10 July 2016
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.
Next up - I made it to Charlotte!!
19 May 2016
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.
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...
12 August 2015
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.
08 August 2015
|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|
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.
19 July 2015
Friday at 9:00 AM, I made the call to our Lower Cape Fear Hospice Social Worker, Kim. I asked her about the protocol for admitting my parents to respite care. I never imagined making that call. To be honest, I've often thought of myself as fairly indestructible and I couldn't dream of a scenario where I would feel the need for a five day break from taking care of my 91 year old Mom and my 90 year old dad, but this past week, I found myself impatient, snapping at things that wouldn't ordinarily irritate me and weary of never piecing together more than two hours of sleep at a time. I wouldn't say I was near a breaking point, but I will say that I recognized I was drifting a little too close for comfort.
Kim is wonderful. Indeed each member of our dear sweet precious hospice team is nothing short of exceptional. That's not an exaggeration. I couldn't function right now without their skills, support and inestimable compassion. Seriously.
This weekend I am trying to keep our routine as "normal" as possible, quite a hat trick in what constitutes a most abnormal existence. I don't know that I'm performing terribly well. I don't think Mom and Dad remotely suspect that they're about to check in to LCFH in a few days, and I'm glad they don't. Trust me, I'm thinking about it enough for all of us.
You know how in life there are those hairpin points - one second you feel spent and hopeless and then something happens and life makes a 180 degree turn toward the positive and there you go feeling all relieved and maybe even almost smug...and THEN...when you find out you're being granted something you clearly believe you want and need, reality sets in and here comes another 180 degree turn and those knots in your stomach that were just hours earlier untied, reconfigure themselves into different knots and there you are.
And here I am.
I can be so completely neurotic and it's not my best trait but I'm so darn accomplished at it. Sad, really. I'm spending this afternoon trying to imagine what my parents will say when I take them in for five days of in-house care. Will they be profoundly confused? Oh wait, they already are. I can kind of accept that - it's how they spend most every single waking moment of every day. But my main focus, my premier mission is to do everything in my power to ensure they're not afraid, that even through the discombobulated dementia haze, they'll still feel safe, loved and cherished...because they are all that and so much more.
I'm not a prototypical over-achiever, but when it comes to having two of the best parents ever created, I kind of outdid myself. Somehow I managed to spring up from these two incredible souls and I almost feel as if I should come with a tattooed disclaimer that releases them from any responsibility for all the faults I have and mistakes I've made.
A few days ago I was frustrated, weary and pretty much at my wits' end from the rote nature of taking care of my Mom and Dad. I was wondering if my mental and physical stamina could handle what seems like an endless stream of these days; days where I'm asked about a hundred times a day what the weather is going to be like, if I know who those people are in a photograph, how old my granddaughter Evelyn is, and how much does Cleo weigh and where did I get Sailor? Where's Katie? Why is the door locked? How long are we going to stay here? We need to get back home to West Virginia, can you take us?
Today I'm remembering stuff - how many times I've taken my parents to Wilmington Health to see Dr. Babiss, how small they both looked in the examination room, how often I remember seeing my Dad push the lawn mower across the yard, well into his 80's - pipe in his mouth, baseball cap on his head, steadily taking one step after another with a determined, steady gait, knocking out one perfectly measured row after another, meticulous and uniform. I'm thinking how many meals my Mom has prepared in my kitchen, a room I had very little use for or interest in. How many steaming, mouth watering pots of chicken and dumplings has she created in there? I never learned how she did it and it wouldn't matter if I had because my primitive offerings couldn't come close to matching her culinary skills.
Such a history we have. When I was a little girl in elementary school, I used to lay awake at night worried that my parents would die because they were often at least ten years older than most of my friends parents. My Mom was 36 years old when she had me and so many of my buddies had moms and dads who seemed so much younger than mine. I noticed this pretty early on and, being the worrying and anxious kid that I was, I feared they wouldn't survive until I was an adult, when they would attain the ripe old age of 54 (one year younger than I am right now). I wish I could go back and tell my 10 year old angst-ridden self that really, of all the things that might happen in my colorful future, this is the one thing I really didn't need to worry about.
Such irony. I never gave a passing thought that my sister might die - she was young, seemed healthy and such a possibility never crossed my radar. When I was 13 years old, sure enough, my 23 year old sister died out of the blue. It was a horrible time and cranked up my already panic-ridden self into overdrive. It was a profound loss but at 13, I never thought to realize that when the time came, I'd be escorting my parents into super old age. I missed my sister terribly when she died but NOTHING compared to how I miss her presence now.
So on this oppressively hot Sunday Afternoon, I find myself struggling to come up with a script. Depending on the availability of beds at Lower Cape Fear Hospice, my parents may be admitted for five days of respite care tomorrow. I won't know until I get the call in the morning. It may be Tuesday or it could be Wednesday because I don't just have one parent to admit, I have two. I'm told this will be a unique opportunity for LCFH - bringing in a husband and wife at close to the same level of frailty and dementia. I know they'll be well cared for and I have complete faith in everyone employed by our hospice. I'm still nervous.
I need a story-line, a script, some solid, believable but uncomplicated reason to give them as I suddenly interrupt their routine and introduce them to a temporary new one. I've rehearsed what I might tell them about a hundred times. I've even practiced on Sailor and Cleo, explaining how they are going to spend a few days in this beautiful facility because I have to (fill in the blanks). When I pitch my spiel to Sailor, he listens attentively and then licks my nose. Cleo responds with soulful brown eyes and a tilted head and then takes her massive paw and places it on my arm as a cue to rub her belly. I wonder how my parents will react?
I just don't know. I'm anxious. I have no idea what to expect. Katie suggested I tell them I'm taking them to camp - hey, it's summer, that's normal, right? My kids always loved going to NASA Space Camp and were excited and happy on the drive from Ft. Lauderdale to Cape Kennedy.
The LCFH main campus is only about 3 1/2 miles from my house. Should we stop at Brusters for ice cream on the way there?
I guess I'll find out soon enough how they respond and when the phone rings telling me to bring them in, I certainly hope my story feels more believable than it does now because, right now, I haven't settled on one yet.
Later today, I need to surreptitiously sneak into their room and grab some of their clothes, underwear, toothbrushes, and bedroom slippers, a couple of pipes, a pouch of tobacco, a couple of lighters and pack their things in a suitcase. I was told to pack light - that should be a new experience for me - and I don't have to bring any of their medications because hospice has all of their medical information and they will supply all of that, which is a blessing. One less thing to worry about.
Yesterday afternoon I walked into my parents' room and my Mom was moving some pieces of a jigsaw puzzle that she honestly has absolutely no idea how to put together, but still she tries. My dad was asleep on the bed taking one of his marathon naps. Mom looked up at me and asked, "How long are we going to stay here?". The question stopped me in my tracks. I told her I didn't really know, but she'd lived here for nearly fifteen years. She nodded her head and went back to mismatching puzzle pieces.
This is going to be so strange. I can't wait to see how this story comes out. Prayers and good thoughts are welcomed.
...to be continued.
17 July 2015
16 July 2015
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?