The Measure of Our Days - Contributions of a Social Worker

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

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

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

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

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

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

Was I EVER wrong.

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

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

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

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

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

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

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

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

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

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

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

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

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

Recap of Respite Care

My Parents LCFH "Sleeping Arrangements"

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

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

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

Dad, Kitty Cat and Mom

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

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

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

 Mom, Kitty Cat, Daddy and Jane

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

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

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

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

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

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

First Evening Back Home

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

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

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