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.  

...These Are The Days Of Our Lives

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How can I not feel blessed?

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 Arrives - So This is What It Feels Like to Exhale??

Lightning fast. That's the speed with which my focus changed during the first fifteen minutes of my interview with the Lower Cape Fear Hospice. I entered the process feeling sad and maybe even a little disconsolate that both of my parents were about to be admitted as hospice patients. Just a couple of minutes into the one-on-one interview with the hospice admissions nurse I realized we weren't in the club yet.

On paper, Lisa shared that the information she had gleaned from their medical records didn't make my Mom and Dad what one might call a "slam dunk" for the program. I filled in what blanks I could with impressions and facts of their past three years of history as my captive patients, but a lot would depend on the admissions nurses clinical impressions. 

After answering something like 45 minutes worth of questions, it was time for the nurse to, literally, "meet the parents". I escorted Lisa into their room. My Dad was still in the middle of an intense two hour plus nap, so I introduced her to my Mom. Lisa was very engaging and my Mom was gracious and accommodating. She allowed Lisa to take her vitals, various measurements and happily answered her questions. "Miss Maxine, who is this lady?", pointing to me.  

My Mom grinned, hesitated and then confidently stated, "She's my...she's my coworker. We get along great!". That was a new one on me - for months I've just been Susan - not to be confused with her daughter Susan, and sometimes I've been "that girl" and "what's her name". 

It was now my Dad's turn and he was still deep into his nap. I sidled up beside of him on his bed and said, "Daddy, you have company. Someone is here to see you. Wake up." Slowly his eyes fluttered and he looked around and saw the pretty lady smiling at the end of the bed and he worked his way into consciousness. "Hello there" he said as he reached out his hand to grasp hers. 

Daddy agreeably consented to the blood pressure cuff, pulse ox monitor and ankle and upper arm measurements, occasionally looking at me with a bit of a puzzled expression. When Lisa asked him who I was, Daddy hesitated and said..."I think she's my daughter. Whoever she is she spoils us rotten." He answered a few other questions - some of them right and a few of them not so right. 

After about forty minutes of checking over my parents, Lisa thanked them and we headed back into the hall. I searched her eyes for a hint at what she was thinking. She asked if there was a room she could use to go over her findings with the doctor who would make the final decision. I invited her to use my office upstairs. Of course, I pointed out all of the framed photographs of my three granddaughters and she appropriately agreed with me that they were most beautiful babies to grace the earth. (Good job, Lisa!). I then went back downstairs to join my best friend and "executive director of my support and sanity", Sharon. We held our breath, exchanged anxious glances and waited. 

I began hearing the "Jeopardy" theme song humming in my head. Crazy - just two hours earlier I was despondent over the fact that both of my parents were about to be admitted to hospice care and now I was scared out of my mind that they wouldn't qualify. Go figure. It was only 3:00 PM and I'd already been on a mental/emotional rollercoaster of epic highs and terrifying lows. Sharon was perfect; kind and just as concerned as I was, but having her right beside me was the most comfort I could hope for and I dearly appreciated her support.

After about thirty minutes, Lisa came downstairs and we reconvened at the dining room table. Sharon and I were both scanning her face for a hint at the verdict. Lisa pulled out her computer, two folders and a pen - as it turned out after discussing our caseS with the doctor, we were given the green light. 

Insert a gigantic, relieved and genuine "WHEW!". I believe Sharon and I exhaled in unison.

Then came the paperwork - material that Lisa had to explain to us and forms that I had to sign. I had absolutely no idea what all hospice might cover but whatever it was, it would be more than I had and my resources and reserves were running low. Lisa handed me two life preservers and I grabbed them and clung to them for dear life.

My parents' medical care will now be under the auspices of hospice. That means that if someone falls in the middle of the night, I no longer have to figure out how I'm going to go with one to the ER and wrangle the other one with me because neither of my parents can be safely left alone. When I allowed my mind to take that information in, it was only at that moment that I realized what a paralyzing fear that had been for me. Every night I'd go to bed with a hundred or so possible nocturnal terrors playing a vicious game of tag in my mind and at the moment we were officially accepted into hospice, it was as if a giant, powerful and benevolent playground monitor chased those terrorists away and locked the gate so they couldn't get back in to harass me. Call it hyperbole if you like, but that's exactly what it felt like.

With a few signatures, I was to learn that if one or both of my parents experienced dizziness or signs of an impending stroke, or fell on the way to the bathroom, or spiked a temperature out of nowhere, or was suddenly incapacitated, no matter what the time of day or night, all I had to do was call the 24/7 hospice number and they would COME TO US. You have no idea how huge that is.

Durable medical equipment. Ummmmm, yes, my Mom does need a new walker and I've felt for months that my dad's cane was inadequate for his unstable, wobbly gait. With a few keystrokes Lisa ordered us two new walkers - walkers with SEATS! OMG OMG OMG!!!!   Ding, ding, ding, ding - I was beginning to feel that I was the winner of the lightning round of a game show. When she suggested a bedside toilet, I started looking up at the ceiling expecting it would open up with balloons and confetti because I had just been named the GRAND PRIZE WINNER!!!! 

If Lisa would have stopped at "bedside toilet", I would still have felt like the winner of the Powerball, but she went on to inform me that if/when the time came for hospital beds, they would be delivered and guess what? It's covered by Medicare. I looked over at Sharon, who's mouth was open just as mine was and said, "Get out of town.". I also looked to Sharon for confirmation that I was hearing all of this right - I mean, is this for real?

Now, my reaction to these benefits may appear to be over the top but I assure you it is not. Imagine taking complete and total care of a 90 and 91 year old, who happen to be your parents (so these aren't just any Joe and Jane Doe), who are completely dependent upon you for meals, meds, remote control...control, laundry, beverage delivery to keep the fluids coming and the UTI's at bay, medical visits and oh yes, walking, getting up out of chairs and keeping them out of harm's way and eventually arriving at the point where it's no longer safe to leave them alone with any level of confidence for the 20 minutes you dare take to careen through the grocery store aisles in an attempt to gather enough groceries for a meal or two and return home before the inmates take over the asylum. That's a "run on sentence" because it's been a "run on existence" for the past few years.

Let me tell you...offers of brand new walkers, a bedside toilet and the promise of a hospital bed if/when the time comes, not to mention a CNA who will be visiting us to assist with showers and personal care (huge!!)... the prospect of new durable medical equipment, visiting nurses, CNA's, nurse practitioners and a few hours a week of someone "holding down the fort" so that I have the opportunity to take care of things in the outside world without worrying if my house is in the process of being burned down - I promise - you would find yourself squealing with delight.

It's a crazy life where a grand prize of two admission tickets to HOSPICE could be considered a "grand prize" but, trust me, I'm in the middle of a crazy life.

Where do I sign, Lisa? 

...and in a moment that could only be orchestrated by a power much greater than myself, the doorbell rings right in the middle of the meeting and a man hands me the most beautiful vase of daisies and small pink roses; a heartfelt gift from a dear, sweet member of my inner circle who lives in Nantes, France and who has been a steadfast source of support and love for over eighteen years. Michel sent flowers to brighten up an extremely emotional, stressful day. I can think of no better time to be reminded that someone is thinking of you and channeling the best of thoughts than in the middle of hospice admissions. That's pretty amazing. I'm completely blessed.

So yes, the entire process took three hours and throughout the evening I felt my head swimming with all the information I had been given. "Did I hear that right?" and "Did Lisa really say that?", only reconfirmed my gratitude for Sharon's presence, who selflessly donated an entire afternoon, an extra set of ears and questions I didn't think to ask.

Please don't misunderstand...I know we haven't relocated to "326 Easy Street", but I can tell you that we're in a better place. Besides, I know "Easy Street" is a place of transition and one is never afforded the chance to put down roots there. We're all just getting by the best we know how. 

In addition to Sharon and Michel, I felt the presence and comfort of so many of my friends and family sending me positive thoughts and prayers, text messages and phone calls that reminded me of love and support from near and far away.

The cherry on the ice cream sundae appeared after dinner Friday Evening. I heard voices downstairs and as I walked into the living room, there was the ultimate stress-reliever in the form of my granddaughter, Evelyn, along with her Mom and Dad. Hugs and smiles from a seven month old sweetheart soothe the jitters of a long day and she worked her magic. My daughter in law and son offered comfort and we all rejoiced that, as many of my Facebook friends suggested, "Angels are on the way!".

I didn't really understand what all those comments about angels and helpers meant prior to Friday. 

Now, I know.

The Green Mile...

"And I think about all of us, walking our own 'Green Mile'...Sometimes, the 'Green Mile' seems so long..."

To my closest confidants, I sometimes admit to feeling extreme anxiety when I first wake up each morning. I'm afraid of what I'll find. My parents are 90 and 91 and dependent on me for almost everything.

When I was a little girl, I used to live in a state of extreme fear because my Mom and Dad were a good ten years older than my classmates parents. My Mom had me at the age of 35 which, isn't anything close to rare, but certainly qualified them as older than the average age of most of the other parents I knew. I would lie in bed at night, scared that my Mom and Dad would die much sooner than most of those other parents of my classmates and this was a particular fear after 1973, following the sudden, unexpected death of my 23 year old sister, Becky. Her death was followed less than two years later by my 83 year old grandmother who had lived with our family from the time I was in first grade. As far as I could tell, my family members were dropping like flies and my response to this was extreme fear and multiple panic attacks. I lived a very fearful existence, just waiting for someone else near and dear to me to suddenly disappear from my life.

Obviously, this didn't happen - my parents have, in fact, outlived many of my former classmates parents.

I no longer lie in bed and fear the inevitable in the same way I did when I was 10 or 12 or 14 years old, but I know how my own movie ends. Death is non-negotiable for all of us.

When I hear the first stirrings of my Mom's walker in the morning or the clop of my Dad's cane, I'm instantly relieved and then in the very next seconds I gear up for another episode of "Groundhog Day", because frankly, this is exactly what my life is like right now. Every day I answer the same questions about 40 times (no exaggeration) and sometimes I must identify myself. The weather becomes a particularly hot topic because in the span of an hour at the breakfast table, my Mom will ask me, even with the weather on the kitchen television being broadcast in real time, "what's the weather going to be today?". Sometimes I direct her attention to the television set which she'll watch eagerly for maybe 2 minutes and then, as soon as a commercial comes on, she asks me again, and again, and again "what's the weather going to be today? Is it going to snow?".

Cloudy, cold days are the worst. Not only does the pain my Mom experiences in her joints increase as the temperature slides down, but her whole affect is much less amiable and cheery.

Today is the first day of March. I heard my mother remark earlier today that it's "looking like fall". There is no real grasp of time and space for her. I'm not sure if that's true for my Dad because his almost total deafness and inability to carry on a conversation unbroken by "what did you say?" makes small talk an impossibility. I hate speaking in a loud voice and while I made a good go of it the first year and a half, I must confess I no longer do. It becomes very hard. That doesn't stop my Mom - from anywhere in this house one can hear her repeating the same question or comment up to 10 - 15 times, directed at my Dad. Most of the time whatever it is she's saying gets lost in the yelling and given her own abbreviated attention span, more often than not she forgets what her original point was when she began.

Schedules become essential and one tangles with them at a risk. If I serve dinner an hour or so early - say at 4 rather than 5:30 PM,  I'll often hear the click-clack of my mother's walker heading to the kitchen, asking me what we're having for dinner tonight? When I remind her that she ate just a short time earlier, she regards me with a quasi suspicious and embarrassed look. Not quite believing me and embarrassed that I might be right.

Last night I was watching "A River Runs Through It" after I served my parents dinner. About an hour after they had finished, I heard my mother tell (yell) for my Dad to be sure and check the doors. As I was sitting in the living room which is situated right next to their room, I heard my Dad's footsteps and waited for him to "peek" into the living room. I told him all the doors were locked and everything was safe. He gave me a nod and then proceeded to walk to the side door, the door leading to the garage and the sliding glass door in the dining room. I guess he didn't believe me - this is his routine. I smiled to myself and continued watching the movie.

A few minutes later, my Dad appeared again in the living room - "Your mother said she heard some people talking in here and wanted me to check.".

"Dad, it's the television - I'm watching a movie. No one else is here."

He nodded and headed back to their room with the message.

Not fifteen minutes later, my Dad reappeared in the doorway of the living room. "Your Mom keeps saying someone else is in here."

I pretty much gave up watching the movie by this point. I walked with him back to their room and told my mother personally that there is no one in the house but the three of us, as it is most days and nights. I told her I had been watching a movie.

Not ten minutes later, their bedroom door opened yet again - it was at this time I believe I looked over toward Cleo and said, "I'm going to stab my eye with a fork!!".

"Did you lock the doors?"

"Yes Dad - everything is locked up tight."

"Just checking. Your Mom wanted me to make sure," so again he makes the rounds until I seriously find myself unable to sit still and I walk up to him, gently put my hand in his and tell him he's done this already tonight. The house is locked up. No one else is the house. It's time for bed.

Meanwhile, I go outside and make about fifteen revolutions around the pool and I do this for two reasons. To shake off the irritation and the rote quality of this and every evening for the past couple of years, and to drive up the steps on my Fitbit. I accomplish both goals in about twenty minutes.

Every single day is both the same and different. The routine is the same but cognition and mental status seem to degrade just a little more. It's sort of like watching paint dry, but it makes me very sad. The intangible loss, the deficits, will break your heart.

I drink a lot of hot tea in the evenings. I build a fire in the wood stove almost every single night and I have an alarm set on my iPhone set for 7:45 PM so that I can listen to the BBC 4 Shipping Forecast. I pull up the maps on my computer and follow along as I listen to the forecast for the gales that are expected at Trafalgar and Biscay, and then I close my eyes and imagine myself bobbing in the small teak cabin aboard a sailboat, holding a mug of hot, steaming tea, tethered to some marina off the Isle of Man, wondering if I'll be able to cast off my lines and head back out to sea. No matter what I'm doing, I listen to that forecast and I visualize that scene. It's a mental image that gets me through another evening after another day of heavy repetition.

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.