone who truly understood what I was talking about and how wickedly crazy the life of a 24/7 caregiver is. I didn't realize how dearly I needed to talk with someone who really "got it". It was a release for me. She gave me some additional information on caregiver resources and she popped in my parents room to introduce herself for a few minutes and then she turned back to me and explained she would be back to visit next week - and I am looking forward to it. It's a wonderful thing to be able to speak to another person who understands the landscape.

After all of our visits were finished, I indulged in a long, lovely phone chat with my dear friend Jayne. We had some catching up to do. Jayne herself went through all of this a year ago with her sister and just last week, she and her husband had to say goodbye to their dear sweet chocolate lab, Mocha. He had developed an age-related condition that progressed faster than anyone had expected and it was a very difficult week for Jayne and her husband. 

During the course of our phone conversation, my Dad came outside and beckoned me inside. He said he had to give me something and it was very important. I told him I would be right in as soon as I was finished with my phone call, but about ten minutes later he came looking for me again, asking me to come inside. I asked Jayne to hold on and followed him into this room. There, on his desk, he had several pennies, nickels, dimes and quarters - all grouped neatly in currency groups and he said, "Here, your Mom and I want you to have this - all of it." It must have been all of about $8 in change. I looked at a piece of paper he was holding in his trembling hand and saw that he was trying to figure out exactly how much money was there. 

"Here - there are fifteen nickels in this group - do you know how much that is?" I thought he was teasing me, but I played along and answered, "seventy five cents". 

"Really?", my Dad earnestly asked? "How much is a nickel worth?". I felt my knees buckle.

My dad who spent his career as an accountant and knew figures inside and out, no longer understood the monetary value of a nickel. As I realized he was sincere and it was very important to him to give me this change, as soon as he calculated just how much it was, my heart broke in a few deep places. I never imagined a day when my Dad wouldn't have the ability to calculate ANYTHING, much less wonder what a nickel was worth. 

After I finished my phone conversation with Jayne, I went back into my parents room and my Dad was still diligently counting pennies, nickels, dimes and quarters. He had a scrap piece of paper in his hand and there were calculations. I glanced down at the numbers he'd scrawled and all of the question marks he'd placed when he couldn't come up with the right answers. 

So many pieces are missing...fading away. The deficits are becoming so much more pronounced and I'm so grateful to have angels like Olga, Patty, Kim and Susan (the weekend RN) to steady all of us as the losses accumulate. 

It's such a long, painful goodbye.