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.

The Road Less Traveled Delivers Me To Charlotte...

I'm interrupting the timeline for a non-commercial break, and a huge personal break-through.

On Monday Evening of January 11th, 2016, after kissing my Mom goodnight for the evening at Lower Cape Fear Hospice & Life Care Center. I walked out of the building on that chilly January night at about 8:00 PM and I remember looking up in the sky and seeing a shiny crescent moon. I  recall my shock at seeing it dangling up in the sky. My sweet Daddy had died two days earlier in the same building I was exiting, and I had spent all day with Mom on what would be, unbeknownst to me at the time, her last lucid day. I had no idea I'd just had my last interactive conversation with my sweet mother. I'm grateful I didn't know.

I was exhausted, my head was foggy and my heart was broken. I honestly hadn't had time to process my Dad's death. It still seemed completely surreal to me that he could possibly be gone from this earth. When I looked up at the moon as I made my way to the car, I clearly remember wondering how in the world the moon could be shining? I'd lost the most amazing man I ever knew in my life and, frankly, it seemed inconceivable that the moon could rise and I know that sounds strange, but I literally stopped and stared at it for a moment or two wondering how the world could continue to spin without my Dad.

This would turn out to be one of my first lessons in grief. That night I realized that life was crazily determined to keep going on, even if everything in my life was completely turned upside down and my heart was aching from a place so deep I'd never felt anything like it before. Maybe it wasn't an ache as much as it was a heaviness, a deep, drawn out silent scream. But it was also a sign - a moonlit sign that no matter what deep shit we have to trudge through in this life, the world keeps turning and the moon still shines. The sun rises. We breathe. We learn to live again.

I've always had a bit of a panic problem. Driving in particular can sometimes make me a wreck (pun intended). I was diagnosed with panic disorder before there even was a "formal" diagnosis of panic disorder and scored my first panic attack when I was 13 years old, about a month before my sister died. As luck would have it, my first attack occurred on a spring break vacation with my parents and grandmother to Chicago to visit my aunt and uncle. Hyperventilating, palpitations, feeling of impending doom - I ran the full gamut and it scared my Mom to death. She didn't know what in the world was wrong with me but fortunately we had a very astute family doctor who listened and had, himself, a history of dealing with panic disorder and he assured her I wouldn't die from it. In 1994 Zoloft was approved for the treatment of panic disorder and a physician in El Paso, Texas prescribed it for me and it literally changed my life. I was able to do so many things that I'd never been able to do before. That's not to say that the symptoms completely disappeared, but they certainly became much more manageable and I've been on a small dose ever since. It's made things like driving, navigating crowds, flying and just living life much easier and most of the time enjoyable.

After my parents passed away, I was invited by my sweet friends, Jayne and Keith Cannon, to come visit them in Charlotte for a few days. Initially, I honestly couldn't imagine I would ever be at a point where I could see myself driving alone to any point more than an hour away, and the idea of driving to a huge city like Charlotte seemed completely impossible. They say that time heals all wounds and I take exception with that because I don't think time heals the void of losing loved ones. I don't think it's possible to completely "heal" from losing folks we love so much. I think what time does do, is afford us the chance to put one foot in front of the other, allow the searing ache of our losses to eventually recede and makes room for the flow of happy, comforting memories to move toward the front. Time gives us the opportunity to think about rejoining the human race and learn how to live again. After enough time, we can even find ourselves smiling and laughing again. 

When Jayne initially made the invitation, I had to decline because I was at a point where I truly didn't want to leave home. I felt shell-shocked, as if the very foundation of my life had been shaken because, well, it had. Life as I'd known it for the past three and half years was no more, and I had to find my bearings and figure out where and, to some extent, who I was. I'm still working on that part. 

Being a full-time caregiver for several years is a very cloistering experience. The world shrinks, particularly if you can't be away from your home for more than twenty minutes at a time. Even though I was busy taking care of a lot of things and multi-tasking, it was in a very confined space. The world outside of my home became much more distant and there were a few times when I'd go several days without starting my car; I'd find myself in the grocery store and feel as if I must be in another country.

However, time ticked on and when Jayne again invited me to visit, I found myself saying "yes". It wasn't like me to make such a quick decision, but I had spent several weeks searching for jobs, going on interviews, completely cleaning out my garage (huge!!) and my confidence was slowly beginning to resurface. I'd also started dipping into my Dad's diaries, reading entries about how he and my Mom had felt when my Mom's Dad died which was, coincidentally, on January 9th, 1962, fifty-four years to the day before I lost my own Dad. I had no idea until I read that entry. My Dad wrote so poignantly of the pain of that loss, the memories it evoked for him and gave a glowing account of the man my Grandpa Sturgill was, but he also noted that as hard as it is to lose loved ones, the best thing we can do to honor them is to pick up our lives and move forward. Reading those entries, I could hear my Dad's distinctive voice, the cadence of his writing was almost the same as if he was speaking to me. In fact, I know he was.

Another huge sign that this trip was a "go" came courtesy of my amazing neighbors AKA as Cleo and Sailors Godmothers, who were available to sit with my furkids. In fact, they enthusiastically encouraged me to go for it. Cleo and Sailor LOVE Pat and Ginger so that was a huge relief. I've loved my dogs since the day I adopted them from the shelter, but I must confess that I would not have been able to get through the silence of these past six months without these two irascible creatures. Just as they kept me sane during my 3 1/2 years of care-giving, they've been with me every step of the way as I've grappled with the grief. I am devoted to both of them and I know they're devoted to me. Their unconditional brand of love have made these past few months bearable, silly and sometimes funny. They demand I go outside, throw the slobbery tennis ball and take in the air and sunshine. What gifts they are. 

When I set out for Charlotte, after the steering-wheel-gripping fear of crossing the Cape Fear Memorial Bridge which, in my twisted mind, was three times the length of the Golden Gate Bridge and ten times as high, my grip began to relax a little. I had my iTunes cranked up and I began looking around. It had been years since I'd been on any kind of road trip and I began to notice vaguely familiar sights and, along with it, lots of sweet memories. I wore the necklace I have with my parents wedding bands, and I grasped it several times. I had them with me.

When I got to Whiteville, I stopped at a produce stand. My mom would have LOVED that. I stopped and looked around and wound up with peaches, blue

berries, a watermelon and fresh corn to take to Jayne and Keith. I got back on the road and realized I was actually feeling a little more relaxed and comfortable behind the wheel. It wasn't one startling moment, it was gradual. But it happened. Each mile became a little easier. I realized I was heading toward friends who understood very well what this little trip represented for me. I was breaking the ice and through a combination of iced tea, James Taylor songs filling up the silence, every single mile registered on the car odometer was a silent but strong affirmation that life DOES go on. That's a wonderful gift of a realization.

I thought back to that January night and the moon...crazy as it seemed, the moon did rise and I could drive to visit friends. Initially both of those things seemed impossible, but they weren't. It just takes time. Precious, not-to-be-rushed, time.

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...

The Measure of Our Days - Contributions of a Social Worker

I have an extremely tight, close-knit circle of precious family and friends who intimately know and understand what my life at home consists of these days. There's so much of what happens in the day-to-day minutiae that I've never written about, but there are a few folks in my life who are well aware of many of the things that don't make it to my blog entries.

Some of the scenes from this experience are not anything you'd find in a commercial for "A Place For Mom", the local Hallmark Store or a warm and fuzzy Lifetime feature movie. Actually, it's more along the lines of "The Twilight Zone" with a smattering of "Gilligan's Island".

If that analogy sounds completely bizarre and off the charts, it's because I've been on this island a really long time. We're in an inevitably emotional and surreal period these days. Respite care was a wonderful treat for me but it was almost too sweet and, I must be honest, way too brief. It was difficult to imagine living in my home five days without my daily and nightly care-giving duties and, to be perfectly frank, it was difficult to pick up the key chain I wear around my neck and resume the duties of pharmacist, head (and only) cook and meal planner, grounds keeper, safety inspector, recreation director, television remote control expert (a role I step into at least 20 times a day), laundress and, ummmmm, everything else.

When I checked my Mom and Dad into the capable hands of Lower Cape Fear Hospice and Life Care Center for five whole nights, it seemed like such a huge break - five whole nights of just being in charge of myself, playing with Cleo and Sailor, casually walking in and out of my home without reflexively reaching for one of the many keys I wear around my neck to lock whatever door I transited, striking out for lunch or the grocery store without the pressure of a twenty minute window to grab whatever I needed and get back home before my Dad wakes up from his nap. It was a crazy, carefree, liberating time and just when I was starting to get in the groove it was Saturday and guess what? It was time to pick up my twins and take over the helm again.

I know I write glowingly about every member of our LCFH&LCC Team and for good reason - they're all exceptional individuals and they make my life so much easier than it was prior to my parents' admission into hospice, but the member of our team whose focus is slanted more to the caregiver is our Social Worker Kim. Her contribution to our family and particularly me is inestimable. Truly.

Early in our admission process, after meeting everyone assigned to my parents' care, I actually wondered why we would even be assigned a Social Worker. I mean, I've got this, right? I'd been taking total care of both parents for over three plus years and, while I sorely needed the additional nursing care and was positively thrilled to have a CNA come in and take over showers and shaving, I didn't really understand what we could possibly glean from having a Social Worker visit. I wasn't going to turn it down if this was part of the protocol but it seemed like a waste of her time and ours. I just figured fine, I'll sit and chat with Kim, who appeared to be perfectly pleasant.  What the heck, I'm sure some "other" families would find the input of a Social Worker useful but really, why?

Was I EVER wrong.

Where do I begin? You know all of those niggling thoughts, fears and questions that pop up when you're stressed and under a Matterhorn of pressure? Yeah...the stuff you try and tuck into the deep recesses of your mind and work really hard to avoid thinking about because you simply have no answers? After awhile you find yourself working so hard to tamp down all of that unwelcome mental static that it begins to wear you down. It becomes exhausting fending off the fears; you begin to think you may well be going crazy because surely no one else on the face of earth ever felt the way you do. Haven't we all been there? Some of us have been "there" so often we have reserved seating. I know I do.

After a couple of visits with Kim, I found myself impressed with the way she'd handled some of my initial, albeit largely superficial questions and she certainly seemed to have quite a mastery of resources available to hospice patients and caregivers. After a couple more visits, I began to feel a genuine rapport with Kim and suddenly rather than just "accepting" her visits, I began looking forward to them.

Once again, I'm reminded that hospice has a LOT more experience in this arena than I do and clearly, like so many other caregivers before me, I discovered that hospice realized I had a need long before I did.

Care-giving is, by its very nature, an isolating business. Mom and Dad don't really have the capability to hold a conversation for more than about five minutes and I guarantee that four of those minutes will be taken up by my Mom asking about the weather. And yes, I talk to Cleo and Sailor and they reply with tilted heads, warm snuggles and many invitations to reduce "my" stress by giving them belly rubs and ear scratches. They're just super generous like that and I couldn't survive without either one of them but when I try to engage them in conversation, they tend to nod off. Honestly, I can't blame them.

Thank God for Kim! Talking with her is a huge outlet for me. I can vent, ask questions, explain things that have come up, discuss old fears, new worries and even speculate about what my life might look like someday. I can't begin to express what an hour of talking with our LCFH Social Worker does for me. Not only does she give me a safe place to ask tough questions, reveal scary scenarios my mind conjures up or, sometimes, do nothing more than compassionately listen as I express with a wide variety of colorful adjectives that THIS IS HARD AND I'M REALLY TIRED!! 

With all of my ranting,venting and "tales from the dark side of my brain", I don't seem, thus far anyway, to have rattled her. And perhaps THAT is the kindest gift I receive from Kim's visits - she validates my feelings, reassures me that I'm not crazy (yet) and maybe most comforting of all, reminds me that other folks in my position have felt and voiced the same feelings and fears I find myself grappling with every single day. That, my friends, is huge. Sometimes the most precious thing you can discover is that there are other people in the same freaking, creaky, leaky boat you're in. A huge measure of peace comes from knowing this. 

There is some kind of pixie dust comfort in realizing, or being reminded, that we are not a-l-o-n-e. God, that's just comforting, isn't it? It's almost like inside of all of us, no matter what we're juggling, handling or trying to manage, as long as we know that others have been where we currently find ourselves, some sort of cosmic strength instantly opens up - at least for me it does. Wow...someone has been right (or at least close to) where I am and lived through it. I can't tell you how many rough spots that concept gets me through. It's not magical thinking. I think of it as "strengthen thinking" (way better than "stinkin' thinkin'"). 

I remember back in late-April, during one of my second or third visit with Kim, when I didn't quite understand what her role in our lives would turn out to be. She asked me how I was feeling? Rather than give my usual polite but oh-so-dishonest reply of, "I'm just fine, thank you!", I paused for a minute or so, took a deep breath and said, "Like I've inhabited the role of Bill Murray in "Groundhog Day" and the DVR is stuck on repeat...repeat...repeat. I think I'm going out of my mind."  To her extreme credit and remarkable professionalism, she didn't flinch, but she did smile. From that moment on, I felt a connection which sustains me to this day. 

This whole experience has taught me so much but these past few months, in particular, I've come to truly understand how essential it is to keep it real; to be as honest as I possibly can with my family, my friends and particularly myself (hardest of all!). When I need help, I'm learning how to reach out. If someone asks me to do something that I can't fit into my pretty full retinue of daily chores - as much as I REALLY want to say yes, I've learned to say no. If I'm feeling extremely exhausted and spent, I now try and keep things as simple as possible and grab some rest, and when I feel my stress levels inch up, I spend some (guilt-free) time in the pool, watch a few episodes of "The Andy Griffith Show" or sit quietly in a corner and pour my focus on a particularly competitive "Words With Friends" match. I've learned to practice these positive coping strategies much more successfully thanks to Kim's positive direction and influence. I also know that being the stressed-out, weary human that I am, I have to keep practicing these things. 

Mercifully, my parents seem to be at a stage where they no longer even notice their shrinking sense of reality. I'm grateful that they don't. My dad is now sleeping several extra hours a day and my Mom seems perfectly content to sit in her chair and push buttons on her remote control. The big huge focus for her seems to seriously be the weather. Period. Their appetites are slowly decreasing and actually they no longer really engage in too much conversation with each other and that's understandable - my Dad is now pretty much deaf and my Mom seems to be tired of trying to make him hear her. Breakfast, which for so long was the biggest production of their day, no longer holds any appeal for them. Where they used to take great delight in mixing several brands of cereal and all manner of frozen fruit, they now slowly walk to the table and wait to be served. One morning a couple of weeks ago I realized I had no fruit in the freezer which would previously have been a very serious omission, didn't even register a comment. Eating seems to have become rote for them and it they both eat like birds. I haven't heard either of them say they were hungry for several weeks. Olga reassures me this is to be expected and normal for this stage, but it's sad just the same.

Through all of these mounting deficits and reductions, the slow trickle of "mourning" continues and it's extremely painful to watch bits and pieces of my parents disappearing right before my eyes. It can't remotely be labeled as "tragic" because they've lived long, productive lives and shared a deep and profound bond but hey, they're my parents. I try and keep all of this in perspective and most of the time, I'm reasonably sure I'm keeping it within the lines but there are moments when some moment or memory will sneak up and the next thing I know my eyes begin leaking.

It's tough, bizarre and sometimes it's funny. I cry, I laugh, I shake my head and take another step forward. 

Thank God for all of those people in this boat with me.  

Recap of Respite Care

My Parents LCFH "Sleeping Arrangements"

If you follow me on Facebook, you no doubt already know that we all survived our five glorious days of Respite Care. Lower Cape Fear Hospice once again exceeded my expectations in more ways than I can begin to recount. 

My parents were treated as if they were the parents of every member of the LCFH team who cared for them and really, can you ask for more than that?

When I went to pick Mom and Dad up at the appointed time, I wasn't quite sure what to expect but I need not have worried. When I walked into their room, it was apparent they were happy, quite at ease and being tended to with the warmth and compassion that is so deeply ingrained in every facet of care that Lower Cape Fear Hospice generously provides. We experience this every single week as we are visited by our CNA Patti, Nurse Olga and Social Worker Kim. As it turns out, LCFH also has a beautiful contingent of folks who deliver inpatient care with all the kindness we've been exposed to in our out patient experience. 

Dad, Kitty Cat and Mom

My first thought is...how do you adequately thank people for treating your family as if they were their own? Not only did they take care of my parents but, by extension, our hospice took care of me. When I asked for updates, I received them. When I was feeling tense and wondered if taking advantage of respite care was the right decision, our outpatient team firmly (but gently!) reminded me that it was the wise thing to do. In every way I can possibly recount, it was an exceptional experience for the three of us and I am profoundly grateful for every single healthcare worker, administration employee and the vast network of volunteers who touched my parents' lives.

On that first day of admission, when it was time for me to leave Mom and Dad at the care center, I gave them both big hugs and kisses, walked out into the corridor with  CNA "Kitty Cat" and Nurse Jane, and proceeded to cry my eyes out. Seriously, I was a mess. I had no idea all of this emotion was welling up inside of me but walking out of their room it hit me like a ton of bricks and clearly Kitty Cat and Jane saw this emotional tsunami coming and they both enveloped me in the most comforting embrace. Even though I'd only met these ladies fifteen minutes prior, they extended such compassion, gave me courage and allowed me to feel the gambit of emotions that overtook me. In fact, Kitty Cat walked me down the long corridors to the front door, reminding me to take it easy on myself in the next five days, to breathe, to rest, to sleep and to find some joy. It was as if she knew every concern and stress even before I could articulate it, and she graced me with solace. I will never ever forget her or that moment. She gave me permission to fall apart and then she held my hand while I put myself back together again. 

During my parents' week of respite, they made many new friends. Though their lack of short and long-term memory doesn't permit them to remember names, it was obvious they had experienced a wonderful week. On my first evening "home alone", I received a Facebook message from a woman with whom I share a mutual friend. She introduced herself and explained that she was a hospice volunteer and visited the various LCFH Care Center campuses, sharing her musical talent in the form of playing the folk harp. She then asked me if I would like for her to visit my parents. I was stunned. Talk about reaching out! Of course, I told Carole that I was sure my parents would love a visit with her, as they both love music. A couple of days later, I received another message from Carole telling me about her visit with Mom and Dad and how, upon entering their room and seeing the two hospital beds pushed together, she KNEW she had found them. As she told me about her visit and how much they both enjoyed it, how she even took requests from them and played "Country Roads", I read her words through teary eyes and a wide smile. There are so many kind and generous people in this world who must share some close lineage to angels. Receiving these messages from Carole warmed my heart and touched my soul. I hope someday to meet Carole and thank her personally for this huge gift. 

 Mom, Kitty Cat, Daddy and Jane

There were others, too. Nancy, another LCFH employee, called me during my parents' stay to give me a real status update and in doing so, she enabled me to relax and enjoy the rest of my "time off". She told me about an LCFH volunteer named "Mio", who struck up a remarkable friendship with my parents...so much so that she visited them two days in a row. As I  understand it, Mio is an artist and Mom and Dad found an instant connection with her. Once again, I don't "know" Mio, but I hope I meet this woman someday so that I can thank her for sharing her time and heart with my "twins". 

In another display of going "above and beyond the call of duty", our precious outpatient nurse, Olga, called me during our respite week, encouraging me to relax and take advantage of my time off. In fact, I found out about a week later that Olga had visited Mom and Dad at the Care Center, which is just another example of the quality of care and compassion that we've been exposed to since their admission in April. Even with her busy schedule of other patients to see, along with her own life outside of work, taking care of her family, Olga found the time to stop by and visit Mom and Dad. This clearly illustrates a theory I have that the folks who are employed by LCFH are truly "called" to do what they do. There's no other explanation because these folks do so much more than simply perform duties as stipulated in their job description. Each member of our team is something of an "overachiever" when it comes to care and I suspect their hearts are extra large. 

Our Social Worker Kim is also vital source of strength for me personally. Kim is my "lifeline" and I swear no matter how crazy my days and weeks might be, an hour spent with her is pure therapy for me. Kim is a great listener - in her role as our Social Worker, she is the part of LCFH who ministers to the caregiver, in addition to checking in on the psycho-social health of the actual patients. Kim's visits give me a chance to vent, to express my fears, worries and concerns. In addition to a being the most sturdy, non-judgmental "sounding board" imaginable, she offers me resources, helps me figure out the crazy logistics of the complicated work of being a primary caregiver to two parents and she shares insights. Kim gives me the golden gift of understanding, validating my feelings, reminding me I'm not crazy (yet) and as with every LCFH professional who visits our home, she begins and ends each visit with a warm hug. I can't tell you how welcome those hugs are because, whatever else it is, care-giving is a notoriously lonely business. 

In other words, it required an orchestrated effort by a lot of professionals to make my Mom and Dad's respite week a lovely success. In fact, it requires a great deal of work by a good many folks to make any transition from home care to inpatient care a smooth experience. What's strikes me as nothing short of miraculous is that there are so many people who make this possible, who pave the way for the rest of us every single day. It's kind of easy to forget all that's required - the medications, meal schedules, personal care (baths, showers, etc.,), and activities that soothe the soul in the form of music, volunteers and staff visits who engage the mind and warm the heart. It's easy to forget all of the components because our hospice team members, both outpatient and inpatient, make it look so uncluttered and seamless that we don't see how much hard work and collaboration is truly required. It isn't magic. It isn't smoke and mirrors. It is love and commitment, and it emanates from the very heart of Lower Cape Fear Hospice. It's a staff who gives great consideration to the needs of their patients, both physical and emotional, who created a room where my parents could be together, even as they slept. 

I don't know the statistics, but I would say it's a rare event where a husband and wife are admitted to hospice, and to respite care, on the very same day. Rather than treat my parents as a double work load, they were welcomed as cherished guests, tended to as family and discharged as loved ones. As I lead Mom and Dad down the long corridors, Jane, Kitty Cat and so many others stepped out of their routine to embrace them, expressing how much they enjoyed having them and inviting them to come back soon in such a sincere and endearing tone that I found my eyes leaking just as they did when I admitted them five days earlier. You know how you can tell when people are simply following a script, saying what's expected because it's their job and sticking to the company line as outlined in some corporate handbook? There is none of that at Lower Cape Fear Hospice. Mom and Dad left wrapped in a cloak of genuine affection. That brand of caring isn't simply rare...it's priceless. 

When we pulled into my driveway after saying our goodbyes, my dad had no real idea where he was. He wasn't even sure where he'd been, but he said he had a really good time. My Mom, a bit more cognizant (at times), reported she'd had a wonderful time visiting with all of her old friends and it was "so good to catch up with everyone!". It took my dad the better part of a couple of days to understand that he was home and it took Mom no time at all to explain that, while she was glad to be home, she really missed her friends. 

First Evening Back Home

I guess you could say my parents "week at summer camp" went better than expected. As for me, I wish I'd stressed less and relaxed more, but it was a learning experience for all three of us. We're now back in our "pre-respite" routine of meds, meals, locked doors, and bed times but thankfully we still have our LCFH "home team" lighting our way. Visits from Nurse Olga, CNA Patti and Social Worker Kim remind me feel that I'm not managing this alone...not by a long-shot. 

I always wished, particularly in later years, that I had a few siblings to lighten the load and tag team parental care responsibilities and I still envy families where each adult child is doing his or her part but thanks to LCFH, I no longer feel all alone. 

Right now all I can do is be thankful and deeply appreciative for all of the superb care we've been given these past few months but someday, I really hope to be in a position to give back some of the gifts that have been given to us. I don't ever want to forget all of the support and kindness we've enjoyed and what a positive difference it's meant to all three of us. I hope at some future date, I'm given the opportunity to pay it forward.

"Don't Cry Because it's Over...

This past week, we lost a dear sweet family friend. Perl Tipper passed away Wednesday, 4 March. She was probably the last of my parents friends from the old days when they all worked together in Kopperston, West Virginia. Perl was a best friend to both my mother and father and they all worked together in the "company store". They knew her before she met the man she would marry and go onto raise six kids; one of those kids lives right here in Wilmington, North Carolina and is also a good friend - Christy Register. Perl came down several times a year to visit Christy and her family and we always looked forward to it because it meant Perl would visit us, too.

How to describe Perl - well, she was simply one of the most spry, engaging and witty women I've ever met in my life. My own history of "knowing" Perl is brief compared to my parents relationship with her, but oh how much better my life is for meeting her and tapping into her sparkling personality. 

She was tiny, extremely creative and talented and behaved much younger than her 92 years. I loved her hugs. Our last visit with her was this past June and I made a bit of a party out of it, fetching Smithfields chicken and lots of coffee and iced tea.  I sat on the patio after serving these three crazy "kids" and smiled as I listened to the reminiscing, the sharing of memories and the genuine laughter that wafted through the house. It was always a special time when Perl was in the house and I loved how these three good friends had renewed their connections through the 70 plus years they had known and loved each other.

When Perl visited us this past June, she asked me several times for a photograph and I didn't really understand why. In fact, when I didn't produce it, she had her daughter Christy text me to please send her a photo. I sent a snapshot that was taken at my daughter and son in law's rehearsal dinner in NYC. I didn't think much more about it. A few days later when Perl came over to join my parents for dinner, she presented me with a portrait she had painted - I was stunned. I had no inkling that this was why she wanted the photo. It turns out that as she was spending a couple of weeks visiting Christy, she wasn't one to sit idly by doing nothing - so she painted me! I can't tell you how precious this portrait is to me - how much I cherish it. 

I served my parents coffee this "morning" and by morning I mean 12:30 PM - since the time moved forward an hour overnight I knew they'd be extra late waking up. The sunshine was warm and I took my mother's hand and lead her out to the patio table where I had her coffee waiting. The sky was crystal blue and the trees look as if they are budding right before our eyes. Mom smiled in the warm sunshine and then looked at me and said, "Did you know my friend Perl? She died...". Over the course of the hour that we sat outside in the sunshine, my mother said this to me at least fifteen times. "Yes Mom, I know. We're going to miss her aren't we?". 

"She was my best friend. I knew her before she was married. We used to have so much fun working together."

I patted her hand and I tried to imagine what a huge loss this was to my parents because, quite frankly, she was one of the last of their old friends still alive. It must be deeply painful.

Last night as I was getting ready to make a speedy run for Food Lion, I overheard my Mom and Dad chatting in their room. "Barbe, what are we going to do about Christmas this year? I want to go home."

After repeating her question enough times that he actually heard it, he said, "Well, honey, I'll let you know in December - that's ten months away."

"I want to go home."

There was nothing I could pop in and say. I just listened. My mother's thoughts are scattered and she's not got a firm grasp of seasons or time, but it broke my heart. Right now I'm glad her attention span is brief and her thoughts are fleeting. It would be too sad to imagine otherwise. Everything she knew and all of the things she could do are long gone. Sometimes I wonder how they can possibly deal with it on those rare occasions of clarity. 

Perl visited us a week before Christmas 2013 and again, I served dinner for these three close friends. As I was getting ready to lay out the food I noticed they were all holding hands and my Dad was about to say grace, but what I noticed even more was that they continued to hold hands for several minutes after the prayer. 

Holding hands seems to be the very best way to get through these later years. In fact, when the Star News did a story on adult children taking care of aging parents in January 2014, this photo was on the front page of the Sunday Newspaper that day. It's so emblematic of their relationship.

My parents have always been warm, demonstrative people who never shied away from hugs and they've turned hand-holding into a natural part of their daily routine. I do the best that I can to make sure they are well fed, meds are dispensed as prescribed and I get their television back on several times a day because my mother LOVES to push buttons on the remote which frequently results in a blank screen. However, the most potent and essential secret to growing old, from my "up close and personal" vantage point, seems to be hand holding several times a day. There are so many lessons I learn, but this simple act of reaching out and holding onto each other is the most powerful mood elevator imaginable. Advil eases the arthritic pain, Lisinopril keeps the blood pressure stable and a small 50 mg dose of Zoloft may do something to stabilize the mood, but from where I stand, holding hands is powerful, preciously addictive and induces peace. The side effects of this act are quite amazing. I can't recommend it enough.

"Do you know my friend Perl Tipper?"

"Yes Mom, and we're all going to miss her so very much."

Godspeed Perl - thank you for sharing your life, your infectious laugh and your talent with us. We will always smile as we remember you with love and great affection. We will "cry because it's over, but we're all certainly smiling because YOU happened.