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 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.  

Helpers...Always Look for the Helpers

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

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

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

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

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

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

Dementia is a mean son-of-a-bitch. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dear Becky,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

All my love to you,

Susan

Hospice - A Nickel For Your Thoughts...

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

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

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

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

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

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

Pinch me.

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

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

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

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

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

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

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

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

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

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

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

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

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

It's such a long, painful goodbye.

Hospice Referrals Uncover Daughter Denial

My parents had doctor appointments this past Tuesday. Taking my 90 and 91 year old "twins" to the doctor is what I imagine it feels like to run a "mini-marathon". In addition to the patients, there's a walker, cane and two wobbly folks to navigate into the behemoth of Wilmington Health Associates. Upon entering the waiting room, I seated my parents and went up to the desk to check them in. They both remarked what a lovely building it was and swore they'd never been there before. It is a lovely building but they'd probably been there about 40 or 50 times in the last few years however, according to them, this was their first visit.

In no time at all, we were called back for weights and vitals and then we followed the kind nurse to an examination room where we waited just a few short minutes for Dr. Babiss. She soon appeared with her usual sweet smile and kind manner and greeted all three of us warmly. Mom and Dad smiled but were mostly non communicative, choosing instead to hold each others hand. This wasn't lost on Dr. B and she motioned for me to move closer so that we could chat. She wanted to know how they were doing...really.

I revealed that probably most of the time my mother doesn't really know me and is positive she is visiting from West Virginia, where she firmly believes she still has a home. She rarely moves from the chair in her room and most of the time she seems to be in a daze.  As for my Dad, he's begun to wander, but quite selectively. If I'm home, which I am 99.9% of the time, he stays in their bedroom but if I announce that I must run to the store, he immediately grabs that opportunity to do things like walk out back and head for the pool shed, amble around the front yard or, in the case of this past Monday when I made a mad dash for Harris Teeter to pick up dinner, he'd taken a 100' extension cord from the front porch and had it stretched out in a most interesting configuration right where I usually park. I jumped out of the car and asked him what he was doing? "I'm taking care of this cord - it was rolled up on the front porch," he matter of factly reported. When I asked why, he just shrugged his shoulders. I asked him about his promise to me that he would stay inside with Mom while I was out of the house and he said he had no memory of making such a promise. Oy veh! I might as well been talking to the extension cord he was playing with and twirling around. I grabbed the cord and quickly wound it up and put it in the garage so I could pull the van up to the house. Puzzled but nonplussed, he simply shook his head and toddled inside.

I told Dr. Babiss that the wandering was becoming worse each day and I'd noticed that as the afternoon transitioned into evening, he was exhibiting agitation and restlessness. Door locks are checked dozens of times as he makes an endless loop from the front door to the side door to the sliding glass doors. In fact, he generally doesn't stop this until I physically lead him back to his room and faithfully assure him that the house is secure and locked tighter than a drum. Even then, I don't think he quite believes me.

Dr. Babiss tried to engage both of them in some conversation but it was futile. I attempted to assist by asking Mom to tell Dr. B who had visited us last week. My Mom thought for a minute and then said, "I don't remember". I pulled up a photo on my iPad of my Mom holding my daughter and son in law's twin babies with Katie standing on one side of the chair Mom was sitting in on and me on the other. My mom smiled at the photo but had no recollection whatsoever of the visit or anything connected to it.

...sigh...

After explaining what our lives were like, Dr. Babiss very kindly told me it was time to get some help and she told me she was referring both of them to hospice. She apologized for not having suggested it sooner but there was no doubt in her mind that it was definitely time.

Upon hearing this, hearing that I would be receiving some help, extra hands, readily available resources, I was nothing short of ecstatic. I was thrilled. She finished up the exams by listening to my parents hearts, retaking their blood pressures and warmly patting them on their arms. They returned her smiles. 

When it came time to check out at the desk, thinking we would be setting another 6 month appointment, the woman who takes care of these things explained that as we were being referred to hospice, they would most probably take over my parents' medical care, prescriptions and all that goes with it. It didn't quite register at that moment, but my initial happiness at expecting care assistance developed a tiny crack. I was too busy to dwell on it at that moment as I had to walk with my parents to the lab for a brief bloodletting. 

When I returned home and helped my parents navigate the steps to enter the house, I put their dinner out, made coffee and then went outside to think about all that had taken place. I still felt very pleased that we now had hospice referrals, but what I didn't realize, didn't count on, was the almost imperceptible sinking feeling that was beginning to trickle into my heart. I couldn't identify it, but there was this quiet heaviness that was invading my body.

When I woke up the next morning, the tiny trickle of dread had somehow, overnight, turned into a full on flood and it hit me square between the eyes...actually in the eyes because I was crying and it took my mind a few minutes to catch up with my tear ducts and identify the cause.

Hospice. That word. Initially I didn't tie it to the concept of "final phase". Though it was difficult initially to accept that my Mom didn't seem to know me most of the time, and that my Dad couldn't remember where we lived before we moved to Wilmington or who our neighbors are or where the milk is kept, I'd made my peace with those deficits without even realizing it and apparently I'd just assigned it to aging but not to an end. 

It's sort of like I "knew", but I didn't "know". I went from feeling grateful for incoming help to thinking, Oh My God...this sh*t just got real and it's a double dose of real. Crap - I just wanted help, assistance, a respite, I didn't want to think about death or end stages or continued rapid digression. No, no, no, I just asked for the "help" part. Thinking back to my incredulity of a few hours ago - I can't help but marvel at how brilliantly our minds can construct barriers and vast "mental moats" to keep us from accepting the cold hard facts of life. I mean, honestly, did I think they were going to go on forever and believe Mom and Dad were just drop a few cognitive abilities here and there but still be present and accounted for?

Apparently I did. 

I called an emergency lunch with my dear sweet Sharon and over Italian comfort food at the O.C., she held my hand and walked me through my sadness and helped me make some sense of it. Additionally, she has offered to be with me when hospice comes to meet with us on Friday - I don't often ask for help but I grabbed at her offer because I need another pair of ears in case mine shut off. 

I have no idea what to expect because we're on a new trail and my internal gps must be reconfigured. I'm treading water right now and I can do that until I'm given my coordinates. I'm sure I'll be given some good direction tomorrow afternoon.

In the meantime, we carry on. However, I find myself dropping tears all over the place. My mind is a million different places and I feel just a little disoriented but that's OK. I don't like this part of the program but my good friend Bobbi has told me there will be beautiful parts during this stage and she's never lied to me or lead me astray. She's personally been over this course a few times and I trust her. I am buoyed by so many messages from my social media friends who are reaching out and texting and messaging me courage and strength. It's huge and it steadies me. My Cleo and Sailor seem to intuitively know that we're heading for some heavy weather and they are literally circling ever closer to me. Thank God for my faithful furry family. 

I guess I shouldn't be too shocked - my parents have always made it a point to do EVERYTHING together - so the prospect of dual hospice referrals really shouldn't come as a huge surprise. They are inseparable.

I'm not sure what the road ahead looks like, but I'll find out sooner rather than later and until then, to quote James Taylor, "I know now, love is all that matters in these days...".

We'll be ok.

Reflections From the Sick Bed - I Remember Mama...

This has been a lousy week. Dr. Dewey Bridger warned me that I was cooking a batch of bronchitis but I was so sure I knew better and disregarded his good advice and, while I did get his prescriptions filled, I brought them home and left them unopened for four days. I was sure it was just a rising pollen count and seasonal allergies and I'd just save that antibiotic and super cough syrup for a future date when I was REALLY sick. I saw Dr. B on Thursday, 12 March. By Monday night 16 March, I discovered I was REALLY sick. I can just imagine him shaking his head and rolling his eyes - he's taken care of me for fifteen years and I'm sure he'd not find this surprising at all. I really wish I'd listened to him and these past four days, I've paid for it. Lesson learned? Probably not. 

I've spent most of this week pushing fluids, heating up canned soup and engaging in saline nasal rinses, gargles and lots of Vicks Vaporub - it's been a carnival ride. I didn't have time to come down with this mess because my daughter, son in law and twin granddaughters were scheduled to visit this week and I had carpets to steam, dust to chase, linens to wash and order to restore in high anticipation. When my fever set in Monday Night, I collapsed in bed, but it was a really clean bed and the upstairs of my home has never looked more put together. I decided to spend Tuesday resting since most of the work was taken care of and I was sure I'd be fit as a fiddle by their anticipated arrival on Friday. 

I woke up Wednesday and felt like I'd been knocked down by a wrecking ball (sans Miley Cyrus) but I had a hair appointment and sick or not, I had to have my mop modified so I would at least be able to see - my bangs had grown halfway down my face. I looked more like an Old English Sheepdog. 

On the way to the salon my daughter called to say their flight had been canceled and that she would text me when she knew more about the change in their schedule. Chilling, coughing and shivering through my haircut, I received a text that requested I call her after I was finished; plans had been changed - they could get a flight the next day but it would be routed through Boston, rather than the direct flight they had booked. A connecting flight through a city expecting yet another snowstorm with five month old twins. Ummmmmm, not an inviting prospect. My daughter and her husband decided to put the trip off until Easter week and while I was deeply disappointed at having to wait a few more days to see them, my body begged and pleaded with me to FINALLY get in bed. I finally gave in. My biggest fear was that I would convey my illness to the kids and due to some debris on a runway at JFK airport, I was given a reprieve to recover and I was so grateful because I want to be well and on top of my game when the kids arrive. 

Armed with a 750 ml water bottle, a huge glass of iced tea, a steaming mug of lemon/ginger tea, my cache of antibiotics and bottle of cough syrup, I wearily trudged up the stairs and took to my bed. Except for running downstairs to refill my liquids, make coffee for my parents and see that their meals were prepped (and a quick trip to Smithfields and CVS), I haven't really left my room. For me, that's pretty much unheard of because I can't stand being still but this bronchitis has (literally) sucked the air right out of me. 

I haven't been completely alone, thanks to the faithful loving companionship and concern of Sailor and Cleo. They haven't left my side or my bed. I'm grateful to both of them - once again my "rescue dogs" are rescuing me. 

I've managed to take care of the essentials in terms of taking care of my parents - they haven't missed any doses of meds, pots of coffee or meals, even though they've been eating takeout this past week - it's the best I could do. The funny thing is that each time my Mom has seen me, she says the same thing, "Are you catching a cold? You don't look well.". And for the 78th time I've reported that yes, I went to the doctor last week and I have bronchitis. She remembers this for maybe two minutes. Thursday Night I was summoned downstairs three different times because my Mom had told my Dad she hadn't seen me all day. She had seen me as I delivered meals, meds and checked on her when I'd run downstairs to replenish my fluids or heat up a can of soup, and when I'd walk into her room I'd remind her and then she'd laugh and say, "Oh yes, you, yes, I've seen you...", leaving me to wonder who in the heck she expected to see.

I Remember Mama. Really, I do. I mean, I know she's still here with me physically, but so much of her is already gone. 

I must confess, it's not fun being sick alone. My mother ruined me a long time ago. When I was growing up my mother turned illness into an occasion of care and nurturing and attention that made room service at the Ritz look lackluster and shabby. She'd prepare trays filled with homemade soup or her famous chicken and dumplings and she was always bringing in pots of hot tea. Mom would plump pillows, arrange blankets and run warm baths and to be honest, it was a lot of fun to be sick around Maxine Sturgill Cook. She was so amazing, creative and tireless. In fact, she was so good at it that in elementary school I would often fake illness and request an audience with the nurse so that my Mom would be summoned to come pick me up and lavish me with all of her great attention and treats. She eventually caught onto my scam, but I freely admit that I was never too sad to catch a cold or sore throat. Even if it meant a visit to the doctor, it was worth a little poking and prodding it if it meant I'd get my Mom's five star treatment. 

All of those memories flooded back to me this week and oh my goodness how they made me smile and brought no small measure of tears to my eyes. My Mom was great at a lot of things, but she excelled at spoiling both my Dad and me. 

"Are you catching a cold?" my Mom asked me so many times this week. Yeah Mom, I feel like crap. I need some of your hot soup, your perfect cups of tea, your hot oatmeal, your fried chicken, your mashed potatoes and hot rolls and could you arrange my bed like you used to and fluff the pillows as only you know how and if it's not too much trouble, could I have some ice cream and don't you think you should set up the vaporizer? God, I miss you Mom. I miss you so much it hurts but thank you for all those years you took such great care of me. While age has taken away your ability to do all those things you used to manage with such warmth and love, it can't tarnish my memories and how lucky am I to have those?

What I wouldn't do for another plate of your chicken and dumplings.

I love you, Mom.

T-R-A-N-S-I-T-I-O-N

 T R A N S I T I O N (S)

I thought about starting a new blog about my adventures in caring for my 90 year old father and 91 year old Mom, but it didn't seem necessary. I have neglected my blog for a long time because I've been up to my eyeballs in taking care of "the twins", as I affectionately refer to them, but my posts on Facebook seem to be getting longer and so I feel it's time to get back to my blog.

In the beginning, this blog was about a 40 something year old woman who found sobriety on 11 January 2004, and learning how to live as a responsible, productive citizen. In the time since my blog began, my son and daughter have grown up, married wonderful spouses and made me a grandma in 2014 - adding 3 new beautiful grandbabies to our family - my son and daughter in law brought their beautiful little girl, Evelyn Sophia, into the world on 8 September 2014 and my daughter and son in law chimed in with identical twin daughters in late October. What blessings!!

In September 2012, it became necessary for me to stop working OUTSIDE my home and tend to my parents. Memories were failing and medications were screwed up and mother suddenly gave up cooking. One day, she just didn't do it anymore. My Dad is a great man, but he's useless in the kitchen, possessing no knowledge of how coffeemakers work, how bread becomes toast or how to scramble an egg.

Me? For most of my adult life I had about as much interest in cooking as I did underwater basket weaving. The kitchen was a place I breezed through to grab iced tea, a snack and frankly I took most of my meals out. In September 2012, I became chief cook and bottle washer - because it finally occurred to me that while Smithfields and Pizza Hut are convenient and tasty options, they aren't sustainable in the long-term. 

So my self-taught culinary education began. At first, it was a clumsy, messy and sometimes inedible affair but as with most things, applying time and tenacity and step by step instructions online, I learned how to cook. I must say I've given a pretty good account of myself and as of this writing, no one has incurred any gastrointestinal issues as a result of my culinary offerings (touch wood). In fact, there are some days I find great pleasure in creating dishes and I have learned to look upon this, and so many other things I've been conscripted to take on, as challenges in the "I dare you to try - let's see what you've got" kind of self motivation. 

I've learned a lot of lessons, gained new skills, been made humble and stumbled a few times - but the good news is that I've grown and stretched in more ways than I can count. I'm grateful, but it's not all sunshine and daisies. There are days when I'm sure I'm in my last moments of sanity. There are nights I hit the bed and I'm positive I won't be able to summon the physical and emotional strength to get back up again. Some days I feel as if my head will explode if I hear my dad retell the same stories he's been repeating for the past few years. When upcoming doctor's appointments arrive and I'm tasked with getting both of my parents to Wilmington Health for a visit with Dr. Babiss, I feel as if I'm herding cats - my Mom with her bulky walker and my Dad with his lack of coordination and failure to recognize the building we've visited so many times - asking me if he's ever met "that lady doctor" before. When it's time to dispense my parents' daily meds, my Dad always ALWAYS asks if he's ever taken that pill before and is it for him? He's only been taking that pill for about 20 years and yes, it's for him. We have that same conversation every single day. Every. Single. Day. Not a day goes by that my Dad doesn't see a speck of dust or a leaf on the floor that he doesn't bend over, pipe fully lit in his mouth, and dump hot ashes on whatever it is he's trying to pick up which isn't nearly as noticeable as the trail of sometimes red hot sparks that drop out of his pipe. I remind him daily, please don't bend over with your pipe in your mouth to which he instantly asks me "how come? I won't spill anything!". Ummmm, yeah you do and it's dangerous.

Watching the mental and physical deterioration of my parents is one of the most painful experiences I've ever been exposed to. It's so heart wrenching at times that it almost physically makes my heart feel as if it's breaking. My parents have been blessed - it wasn't until their late 80's that mental deficits began piling up but when those glitches began happening, they have accelerated so that as I write this in late February 2015, there are days that my Mom doesn't really know who I am. She knows my name is "Susan", but I'm not "her" Susan. She doesn't connect the dots. My Dad will look at his great granddaughter and when I ask him who she is and what her relationship is to him, he'll think for a couple of minutes and exclaim, "She's my grand niece!". This from a man who has devoted most of his retired life to genealogy research and has over 15,000 names on his Family Tree Maker. 

But there are those golden moments, and they never fail to catch me by surprise. I will hear my Dad loudly and lovingly exclaim to my Mom, bending close to her face as she sits in her recliner in their room, "I love you, I love you, I love you!!!!" or, "did you know you're prettier today than the day I asked you to marry me?". There are those moments when my Dad comes over to me and gives me a tender hug and says, "Your Mom and I sure do appreciate how you take care of these two old people...". Some mornings I'll walk in the kitchen to get their breakfast started and he will be ever so gently holding the chair for her and easing her into a sitting position with the greatest care imaginable. Some evenings I'll walk by their room and overhear my Dad patiently answer my Mom as she asks him, "When are we going home? How long have we been here? Do my parents know we're living together here? Can we go to West Virginia and see my brothers?". My Dad tenderly tries to bring her into the present, as much as his own memory has a grasp on it, and with kindness tries to give her comfort.

This is an emotional gig I find myself in the middle of and tears come with the territory, but I keep them private and out of view. As a 55 year old adult, I understand perfectly what is happening to my parents from a clinical standpoint, but as the only living offspring of these two, I dearly miss my parents a little more every single day. It sucks to see your two most amazing role models, a pair of the finest people you could ever hope to meet, who have guided you and been incredible examples of integrity and love, falter, fail to recognize you, grapple with the simplest of tasks like opening an e-mail, working a simple jigsaw puzzle or turning off a faucet rather than just walking away and leaving it running. 

This is what I want to use my blog for now. As difficult as so much of this is, and for as much as I sometimes imagine myself far removed from this situation, I know there will come a time when I will want to remember so many of the little things. I want to remind myself that we all did the very best that we could.

I'm not alone by any stretch of the imagination - there are a lot of us baby boomers out there engaged in the same role of caregiver. My situation may be a little unique in that I have no living siblings and I am a full-time caregiver to both parents. I'm outnumbered and on most days, I honestly surprise myself that I've managed another day of keeping it all together, but there are moments I feel desperately tired and I just want a few hours where I'm not in charge of anyone or anything. 

I do have full-time aides who are furry and go by the name of Cleo and Sailor - two rescue dogs that rescue me on a daily basis. They interject "life" into my daily grind. They demand that I go outside and throw a tennis ball and almost every day they insist that I take them on an errand, even if it's nothing more exciting than a trip to CVS or Smithfields or the grocery store. When they see me grab my Doc Martens, coat and car keys, they are front and center and, because I fear my parents may accidentally open an outside door leaving the dogs to take the opportunity to run like the wind, I feel safer taking them along with me on most every outing I make. They are wonderful companions and they also have proven themselves as fantastic therapy dogs to my parents. Their antics, affection and interaction never fail to add laughter and joy to my parents' lives. I couldn't get through my days without Cleo and Sailor. I will forever be in their debt.

While it's true I have no siblings, I do have an amazing posse of the most generous and steadfast friends one could ever hope to meet. My dear sweet Sharon leads the pack - this woman truly makes my life so much easier and is a constant reminder that I am not alone. Sharon was one of the first friends I made when I moved to Wilmington in August 2000. I knew absolutely no one but it didn't take me long to find her. She watched in horror during the early years of our friendship and pulled me out of many of dicey situation, courtesy of my serious relationship with red wine and when it was finally time for me to confront my drinking and admit that I had become powerless, she truly held my hand and helped me believe that I was stronger than I felt. In the years since I popped that cork back in the bottle, as I've grown and regained so much that my drinking took away, she has celebrated my victories and made me believe in myself. For those reasons alone, she's been one of the most pivotal humans in my life but as I've made my way through this journey of caregiving, she's been not only a staunch source of support, but she's done a great deal of the heavy lifting right there with me. In every way except blood, she IS my sister, along with our buddy Anne, and these two women keep me laughing, cry along with me when it's needed and their support gives me courage; when you're taking care of "eldertwins", you need all the courage and stamina you can get your hands on. These women, along with other angels in my life, deliver in spades. I can honestly say that while the mission of caregiving can be a lonely business, I have seldom, if ever, felt truly alone. My friends make that impossible for me and I'm so dearly grateful for each of them. 

Reaching out doesn't come naturally to most of us. However, it does become necessary. I want to be someone who learns to lend Grace as my own friends have so often and generously given Grace to me. Friends both local and far flung have showered me with so much kindness, packages of spirit lifters, cards, teas, sea glass, sailboat pillows, mugs with sayings that make me smile and feel loved, books that share advice for this passage, notes and cards that whisper comfort and joy. I'm so humbled by these gifts. I'm incredibly blessed by these angels who literally light my path and "walk me home". I can't even express how much this love means to me - a gentle envelope or box of strength that, regardless of what it contains, says, "Yes, you can keep going. You'll be fine.". There are so many wonderful people in this world and when you're in the trenches, you notice them as never before. 

I don't know how much I'll be updating this site, but I want to try and keep it current. If you're in the middle of parental caregiving - feel free to reach out to me. If you're not, feel free to reach out to me anyway. I'll do my best to reach back to you.