12 August 2015
I have an extremely tight, close-knit circle of precious family and friends who intimately know and understand what my life at home consists of these days. There's so much of what happens in the day-to-day minutiae that I've never written about, but there are a few folks in my life who are well aware of many of the things that don't make it to my blog entries.
Some of the scenes from this experience are not anything you'd find in a commercial for "A Place For Mom", the local Hallmark Store or a warm and fuzzy Lifetime feature movie. Actually, it's more along the lines of "The Twilight Zone" with a smattering of "Gilligan's Island".
If that analogy sounds completely bizarre and off the charts, it's because I've been on this island a really long time. We're in an inevitably emotional and surreal period these days. Respite care was a wonderful treat for me but it was almost too sweet and, I must be honest, way too brief. It was difficult to imagine living in my home five days without my daily and nightly care-giving duties and, to be perfectly frank, it was difficult to pick up the key chain I wear around my neck and resume the duties of pharmacist, head (and only) cook and meal planner, grounds keeper, safety inspector, recreation director, television remote control expert (a role I step into at least 20 times a day), laundress and, ummmmm, everything else.
When I checked my Mom and Dad into the capable hands of Lower Cape Fear Hospice and Life Care Center for five whole nights, it seemed like such a huge break - five whole nights of just being in charge of myself, playing with Cleo and Sailor, casually walking in and out of my home without reflexively reaching for one of the many keys I wear around my neck to lock whatever door I transited, striking out for lunch or the grocery store without the pressure of a twenty minute window to grab whatever I needed and get back home before my Dad wakes up from his nap. It was a crazy, carefree, liberating time and just when I was starting to get in the groove it was Saturday and guess what? It was time to pick up my twins and take over the helm again.
I know I write glowingly about every member of our LCFH&LCC Team and for good reason - they're all exceptional individuals and they make my life so much easier than it was prior to my parents' admission into hospice, but the member of our team whose focus is slanted more to the caregiver is our Social Worker Kim. Her contribution to our family and particularly me is inestimable. Truly.
Early in our admission process, after meeting everyone assigned to my parents' care, I actually wondered why we would even be assigned a Social Worker. I mean, I've got this, right? I'd been taking total care of both parents for over three plus years and, while I sorely needed the additional nursing care and was positively thrilled to have a CNA come in and take over showers and shaving, I didn't really understand what we could possibly glean from having a Social Worker visit. I wasn't going to turn it down if this was part of the protocol but it seemed like a waste of her time and ours. I just figured fine, I'll sit and chat with Kim, who appeared to be perfectly pleasant. What the heck, I'm sure some "other" families would find the input of a Social Worker useful but really, why?
Was I EVER wrong.
Where do I begin? You know all of those niggling thoughts, fears and questions that pop up when you're stressed and under a Matterhorn of pressure? Yeah...the stuff you try and tuck into the deep recesses of your mind and work really hard to avoid thinking about because you simply have no answers? After awhile you find yourself working so hard to tamp down all of that unwelcome mental static that it begins to wear you down. It becomes exhausting fending off the fears; you begin to think you may well be going crazy because surely no one else on the face of earth ever felt the way you do. Haven't we all been there? Some of us have been "there" so often we have reserved seating. I know I do.
After a couple of visits with Kim, I found myself impressed with the way she'd handled some of my initial, albeit largely superficial questions and she certainly seemed to have quite a mastery of resources available to hospice patients and caregivers. After a couple more visits, I began to feel a genuine rapport with Kim and suddenly rather than just "accepting" her visits, I began looking forward to them.
Once again, I'm reminded that hospice has a LOT more experience in this arena than I do and clearly, like so many other caregivers before me, I discovered that hospice realized I had a need long before I did.
Care-giving is, by its very nature, an isolating business. Mom and Dad don't really have the capability to hold a conversation for more than about five minutes and I guarantee that four of those minutes will be taken up by my Mom asking about the weather. And yes, I talk to Cleo and Sailor and they reply with tilted heads, warm snuggles and many invitations to reduce "my" stress by giving them belly rubs and ear scratches. They're just super generous like that and I couldn't survive without either one of them but when I try to engage them in conversation, they tend to nod off. Honestly, I can't blame them.
Thank God for Kim! Talking with her is a huge outlet for me. I can vent, ask questions, explain things that have come up, discuss old fears, new worries and even speculate about what my life might look like someday. I can't begin to express what an hour of talking with our LCFH Social Worker does for me. Not only does she give me a safe place to ask tough questions, reveal scary scenarios my mind conjures up or, sometimes, do nothing more than compassionately listen as I express with a wide variety of colorful adjectives that THIS IS HARD AND I'M REALLY TIRED!!
With all of my ranting,venting and "tales from the dark side of my brain", I don't seem, thus far anyway, to have rattled her. And perhaps THAT is the kindest gift I receive from Kim's visits - she validates my feelings, reassures me that I'm not crazy (yet) and maybe most comforting of all, reminds me that other folks in my position have felt and voiced the same feelings and fears I find myself grappling with every single day. That, my friends, is huge. Sometimes the most precious thing you can discover is that there are other people in the same freaking, creaky, leaky boat you're in. A huge measure of peace comes from knowing this.
There is some kind of pixie dust comfort in realizing, or being reminded, that we are not a-l-o-n-e. God, that's just comforting, isn't it? It's almost like inside of all of us, no matter what we're juggling, handling or trying to manage, as long as we know that others have been where we currently find ourselves, some sort of cosmic strength instantly opens up - at least for me it does. Wow...someone has been right (or at least close to) where I am and lived through it. I can't tell you how many rough spots that concept gets me through. It's not magical thinking. I think of it as "strengthen thinking" (way better than "stinkin' thinkin'").
I remember back in late-April, during one of my second or third visit with Kim, when I didn't quite understand what her role in our lives would turn out to be. She asked me how I was feeling? Rather than give my usual polite but oh-so-dishonest reply of, "I'm just fine, thank you!", I paused for a minute or so, took a deep breath and said, "Like I've inhabited the role of Bill Murray in "Groundhog Day" and the DVR is stuck on repeat...repeat...repeat. I think I'm going out of my mind." To her extreme credit and remarkable professionalism, she didn't flinch, but she did smile. From that moment on, I felt a connection which sustains me to this day.
This whole experience has taught me so much but these past few months, in particular, I've come to truly understand how essential it is to keep it real; to be as honest as I possibly can with my family, my friends and particularly myself (hardest of all!). When I need help, I'm learning how to reach out. If someone asks me to do something that I can't fit into my pretty full retinue of daily chores - as much as I REALLY want to say yes, I've learned to say no. If I'm feeling extremely exhausted and spent, I now try and keep things as simple as possible and grab some rest, and when I feel my stress levels inch up, I spend some (guilt-free) time in the pool, watch a few episodes of "The Andy Griffith Show" or sit quietly in a corner and pour my focus on a particularly competitive "Words With Friends" match. I've learned to practice these positive coping strategies much more successfully thanks to Kim's positive direction and influence. I also know that being the stressed-out, weary human that I am, I have to keep practicing these things.
Mercifully, my parents seem to be at a stage where they no longer even notice their shrinking sense of reality. I'm grateful that they don't. My dad is now sleeping several extra hours a day and my Mom seems perfectly content to sit in her chair and push buttons on her remote control. The big huge focus for her seems to seriously be the weather. Period. Their appetites are slowly decreasing and actually they no longer really engage in too much conversation with each other and that's understandable - my Dad is now pretty much deaf and my Mom seems to be tired of trying to make him hear her. Breakfast, which for so long was the biggest production of their day, no longer holds any appeal for them. Where they used to take great delight in mixing several brands of cereal and all manner of frozen fruit, they now slowly walk to the table and wait to be served. One morning a couple of weeks ago I realized I had no fruit in the freezer which would previously have been a very serious omission, didn't even register a comment. Eating seems to have become rote for them and it they both eat like birds. I haven't heard either of them say they were hungry for several weeks. Olga reassures me this is to be expected and normal for this stage, but it's sad just the same.
Through all of these mounting deficits and reductions, the slow trickle of "mourning" continues and it's extremely painful to watch bits and pieces of my parents disappearing right before my eyes. It can't remotely be labeled as "tragic" because they've lived long, productive lives and shared a deep and profound bond but hey, they're my parents. I try and keep all of this in perspective and most of the time, I'm reasonably sure I'm keeping it within the lines but there are moments when some moment or memory will sneak up and the next thing I know my eyes begin leaking.
It's tough, bizarre and sometimes it's funny. I cry, I laugh, I shake my head and take another step forward.
Thank God for all of those people in this boat with me.
08 August 2015
|My Parents LCFH "Sleeping Arrangements"|
If you follow me on Facebook, you no doubt already know that we all survived our five glorious days of Respite Care. Lower Cape Fear Hospice once again exceeded my expectations in more ways than I can begin to recount.
My parents were treated as if they were the parents of every member of the LCFH team who cared for them and really, can you ask for more than that?
When I went to pick Mom and Dad up at the appointed time, I wasn't quite sure what to expect but I need not have worried. When I walked into their room, it was apparent they were happy, quite at ease and being tended to with the warmth and compassion that is so deeply ingrained in every facet of care that Lower Cape Fear Hospice generously provides. We experience this every single week as we are visited by our CNA Patti, Nurse Olga and Social Worker Kim. As it turns out, LCFH also has a beautiful contingent of folks who deliver inpatient care with all the kindness we've been exposed to in our out patient experience.
|Dad, Kitty Cat and Mom|
On that first day of admission, when it was time for me to leave Mom and Dad at the care center, I gave them both big hugs and kisses, walked out into the corridor with CNA "Kitty Cat" and Nurse Jane, and proceeded to cry my eyes out. Seriously, I was a mess. I had no idea all of this emotion was welling up inside of me but walking out of their room it hit me like a ton of bricks and clearly Kitty Cat and Jane saw this emotional tsunami coming and they both enveloped me in the most comforting embrace. Even though I'd only met these ladies fifteen minutes prior, they extended such compassion, gave me courage and allowed me to feel the gambit of emotions that overtook me. In fact, Kitty Cat walked me down the long corridors to the front door, reminding me to take it easy on myself in the next five days, to breathe, to rest, to sleep and to find some joy. It was as if she knew every concern and stress even before I could articulate it, and she graced me with solace. I will never ever forget her or that moment. She gave me permission to fall apart and then she held my hand while I put myself back together again.
During my parents' week of respite, they made many new friends. Though their lack of short and long-term memory doesn't permit them to remember names, it was obvious they had experienced a wonderful week. On my first evening "home alone", I received a Facebook message from a woman with whom I share a mutual friend. She introduced herself and explained that she was a hospice volunteer and visited the various LCFH Care Center campuses, sharing her musical talent in the form of playing the folk harp. She then asked me if I would like for her to visit my parents. I was stunned. Talk about reaching out! Of course, I told Carole that I was sure my parents would love a visit with her, as they both love music. A couple of days later, I received another message from Carole telling me about her visit with Mom and Dad and how, upon entering their room and seeing the two hospital beds pushed together, she KNEW she had found them. As she told me about her visit and how much they both enjoyed it, how she even took requests from them and played "Country Roads", I read her words through teary eyes and a wide smile. There are so many kind and generous people in this world who must share some close lineage to angels. Receiving these messages from Carole warmed my heart and touched my soul. I hope someday to meet Carole and thank her personally for this huge gift.
|Mom, Kitty Cat, Daddy and Jane|
There were others, too. Nancy, another LCFH employee, called me during my parents' stay to give me a real status update and in doing so, she enabled me to relax and enjoy the rest of my "time off". She told me about an LCFH volunteer named "Mio", who struck up a remarkable friendship with my parents...so much so that she visited them two days in a row. As I understand it, Mio is an artist and Mom and Dad found an instant connection with her. Once again, I don't "know" Mio, but I hope I meet this woman someday so that I can thank her for sharing her time and heart with my "twins".
In another display of going "above and beyond the call of duty", our precious outpatient nurse, Olga, called me during our respite week, encouraging me to relax and take advantage of my time off. In fact, I found out about a week later that Olga had visited Mom and Dad at the Care Center, which is just another example of the quality of care and compassion that we've been exposed to since their admission in April. Even with her busy schedule of other patients to see, along with her own life outside of work, taking care of her family, Olga found the time to stop by and visit Mom and Dad. This clearly illustrates a theory I have that the folks who are employed by LCFH are truly "called" to do what they do. There's no other explanation because these folks do so much more than simply perform duties as stipulated in their job description. Each member of our team is something of an "overachiever" when it comes to care and I suspect their hearts are extra large.
Our Social Worker Kim is also vital source of strength for me personally. Kim is my "lifeline" and I swear no matter how crazy my days and weeks might be, an hour spent with her is pure therapy for me. Kim is a great listener - in her role as our Social Worker, she is the part of LCFH who ministers to the caregiver, in addition to checking in on the psycho-social health of the actual patients. Kim's visits give me a chance to vent, to express my fears, worries and concerns. In addition to a being the most sturdy, non-judgmental "sounding board" imaginable, she offers me resources, helps me figure out the crazy logistics of the complicated work of being a primary caregiver to two parents and she shares insights. Kim gives me the golden gift of understanding, validating my feelings, reminding me I'm not crazy (yet) and as with every LCFH professional who visits our home, she begins and ends each visit with a warm hug. I can't tell you how welcome those hugs are because, whatever else it is, care-giving is a notoriously lonely business.
In other words, it required an orchestrated effort by a lot of professionals to make my Mom and Dad's respite week a lovely success. In fact, it requires a great deal of work by a good many folks to make any transition from home care to inpatient care a smooth experience. What's strikes me as nothing short of miraculous is that there are so many people who make this possible, who pave the way for the rest of us every single day. It's kind of easy to forget all that's required - the medications, meal schedules, personal care (baths, showers, etc.,), and activities that soothe the soul in the form of music, volunteers and staff visits who engage the mind and warm the heart. It's easy to forget all of the components because our hospice team members, both outpatient and inpatient, make it look so uncluttered and seamless that we don't see how much hard work and collaboration is truly required. It isn't magic. It isn't smoke and mirrors. It is love and commitment, and it emanates from the very heart of Lower Cape Fear Hospice. It's a staff who gives great consideration to the needs of their patients, both physical and emotional, who created a room where my parents could be together, even as they slept.
I don't know the statistics, but I would say it's a rare event where a husband and wife are admitted to hospice, and to respite care, on the very same day. Rather than treat my parents as a double work load, they were welcomed as cherished guests, tended to as family and discharged as loved ones. As I lead Mom and Dad down the long corridors, Jane, Kitty Cat and so many others stepped out of their routine to embrace them, expressing how much they enjoyed having them and inviting them to come back soon in such a sincere and endearing tone that I found my eyes leaking just as they did when I admitted them five days earlier. You know how you can tell when people are simply following a script, saying what's expected because it's their job and sticking to the company line as outlined in some corporate handbook? There is none of that at Lower Cape Fear Hospice. Mom and Dad left wrapped in a cloak of genuine affection. That brand of caring isn't simply rare...it's priceless.
When we pulled into my driveway after saying our goodbyes, my dad had no real idea where he was. He wasn't even sure where he'd been, but he said he had a really good time. My Mom, a bit more cognizant (at times), reported she'd had a wonderful time visiting with all of her old friends and it was "so good to catch up with everyone!". It took my dad the better part of a couple of days to understand that he was home and it took Mom no time at all to explain that, while she was glad to be home, she really missed her friends.
|First Evening Back Home|
I guess you could say my parents "week at summer camp" went better than expected. As for me, I wish I'd stressed less and relaxed more, but it was a learning experience for all three of us. We're now back in our "pre-respite" routine of meds, meals, locked doors, and bed times but thankfully we still have our LCFH "home team" lighting our way. Visits from Nurse Olga, CNA Patti and Social Worker Kim remind me feel that I'm not managing this alone...not by a long-shot.
I always wished, particularly in later years, that I had a few siblings to lighten the load and tag team parental care responsibilities and I still envy families where each adult child is doing his or her part but thanks to LCFH, I no longer feel all alone.
Right now all I can do is be thankful and deeply appreciative for all of the superb care we've been given these past few months but someday, I really hope to be in a position to give back some of the gifts that have been given to us. I don't ever want to forget all of the support and kindness we've enjoyed and what a positive difference it's meant to all three of us. I hope at some future date, I'm given the opportunity to pay it forward.
19 July 2015
Friday at 9:00 AM, I made the call to our Lower Cape Fear Hospice Social Worker, Kim. I asked her about the protocol for admitting my parents to respite care. I never imagined making that call. To be honest, I've often thought of myself as fairly indestructible and I couldn't dream of a scenario where I would feel the need for a five day break from taking care of my 91 year old Mom and my 90 year old dad, but this past week, I found myself impatient, snapping at things that wouldn't ordinarily irritate me and weary of never piecing together more than two hours of sleep at a time. I wouldn't say I was near a breaking point, but I will say that I recognized I was drifting a little too close for comfort.
Kim is wonderful. Indeed each member of our dear sweet precious hospice team is nothing short of exceptional. That's not an exaggeration. I couldn't function right now without their skills, support and inestimable compassion. Seriously.
This weekend I am trying to keep our routine as "normal" as possible, quite a hat trick in what constitutes a most abnormal existence. I don't know that I'm performing terribly well. I don't think Mom and Dad remotely suspect that they're about to check in to LCFH in a few days, and I'm glad they don't. Trust me, I'm thinking about it enough for all of us.
You know how in life there are those hairpin points - one second you feel spent and hopeless and then something happens and life makes a 180 degree turn toward the positive and there you go feeling all relieved and maybe even almost smug...and THEN...when you find out you're being granted something you clearly believe you want and need, reality sets in and here comes another 180 degree turn and those knots in your stomach that were just hours earlier untied, reconfigure themselves into different knots and there you are.
And here I am.
I can be so completely neurotic and it's not my best trait but I'm so darn accomplished at it. Sad, really. I'm spending this afternoon trying to imagine what my parents will say when I take them in for five days of in-house care. Will they be profoundly confused? Oh wait, they already are. I can kind of accept that - it's how they spend most every single waking moment of every day. But my main focus, my premier mission is to do everything in my power to ensure they're not afraid, that even through the discombobulated dementia haze, they'll still feel safe, loved and cherished...because they are all that and so much more.
I'm not a prototypical over-achiever, but when it comes to having two of the best parents ever created, I kind of outdid myself. Somehow I managed to spring up from these two incredible souls and I almost feel as if I should come with a tattooed disclaimer that releases them from any responsibility for all the faults I have and mistakes I've made.
A few days ago I was frustrated, weary and pretty much at my wits' end from the rote nature of taking care of my Mom and Dad. I was wondering if my mental and physical stamina could handle what seems like an endless stream of these days; days where I'm asked about a hundred times a day what the weather is going to be like, if I know who those people are in a photograph, how old my granddaughter Evelyn is, and how much does Cleo weigh and where did I get Sailor? Where's Katie? Why is the door locked? How long are we going to stay here? We need to get back home to West Virginia, can you take us?
Today I'm remembering stuff - how many times I've taken my parents to Wilmington Health to see Dr. Babiss, how small they both looked in the examination room, how often I remember seeing my Dad push the lawn mower across the yard, well into his 80's - pipe in his mouth, baseball cap on his head, steadily taking one step after another with a determined, steady gait, knocking out one perfectly measured row after another, meticulous and uniform. I'm thinking how many meals my Mom has prepared in my kitchen, a room I had very little use for or interest in. How many steaming, mouth watering pots of chicken and dumplings has she created in there? I never learned how she did it and it wouldn't matter if I had because my primitive offerings couldn't come close to matching her culinary skills.
Such a history we have. When I was a little girl in elementary school, I used to lay awake at night worried that my parents would die because they were often at least ten years older than most of my friends parents. My Mom was 36 years old when she had me and so many of my buddies had moms and dads who seemed so much younger than mine. I noticed this pretty early on and, being the worrying and anxious kid that I was, I feared they wouldn't survive until I was an adult, when they would attain the ripe old age of 54 (one year younger than I am right now). I wish I could go back and tell my 10 year old angst-ridden self that really, of all the things that might happen in my colorful future, this is the one thing I really didn't need to worry about.
Such irony. I never gave a passing thought that my sister might die - she was young, seemed healthy and such a possibility never crossed my radar. When I was 13 years old, sure enough, my 23 year old sister died out of the blue. It was a horrible time and cranked up my already panic-ridden self into overdrive. It was a profound loss but at 13, I never thought to realize that when the time came, I'd be escorting my parents into super old age. I missed my sister terribly when she died but NOTHING compared to how I miss her presence now.
So on this oppressively hot Sunday Afternoon, I find myself struggling to come up with a script. Depending on the availability of beds at Lower Cape Fear Hospice, my parents may be admitted for five days of respite care tomorrow. I won't know until I get the call in the morning. It may be Tuesday or it could be Wednesday because I don't just have one parent to admit, I have two. I'm told this will be a unique opportunity for LCFH - bringing in a husband and wife at close to the same level of frailty and dementia. I know they'll be well cared for and I have complete faith in everyone employed by our hospice. I'm still nervous.
I need a story-line, a script, some solid, believable but uncomplicated reason to give them as I suddenly interrupt their routine and introduce them to a temporary new one. I've rehearsed what I might tell them about a hundred times. I've even practiced on Sailor and Cleo, explaining how they are going to spend a few days in this beautiful facility because I have to (fill in the blanks). When I pitch my spiel to Sailor, he listens attentively and then licks my nose. Cleo responds with soulful brown eyes and a tilted head and then takes her massive paw and places it on my arm as a cue to rub her belly. I wonder how my parents will react?
I just don't know. I'm anxious. I have no idea what to expect. Katie suggested I tell them I'm taking them to camp - hey, it's summer, that's normal, right? My kids always loved going to NASA Space Camp and were excited and happy on the drive from Ft. Lauderdale to Cape Kennedy.
The LCFH main campus is only about 3 1/2 miles from my house. Should we stop at Brusters for ice cream on the way there?
I guess I'll find out soon enough how they respond and when the phone rings telling me to bring them in, I certainly hope my story feels more believable than it does now because, right now, I haven't settled on one yet.
Later today, I need to surreptitiously sneak into their room and grab some of their clothes, underwear, toothbrushes, and bedroom slippers, a couple of pipes, a pouch of tobacco, a couple of lighters and pack their things in a suitcase. I was told to pack light - that should be a new experience for me - and I don't have to bring any of their medications because hospice has all of their medical information and they will supply all of that, which is a blessing. One less thing to worry about.
Yesterday afternoon I walked into my parents' room and my Mom was moving some pieces of a jigsaw puzzle that she honestly has absolutely no idea how to put together, but still she tries. My dad was asleep on the bed taking one of his marathon naps. Mom looked up at me and asked, "How long are we going to stay here?". The question stopped me in my tracks. I told her I didn't really know, but she'd lived here for nearly fifteen years. She nodded her head and went back to mismatching puzzle pieces.
This is going to be so strange. I can't wait to see how this story comes out. Prayers and good thoughts are welcomed.
...to be continued.
17 July 2015
16 July 2015
I've been busy in a kind of "time warp" situation. I've started blog entries at least twenty times and then something has happened and scrambled my brain to the point I haven't been sure if I'm believing what I'm seeing or seeing what I'm believing. Sound confusing? Welcome to my world.
The past few days I've been doing my 24/7 care-giving gig to both of my parents and then retreating during "quiet" moments up to my room where I have been intensely engaged in about twenty different "words with friends" games while streaming "The Andy Griffith Show" on Netflix and trying my level best to forget what I am hyper-actively engaged in. It works, somewhat, and for the few moments of sanity it affords me, I'm deeply grateful.
In the past month, my parents have lost so much cognitive ground that I know I probably sport a "deer in the headlights" expression on my face because even though I'm witnessing every terrifying intonation of Mom and Dad's profound dementia, it still startles the living heck out of me.
This is where I must first and foremost tip my hat off to Lower Cape Fear Hospice because if our team of angels were not holding my hand during this phase of deterioration, I wouldn't be able to function or face any of this. Our incredible nurse Olga, CNA's Patti and Teresa and my own personal angel, Social Worker Kim, help me find the courage to face each new day and whatever terrors it may hold. They dole out showers, shaves, physical check ups and active listening with a compassion that never fails to give me more courage for whatever the next day holds.
I'm not going to even pretend I'm not exhausted because I am. Physically, mentally and emotionally. Summer has always been my most favorite time of year but this summer will go down has one of the most challenging seasons of my life. I have to work really hard to summon the joy that summer has always afforded me because watching two of my favorite people fade away right before my eyes is heartbreaking. I don't know how I'll look back on this period in my life, but for right now, it's painful.
And yet, there have been some sparkling moments that have shown up unexpectedly, completely out of the darkness. My dad has always been a big fan of Chrysler Minivans. With all due respect to Chrysler and minivans, I've never been a fan. When we finally convinced my dad a few years ago to give up his car keys, he titled his 2006 minivan, with all of 30,000 miles on it, over to me. I didn't celebrate because it was never a car I cared to own but for insurance purposes, I titled it in my name and tried to pretend I was driving something else. This past May my buddy John, sensing my disdain for the white mess, suggested I drive a car he had restored to practically "show room" new. It's a 2001 Lincoln Town Car and yes, it's HUGE, but it drives like a dream and the back seat comfortably accommodates my 110 pound Newfoundland mix Cleo and the front seat is a favorite spot for the more diminutive Cairn Terrier mix Sailor. To be honest, nervous driver that I am, I feel safer navigating a big car than a small one and so I started driving the Lincoln and felt quite comfortable and safe on the wild, tourist filled roads of Wilmington. I must admit the leather seats, impressive cooling system and bells and whistles are a lot more inviting than the minivan and I actually enjoy driving around in it. Hey, I could always be an Uber driver in this car because it's a lot like the transportation I take from La Guardia into Manhattan when I visit Katie, John and those adorable twins.
After a few weeks, John made me a proposition; he offered to trade me the Lincoln for the minivan - straight up, declaring he could strip the van and use it as a work vehicle and I would no longer have to look at it in my driveway. I was stunned and excited...and then, as we got closer to making the trade official, I was blindsided by a wave of guilt and sentimentality. Every time I would go to clean out my belongings from the van, I'd feel a wave of imagined retribution, as if I was somehow betraying my Dad by removing the last vehicle he would ever drive. I'd rifle around the compartments of the van and see the legal pad he faithfully kept of the mileage, gas refills, trips he made and recorded in his shaky handwriting, run across his ziplock bag of pipe cleaners, toothpicks and matches and before I could go any further, I felt wracked with guilt. The miserable minivan may have been titled in my name, but I could feel my dad's presence all over it. I became static - unable to move forward with the trade. John most kindly allowed my delays at heading over to the DMV because I believe he sensed I was involved in some kind of internal tug of war. He didn't push me and for that I'm grateful.
One evening, about three weeks ago, I caught my Dad looking over the padlocked back gate and when I walked over to him, I asked him what he was doing?
"Who does that car belong to?", he asked. I explained it was our friend John's and that he'd left it here for me to test drive. I then asked him if he'd like to see inside of it, to which he eagerly agreed.
I took my Dad's hand and walked him through to the house and unlocked the side door and slowly helped him into the passenger side of the Lincoln.
"Wow, this is fancy. This is a really nice car!"
I asked him if he'd like to take a little ride in it and he said yes. I belted him in and backed out of the driveway and drove around a few streets in the neighborhood. He "ooohhhhhed" and "ahhhhhhed" over the smooth ride, the thick comfortable seats and unblemished interior. "This is a really nice car, Susan! And he's letting you drive this for free?".
I screwed up my courage and said, "Daddy, John said he'd like to trade me this car for the minivan. What do you think about that?"
Dad studied for a minute and then asked, "How much would you need to pay him extra?" I told him John wanted to do a straight up trade - wouldn't cost me a dime. Dad was incredulous. "You mean you wouldn't have to pay anything extra?" I assured him that I wouldn't - it would just be a matter of paperwork and changing insurance. He was quiet for a few seconds and then leaned back and said, "Well, you better go call him right now and tell him YES before he changes his mind!" I asked him again if he thought this was a good deal and he said, "Oh yes, call him right now and tell him yes!".
I can't even tell you what my dad's response meant to me. It was like some really heavy chains broke and I suddenly felt free to get rid of that stupid minivan. In fact, I didn't truly realize how encumbered I'd felt until he said those words.
We pulled back into the driveway, and I helped Dad out of the car and walked with him around the Lincoln, raised the hood and showed him the motor, not that either one of us could truly identify many of the parts, but it looked impressive. I had him sit in the backseat which is a lot like sitting on a huge comfy leather sofa and he just shook his head and said, "And John wants to make an even trade?". I reconfirmed that he did. "Go call that man and tell him yes!".
I walked daddy back in the house and he went in his room and I heard him regale my Mom with his little adventure in that nice big car. She had no idea we'd left the driveway but she doesn't tend to move out of her chair after dinner so I knew we would be safe taking a quick tour. Twenty minutes later, he was still bragging on his ride and I had to smile as I heard him tell her how nice it was.
I climbed the stairs and called my buddy John and told him I would meet him at the DMV any day the next week to make it official. I then explained how I'd become paralyzed by getting rid of the last car my dad would ever drive and apologized for taking so long to complete the trade. As usual, John was understanding and kind and said, "Not a problem at all. Glad it worked out.". What a friend.
I know that might sound crazy, such a love/hate relationship with my dad's car and finding it hard to let go, but the truth is that in the last few months I've lost so much of the true essence of my Mom and Dad that I couldn't control, that when it came time to proactively make a change, I found myself stumbling and dragging my feet.
Letting go is a tough business. In these long, hot days of the summer of 2015, I'm losing so much that is preciously near and dear to me. Most days I don't believe my parents really know that I'm their daughter. Oh, they are polite and affable, and they know I'm the source of their meals, meds and I'm definitely the "go to" person who straightens out the television when my Mom pushes the wrong button on the remote some twenty times a day, and the expert on dialing the phone on the rare occasions my dad tries to make a call to his sister in West Virginia, but as for truly knowing I'm their daughter, I don't honestly believe they have a clue. I'm "Susan", but not their "Susan". I think that's because their "Susan" is something like 8 years old and engages in dangerous pursuits such as swimming in the pool past dusk and walking outside with the dogs in the backyard after dark. My Mom has identified me as her coworker, good friend, neighbor and nice lady but as for believing I'm their kid, no way.
It is what it is. I'm grateful for what I've had and those angels among us (great friends, family and of course Lower Cape Fear Hospice) who are helping all three of us as we make our way through this huge transition.
One of the biggest challenges is fear. Ambiguity. I know what the end game will be, but it's stressful to wonder how that will play out and what it will look like. Those thoughts can really mess with your head and it's a lot of work keeping fear at bay. I'll be honest, I don't really want to see anyone die - who does? The expectation of the imminence of death casts a thick, smothering pall but I do my best to swat it away. Some days I'm better at it than other days and again, remembering to take it all one day at a time is the best defense.
There's a gazillion lessons in this situation and I'm sure a lot of them will not be known until this is finished. Until then...I take advantage of every chance I get to grab Cleo and Sailor, crank up the Lincoln, turn on the iPod to the B-52's "Love Shack" and smile as we run what I call "micro-errands" if for no other reason to grab an iced tea at Smithfields.
And then, there's this. As sad as it is to watch two people you love lose their abilities, faculties and all that goes with it, I'm grateful that I am allowed the privilege of watching my ten and a half month old granddaughter, Evelyn, learn how to feed herself, grab for my face, pull my hair and burrow her head into my arms when she's ready for a nap. How amazing is that? I'm living in the middle of a crazy circle of life. I'm the Nana to three incredibly precious granddaughters all under the age of one who are learning their way through the first year of their lives and it's just beyond imaginable. As nuts as my present circumstances sometimes are, I have to remind myself that life is springing up all around me in these three precious gifts. Evelyn dazzles me, charms me and makes me laugh often. My hearts sometimes feels as if it will burst from the miracle that she is. I check Instagram several times a day for photos of my NYC granddaughters and before I go to sleep at night, I look at those images and no matter what else might have gone down in my day, I am entranced by these new lives. All three little girls are coming into their own.
I had to giggle as I woke up this morning - after spending the day with Evelyn yesterday, she'd left her little toy "Minion" in my bed so this morning I woke up to the "ha ha" of this tiny toy...an amusing reminder that life DOES go on and goes on well.
How can I not feel blessed?
04 June 2015
"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.
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.
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.
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.
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.
Thank you...so inadequate but deeply heartfelt. Thank you for propping me up. I'd be in a million crazy pieces without my angels.
20 May 2015
We're sliding backward at an alarming rate. It feels like being in one of those "House of Mirrors" you find at carnivals - I think they're called "fun houses" but trust me, there is nothing "fun" going on in this house.
Our latest escapade began last Friday Morning. I was upstairs brushing my teeth and I mistakenly thought my parents were eating breakfast in the kitchen. My phone rang and it was my neighbor Pat, who lives across the street, telling me that my Dad was in the driveway and walking with a very unsteady gait and she was afraid he was going to fall. I FLEW down the stairs (toothpaste still in my mouth) and bolted out the side door to find my Dad kind of walking in circles and sporting a huge gash on his right forearm with blood dripping all over his shirt. I took his hand and lead him inside. He was terribly disoriented and unhappy to have been "caught".
My Mom had been on the back deck leaning over the railing, trying to yell at him to come inside but of course he didn't hear her. He can't hear anything. He had no idea she was risking a fall trying to get his attention. Thank God my neighbor spotted him when she did.
When I brought him inside and sat him down at the table, I tried to explain that he shouldn't have been outside. He became indignant. I brought his cereal bowl over to him and got my mom seated and then I made a cup of tea and went outside on the patio to calm myself down before addressing what had just happened. When I went back inside, I sat down at the table across from him and I tried to explain (loudly so he could hear) that it's very dangerous for him to be outside like that alone and then I pointed to his arm and told him it could have been much worse than a gash. Uncharacteristically my Dad threw down his spoon, looked at my Mom and in the harshest tone I've ever heard him use, he said, "I don't have to take this! I'm going back to my room.".
He didn't go back to his room. I took a photo of his injury and texted our Lower Cape Fear Hospice nurse, Olga, who immediately texted me back that she would be over soon and check out the damage and take care of it. Thank God for hospice.
I gave my Dad something to calm him down and reduce his agitation and then I gently hugged him and told him that we were so upset because we love him so much and want to keep him safe. He softened a little and when Olga arrived about an hour later, he was much more civil...but completely unrepentant. When Olga asked him how this happened he said he had no idea. She carefully cleaned the wound, applied ointment and then wrapped it in several layers of gauze to protect it from further damage. After she left my Dad asked me who she was. I was taken aback because Olga had been here just one day before to give my parents a check up, but my Dad claimed he'd never seen her before in his life.
The rest of the weekend kind of went downhill from there. I had a lot of work to do outside and my friend John popped over to very generously donate his time and skills by pressure washing the deck around the pool and then my very long driveway. What a friend! Meanwhile I went back and forth between trying to help John and putting out skirmishes in the house.
On Sunday, my parents started the day out calm but things got weird as the day progressed. When I was growing up, my Mom always talked about how she'd wanted to be a nurse so she took Sunday to practice. She unwrapped the beautiful dressing Olga had applied not once, not twice and not even three times but a whopping FOUR TIMES. Fortunately Olga left me with some supplies because I was scheduled to change it Monday Morning but my Mom had taken the carefully covered dressing and applied toilet paper and scotch tape - right on the gash. You can imagine how much fun that was for my Dad as I had to take it off and redress the wound with sterile bandages. It was as if my Mom was on some kind of weird loop where each time I would rewrap his arm, she would wait an hour or so and then take it off and put more scotch tape and toilet paper over it. I was completely stymied. I couldn't make either of my parents understand and I would have done just as well talking to a brick wall. I wasn't making "contact". They were both incapable of understanding anything.
While all this pandemonium was going on, my buddy John was finishing the driveway and allowed me to drive a real car and take it to Harris Teeter and grocery shop - we were out of everything - and it was the first time in months I had been able to walk rather than run through the aisles of a store and stock up on so many staples we needed. That was a real treat and did as much for my mental state as it did for restocking our larder.
The past couple of days my Dad's mental state has shown further signs of deterioration. I never imagined seeing my Dad in this condition. My dad was, to me, invincible, sharp, witty, savvy and oh so wise. My Mom's downward spiral is no less stunning, but it's taken a less abrupt dive. Her memory is shot and she's frequently confused by just about everything, but my Dad's decline has been much more rapid and dramatic.
I feel as if I'm on one of those really dizzying rides and I'm trying to catch the attention of the person operating the controls, screaming at him to please slow this thing down because it's making me sick. That's exactly what it feels like. Last Friday I placed padlocks on the gates of my privacy fence to prevent my Dad from slipping through the gate and gaining access to the driveway or street. On Sunday, I completely misplaced the keys to those locks and that's truly not like me. It actually scared me that I couldn't find the keys and I have scoured the house, the garage and the backyard and my only conclusion is that I have hid them somewhere to keep my Dad from finding them. I mean, this weekend alone I had to hide scotch tape, paper napkins and a whole host of other things, not to mention all medication in the house is kept in a locked safe so I guess I shouldn't be surprised that my brain is finally saying, "Whoa...wait a minute...you're pushing your luck!!". My friend John stopped by with his bolt cutters, removed the locks and installed new padlocks and wisely kept an extra key in case I forget where the keys to these new locks disappear. Thank God for friends!
I'm also extremely grateful to my neighbor Pat who alerted me to my Dad's outside activity which precipitated this weekend from hell. And I'm deeply grateful to my next door neighbors, Kathleen and Richard Canizaro, who graciously provided us with a wonderful dinner on Monday and are providing again tonight. I am surrounded by angels and I can't even express my gratitude for each one of them. I couldn't make it without all of these extra helping hands and caring hearts.
This latest downturn has left me exhausted and stressed. I wake each morning with a sense of foreboding; I find myself afraid to imagine what might happen next. I haven't been out of this house for more than two hours since last November when I flew to NYC to visit my daughter, son in law and my twin granddaughters. After awhile, all of this confinement will do a number on one's psyche. Chamomile tea, reducing the caffeine and getting more exercise (treadmill) are certainly helpful, but I need a few hours outside of the compound and that's something I'm working on trying to get in place.
I adore my parents and I'm grateful that I have been able to take care of both of them, but right now this caregiver could use a walk on the beach, an unhurried lunch and just a few hours away from the heavy responsibility. Hopefully in the very near future, I can take a few little breaks to remind myself what the outside world looks like.