On being a caregiver...again

Sometimes I feel all alone, like there is no one in the world who truly understands me, or really comprehends what I am experiencing.  I mean, I know I am not alone, i know I have friends, and family, and of course, most importantly I have God, my faith, my beliefs and the knowledge that no matter what happens, no matter what I am going through, there are folks pulling for me, pushing me along, and at the end God’s waiting with open arms.  But still…like I said, I feel alone, confused, inadequate, especially when it comes to managing what life throws at me.  And I am not looking for pity, or sympathy, or even recognition—just awareness.  Everything in my life that I thought would be hard—exams, dating, finding a good husband, childbirth, cancer, family strife, deaths—it all seems so easy now, and I look back and wonder why I ever worried.  This?  I don’t know…maybe it gets easier.  Maybe I will get better at it.  Maybe I won’t.  

Ten years ago, my parents had a serious talk with me and Alex:  they wanted to know if, when they died, would we be willing to take care of my brother.  Ten years ago, we thought about it for a few days, talked it over with each other, and then willingly and eagerly said, “Of course!”. Heck, he was my older brother, after all, and I grew up knowing what all that entailed, right?  Every year or so, after a particularly exasperating week with David, my dad would ask “are you sure you still want to take care of him?,” we would ask what happened, they’d answer “you have no idea,” and we would roll our eyes and reaffirm our willingness to take over David’s care when it became necessary.  Ten years ago, we figured we would be prepared for that reality, and observed how my parents took care of him, how they spoke to him or about him, how they dressed him, entertained him, and fed him, and thought to ourselves, “we got this…hands down!”  Ten years ago we were still working, albeit retired from the military, and were enjoying our empty nest life—the girls were all married, there weren’t any grandkids yet, and the thought of our parents dying was a dim and distant occurrence.   Sure, we knew our parents were getting older, and sure, we knew it was inevitable that they would eventually die, but the reality of them dying and leaving us with that responsibility of caring for my brother was a long, long way off.  Ten years ago, I was confident I understood the intricacies of dealing with an adult who is handicapped, intellectually and developmentally delayed, with “special needs.”   I did not.  Neither of us did.  And we’re still learning.  After almost two years of being 100% responsible for him, we still do not understand the enormity of it all.  And for me that is the scariest part…not understanding.  Because I pride myself on how quickly I can become an expert on just about anything that I put my mind to, that if I can read about it, be exposed to it, talk to folks, and of course pray about it, I will conquer the problem.  

But now, more often than not, the sheer enormity and indefinite duration of this caregiving responsibility is simultaneously rewarding yet intimidating, comforting yet mind-boggling.  It is like nothing we have ever experienced, or imagined, or thought we would experience.  When our kids were growing up, we faced pretty much the same challenges as any parent, so we had this pool of common knowledge and similar experiences to tap into, and if that was insufficient, we had tons of books and other resources.  Potty training, learning to tie shoes, homework, dating, driving, leaving home—we would meet each hurdle and eventually clear it, then the next, and then the next.  Until our children became adolescents, and finally adults, and needed us less and less.  Then, our parents grew older, and less able to manage everything on their own, so we visited more frequently, called more often, explained the nuances of 21st century technology, and eventually, watched them become more and more dependent, and held their hands as they went to be with those who died before them.  Inevitable stages of life and growth and maturity and death.  And again, we were surrounded by friends and acquaintances traveling the same road, so again, we had access to a seemingly bottomless well of shared knowledge and experiences.  And if any of that failed to shore us up, the internet held an inexhaustible treasury of resources.  

Taking on full time care of an IDD adult, though, at an age when most of our friends are going on cruises and RV trips and taking on hobbies like pickle ball and tennis and hiking, is so hard to navigate, especially when no one we know is in that same predicament.  Sure, my friends may have a friend who has a kid with special needs, or they may have a cousin with Down’s syndrome, or perhaps one of their own kids is IDD, but we do not have ANY friends who have taken on the care of a sibling who will never be able to care for himself.   And trying to find programs, resources, benefits, caregiving tips, respite care, or just a support system is daunting, because there does not seem to be (at least not to us) any one agency or department or organization with all, or even most, of the answers.  Guardianship, social security representative payee, trusts, medical power of attorney, living wills, medication, healthcare coverage, psychological testing and treatment and coverage, public programs, financial assistance…the list is endless.   Online resources range  from frustrating and incomplete to nonexistent and conflicting, and there is not any overarching federal government agency, that I know of, that provides guidelines.  Most of the programs vary by state, and then, by the county within each state.  Availability and eligibility for state programs are hard to navigate, and in most cases, the waiting list for community-based services is 8-10 years.  We were lucky that our local vocational services had an opening for my brother for five days a week from 8-2, and most of my knowledge I have gleaned from random conversations with people in the system, but most of the time I only get a small piece of the puzzle, another phone number to call or website to visit , and still, I end up confused.  In the 50s, kids like my brother were “mentally retarded,” then in the 70s they were labeled as “mentally challenged” or simply, “handicapped.”  But political correctness marched on, and that was watered down to be “special needs,” and after discovering that was too vague, people like David are called “intellectually/developmentally delayed,” or IDD for short.  Whatever it is called, whatever the label, the availability of funding, training, and support services has not improved with the times—it has only become more complex, a huge labyrinth with lots of dark corners and dead ends, and more and more impersonal.  

We provide his shelter, his meals, his transportation, and companionship.  We make sure he doesn’t eat too much, that he takes his medicines right, that he washes his hands and brushes his teeth and shaves his face.  We help him pick out appropriate clothing for the weather, and make sure he doesn’t walk in front of a car, or stop him from picking up broken glass or making unsafe choices.  We show him every third day how to use a phone or shave his face or clean his razor or set a table.  This is so hard to comprehend, because no matter how hard we try, my brother will never change.  He will never learn things most people take for granted, or understand basic social nuances, or be able to be completely on his own.  We have to guess what he is thinking, or determine if he is in pain or sad or hungry.  It is exhausting.  Sure, it is rewarding. But it certainly is not easy.  I know, I know…nothing in life is easy.  But it seems to me that with our vast technologically advancements and innovations and global, instantaneous communication at our fingertips, we could offer families who provide the day-in, day-out care of IDD adults a more comprehensive support network.  Kudos, though, to the direct support personnel at TVS, the liaisons at Vaya Health, and our very understanding and compassionate community.  And to the families who deal with this reality every day, to the ever growing population of aging parents of IDD “children,” I am forever in awe of what you achieve. Every day, 365 days a year, without recognition or appreciation. Hats off to all of you!  

And to those folks out there who, like me, have a brother or sister or cousin who will always need someone to look after them, start researching your options now.  Because the more you know, well, the more you know.  

More than I can handle

We humans are a stubborn lot--proud, too, and much too overconfident in our own abilities to get through life's ups and downs.  I'm no different than the rest of you, mind you. I have faced lots of challenges so far--some easy, some nearly insurmountable, but I managed to stumble along. Sometimes I would ignore the problem and hope it would go away on its own (it didn't), and other times I would tackle it head on, full speed ahead, thinking I could use my superior intellect and vast personal experience to best the situation (again, utter failure).  Obstacle after obstacle, challenge after challenge, I tried my darnedest to overcome each one using human traits, until finally I would realize I couldn't do it.  Not by myself.  I needed divine assistance--if not to solve the issue, at least to get through it.  So I asked/begged/pleaded for God to help me. He did. Each and every time. Not always how I'd expected, or wanted, or prayed.  But He always came through.

A smarter person would have learned her lesson, and realize quite early on how inadequate she really is to manage life's trials and tribulations on her own.  Not me.  Nope.  Decades later, I persist in thinking, even if only for a moment, that I can sort out such and such a problem.  Very rarely, if at all, is my first thought, upon running into some new wrinkle, "Hey, God, I know you've got this covered, and I have faith you will hold my hand through this."  Sure, it may be my second (or third or fourth or nineteenth) thought. But I stubbornly lean on my own understanding.  Silly, silly me.  

Who hasn't voiced a worry to a friend, a Bible study group, an acquaintance, a family member, even a total stranger, and heard the "God never gives you more than you can handle" admonition? I know I have. I've even said that trite little phrase to someone facing a problem, and have felt quite smug when I did, as if that was all the reassurance that person would need.   Heck, I've even told myself the same thing, and blithely forged ahead, tackling whatever it was I had to tackle, trying this or that, all along believing that, since God would never give me more than I could handle, then well, I could handle anything. And when I failed miserably, falling flat on my face, I was bewildered, crushed, and broken. Time and time and time again.  Even as recently as this week.  

Thankfully, though, even though I am stubborn and proud and not too bright at times, I believe that, although God frequently (maybe even always?) gives me more than I can handle, He always provides me the grace to endure any test, and the strength to face the next challenge. Nothing I face is a surprise to God, or impossible for Him to handle.  With His help, and His grace, I can handle anything.  It may not be pretty, and I may muddle through, but even that is more than I could do on my own.

It would be good for me to repeat that to myself 100 times a day...upon waking, eating, and going to bed, and every moment in between.   

I am, after all, a stubborn, prideful human.  And obviously, a very slow learner.

On being a family

What is a family? Over the past sixty plus years, I’ve had my beliefs about family shaken to the very core. I used to believe family was more than just people related to me by marriage or blood, more than just the basic unit in society that social scientists define, more than just a household, or a common last name. I used to believe family was always there, always ready to support you, to stand behind you, beside you, and with you, no matter what happened. I believed a family shared more than a name or parents or a gene pool. A family would love you unconditionally in spite of you, in spite of any shortcomings or sins; a family was loving and supportive, even when no one else would, when it was not easy to do; a family “had your back.” Blood was always thicker than water. Family sticks with you, even when they disagree with you.

Sure our life hasn’t been easy—no one’s life is. We have had our ups and our downs, our successes and our failures, our agreements and our fights.  We are all so different—different values, lifestyles, beliefs, political stances, personalities.  Yet that one tie, the one thread holding us all together, was our past, our heritage, our memories, our shared joys and sorrows. That tie has been bent, tangled, nearly unraveled, and stretched, sometimes to the point of tearing in half, but it has still been there to hold us all together.  

Until now.  

Now that cord, that family tie, is no longer the tie that binds.  It has been severed, completely, cruelly, with a finality that breaks my heart. I have reached out, held out my hand and my heart, and have hoped for healing and mending of our broken family, all to no avail.  Things hoped for, but never realized—a reunion that will never come, a reconciliation that will never materialize, and a kinship that is now forever lost.  When Dad died last December, I heard the death knell of our fractured family and with the loss of Sheila, our fragile family disintegrated, broken like glass, into a thousand little pieces.  You have all effectively and thoroughly shunned me and mine. You have made it quite clear that you do not want to be associated with me. You no longer identify with me as family.  You have pushed us completely out of your lives, and you want nothing to do with me, with my children, my grandchildren—your nieces and nephews and cousins.  

If you meant to hurt me, you have. If your intention was to make me cry, again, you have succeeded. I have spent countless hours praying, reading, lamenting, and remembering, sometimes bitter and angry, but more often than not, mourning for the loss of not just people we loved—Dad, Sheila, Karen, Patrick—but the loss of a shared grief and a desire to heal together.  

But you have not destroyed me. For you have helped me realize what true family is, what it really means to stand behind and with and beside someone. I have been knocked to my knees, and it was there that I looked up and saw where my true family lies.  My faith has been the catalyst to heal, to understand why I had to be broken to be made whole. God reigns supreme in all things, and He alone knows where all this will lead, and how it will glorify Him. I now know that family is not merely a DNA connection, or made up of individuals who we are related to by name or blood.  Family is that wonderful group of people that God has placed in my life, whether through birth or marriage or by chance.  Family is there when I need them, providing support and love and help, grieving with me and rejoicing when I rejoice.  

And when I think about who will be here in October to help remember and celebrate Sheila’s life, and Dad’s legacy, I realize that every single one of those individuals are part of my family. They are family not because of a choice someone else made, but they are family because of a choice they made.  

And God blesses our family, and He will continue to watch over us.

You are welcome to join us, and celebrate, and grieve, and cry, and be, well, family.  But should you choose to stay away, know that I do not resent you, or think ill of you, or regret the past.  

You were my family once.  Perhaps you will join us again.

Letting Go

I miss these people, these parents of mine. So so much. It has been such a rough weekend, starting with that all too familiar drive through the gorge from our house to Knoxville. I couldn't help but cry because this trip is so different, so final. Weird, because I have made at least 25 or so trips over the past 18 months that were ten times more urgent--Dad at the ER, Dad getting worse, Dad dying, Sheila getting sick, an emergency admission. But this one? Driving to their old house to clear it out, to sell and give away their belongings. Friday night it seemed overwhelming, a Herculean task, as if I would never be able to empty it. Sorting through their things, emptying drawers and closets, moving books and dishes and trinkets and clothing, pricing furniture and odds and ends. How in the world do you put a price on a lifetime of memories? 

Finding odd little things that made me catch my breath and cause actual pain in my heart, like my daughter's wedding invitation and the corsage Sheila wore, pressed into her Bible. Or my dad's high school yearbooks and a pile of Father's Day cards he'd kept for the past 60 years. Even in the garage--crazy mementos, such as the disposable ponchos you wear at Niagara Falls when going on the "Maid of the Mist" boat--they actually kept them! And everywhere I turned I could feel my parents, smell them, sense them, hear Sheila tell me "jiggle the toilet handle or it won't stop running." 

Then the actual "garage sale," and dealing with strangers touching everything, critiquing things, asking about sizes, or age, holding up an object and asking for a price, and I would look at what they were holding and could only see my dad's face under the ball cap in their hands, or smell Sheila's perfume emanating from the familiar grey poncho being held up. Not wanting to haggle over prices, but at the same time not wanting to just throw things away, I spent two days watching their home become just another house, as one thing after another got loaded into a truck or a car. Marveled at the kindness of these strangers who paid me more than what I asked, who thanked me, and blessed me, and even helped me clean up; one really kind woman even brought me some fruit. 

Then, without any warning, suddenly the house was practically empty, with only a few things waiting to be given away. I walked through all the rooms, turned the thermostat back up to a respectable, Dad-approved setting, and went outside to close up. Suddenly, a golf cart pulled into the driveway and a friendly older couple waved and asked innocently "hey where's the lady of the house?" And I had to tell these former neighbors, who had moved away six months ago, that it was too late--she'd gone. We talked for 30 minutes, and amazingly enough, I didn't cry, or even tear up--it was as if I was unloading my heart, and I wanted to be gentle, to tell them they did not shock me or hurt me. 

I do regret neither of my sisters were here to help, to grieve with me, and none of their children, my parents grandchildren, even bothered to reach out, to say well done, or thank you. But in a way, it was better this way, to be alone, alone with my feelings and memories and emotions. And I know Dad and Sheila are together again, and they are no longer hurting, or worried. And I know they loved me, and that they knew I love them. And I am ever so honored they trusted me to take care of things for them in the end. 

Love you both. Thanks for all the memories.

Rest

Rest and relaxation.  Taking a break from reality.  Slowing it down.  Getting away from it all.  Unplug.  Off the grid.  Decompress and de stress.  These are the words that come to mind when you mention the word “vacation,” at least here in America.  In many other places in the world, people (and businesses) go on holiday, with the only objective being to not work, but to enjoy something that isn’t work.  Not here, no.  We fill our days, our hours, our minutes, in fact our every waking moment, with schedules, to do lists, goals, and tasks, and we pride ourselves in checking off the boxes.  Vain and self assured, we foolishly think we can control our lives, so we fill our days to the brim, oftentimes with more than we can humanly achieve.  Throw one unexpected twist—a flat tire, a cold, a broken furnace, or a death of a loved one—and our house of cards collapses.  And so do we—so we seek rest in a vacation, many times applying the same rigid timelines we apply to our daily lives.  

I recently returned from a two-week vacation, a long-awaited (and much deserved, I told myself) break from all my responsibilities, a getaway from the hustle and bustle, a salve for my tired soul, and comfort for my grief. You see, we've had a heck of a rough season, afflicted in every way, and although we were not crushed, I was pretty close to it.  I'd been abandoned and betrayed by family, all four of our parents had died in the space of two years, we had taken on huge care-taking and legal responsibilities, and my faith was perilously teetering on the edge of complacency.  Adding insult to injury, I was out of shape and overweight. Every fiber of my being screamed at me to run away, escape, forget, bury my anger and my sorrow and my grief, to rediscover my true self.   

Funny thing happened.  Even though the itinerary was chock full of activities, destinations, tours, and countless amenities (i.e. massages), I was not a slave to the schedule.  As I relaxed and unwound, I learned the beauty of ignoring deadlines, sleeping in, and just being me, and resting. I ran away and escaped, to be sure--right into the hands of a loving God. And discovered my resting place was always there, inside of me, where He had touched my heart and set me aside.  Amidst the joy of rekindled (and new) friendships, I realized how blessed I am, not DESPITE all the heartache, but BECAUSE of the heartache.  And I longed for home, to go back to the stress and the sleepless nights and the mundane tasks and the not-so-mundane tasks.  I was no longer afraid of lamenting, or sorrow, or frustration--they were all simply paths to a compassionate and merciful God, and a booster shot of His grace.  

Humbled, I tumbled right back into my crazy, hectic life, thankful for the respite, but relieved to be back home, and awed by how still and peaceful I felt deep down inside, even, no especially, in the midst of an emotional tirade, confusion, or the deep dark pit of depression.   That tiny, simple kernel of peace was still there, and all I have to do is reach inside, take a deep breath, say a prayer, and let it calm the maelstrom that is me.  

Rest.  In Him.  In His love.  In His peace.  In His word.  

And find rest.

Thank you Jill and James.  

Freeing up Space

We all use computers--they are a fact of life now, and aren't going away anytime soon, if ever.  Love it or hate it, information technology is impossible to avoid--we are fully ensconced in the Information Age; an entire generation has grown up and gone on to have kids of their own knowing nothing but. Try as I might, I cannot find one aspect of my life that is not touched by computers, and I dare anyone to tell me otherwise.  It is a paradox of 21st century life that computers make things easier, or more complicated; faster, or more time-consuming; streamlined, or more complex.  Rare is the day that I do not have both my phone and my laptop within arm's reach (or on my lap), as I update my calendar(s), respond to instant messages within seconds, balance my checkbook, and research something or other while simultaneously adding items to my Amazon Prime shopping cart.  Sure, life today looks a lot different than it did 25 or 50 years ago, but, in reality, we are still living our lives and accomplishing things on our to-do lists just like our ancestors--but in a different way.  We sleep, we eat, we shop, and we have leisure time, reading and journaling and playing and being entertained.  The medium may have changed, but the objective is the same--to get stuff done so we can get more stuff and have more time to enjoy that stuff.  Blogging (diaries and journals); web browsing (reading the daily paper); sorting and uploading photos (building scrapbooks and picture albums), and reading research articles (encyclopedias); watching funny videos and listening to music (TV and radio and records); and sending messages and video chats (phone calls and writing letters).  But I digress...the title of this says I am supposed to be talking about freeing up some space.

A few days ago I was uploading some photos onto my laptop, and I got this warning that I did not have sufficient room on my drive--and I would have to free up some space. Dr. Apple Support advised me to change some settings and free up space by opting to store some items on my iCloud (or is it "in" the cloud? I am never sure about this). So, I followed those steps, selected the right utility, checked and unchecked boxes as suggested, and, voila!, the MacBook Air storage graphic now had over 2/3 of its potential storage space available.  Yeah me!  All of the sudden, though, I get warnings--three in a row actually--that my iCloud storage is (1) over 50% full, then (2) almost full, and finally, (3) completely full, and I am urged in ALL CAPS to hurry and purchase more storage space lest I lose everything, signed, "the iCloud Team."   What the heck?  How was that advice helpful if freeing up space on my computer by moving a lot of it to the "cloud" only resulted in not having enough space there either?  As my husband would say, it must be a conspiracy--it's all about the money.  "They" just want more money, to trick me into buying more stuff to keep my stuff.  Well, I was not having any of that nonsense--I was not going to buy any more storage in some cloud that no one sees or can explain to me in a way that makes sense, to store MY files and photos.  It's bad enough we already have to pay almost $100 a month to watch TV and talk on our phones and use our computers.  So I decide to take a good look at my files and photos and see if I really do have that much stuff taking up too much space, and to determine if I could possibly (ahem!) do without some of it.  Off I go on my quest...

At first, I am just half-heartedly scanning my files, looking for some junk to delete--old downloads, duplicate files, photos I already have uploaded on a photo sharing site, and expired documents. I figure out how to delete emails that kept mysteriously reappearing by solving the "archive vs trash" mystery in iOS mail.  I upload more photos to Shutterfly, and I delete temporary files I forgot to delete years ago.  After hours of painful purging, I check my available iCloud storage--it is STILL over 98% full! This is serious, and I am perplexed--I got rid of anything I do not need to keep, or use. Or did I? Hmmm. I change the sort filter--instead of by date, I sort by size, and then by subject, and I begin to find huge files, files with many megabytes, and attachments. Music, and photos, and documents--all being kept but not really used anymore.  Heck, I use Spotify and Amazon Music and other digital media services now, while my CDs and iTunes music library collect dust (well, iTunes doesn't get dusty, but I have forgotten I even have music loaded).  And photos?  Like I said, I already have uploaded nearly all my photos for the past 20 years onto Shutterfly, from which I routinely create photo books and prints for framing; then there are the 20 plus Groovebooks on the bookshelf, and the 10 vintage photo albums in my cedar chest. Ever so slowly, begrudgingly, I begin to delete images from my computer and the cloud--first only a few, then more, until finally I have dumped over 1500 photos and an unknown amount of audio gigabytes into my virtual trash bin.  Storage check:  better, but still over 70% full. Okay, now this is pissing me off--time to get serious.  I go back to my documents folder, and my mail folders, to find more space pirates.  I peruse the file folders and the email subjects, especially those with attachments, and I find the culprits.  Thousands upon thousands of bytes, images, PDFs, recordings, and zip files, all with the same subject:  the travails and drama and accusations and angst of the past four years.  Yep, the folder I jokingly renamed "crazy pants" because I could not bear to see the word "mom" blinking in my file finder window.  A folder full of documents and court hearings and lists and messages and screenshots and audio recordings, even court recordings, covering the most painful period of my life.  Taking up space.  On my computer, in the iCloud, in my mind, my heart, and my life.  Too much space.  I was in danger of losing critical functions, and not just computer functions, either.  

I clicked on the file folder, opened it, and quickly did a "select all" and pressed the delete key--a little window popped up asking me "are you sure you want to delete these 134 files?"  I hesitated briefly, and then clicked delete.  Next, I did the same to the huge email trail between me and attorneys and nurses and the court and my sisters--moved to trash.  And finally, to prove I was serious about freeing about space, and moving on, I clicked on the "trash" icon--first on my computer, and next on the mail server--and selected all files.  My finger hovered ever so briefly over the "delete all files" command, and then, click!  They were gone.  A quick check of my storage space validated my efforts--my iCloud now had over 85% free, and my MacBook was fully functional again.

Freed up space.  Space to breathe.  To live.  To make memories, good memories.  To forgive, and perhaps forget someday.  Now that they weren't taking up valuable space anymore, wasting space, out of sight, and hopefully, soon, out of mind.

Huge sigh of relief.  

Bitterness is gone.

Space freed.

The Thankless Job

I didn’t ask for this job.  I did not ask to be appointed health care POA and executrix. And I knew it’d cause issues with my sisters. I just didn’t know it would be so soon.  After Sheila died they all deserted me.  They left and never even once told me what they wanted or asked if they could help.  They just criticize and find fault no matter what I do.  They manufacture slights and wag their heads over imagined wrongs.  I know they are hurting.  I hurt too.  And I hurt for them because I cannot help them at all.  I cannot give them the peace they seek.  Nothing will give them that peace. Not a car.  Not things.  Not money.  Not control.  Not remains.  Not anything.  Only God can give them that peace and they are not receptive.  They want to lash out and shoot bitter arrows at me.  They want me upset and confused and disoriented.  But my orientation is in You, Jesus.  When I forget that, when I try to find answers by looking inward, then I am blind.  But when I crumble and fall on my knees and hold my arms out to You, and look upward, that is when I find peace.  Peace that all will be ok.  That nothing matters but you.  Nothing is new under the sun.  Not my joy.  Not my worries.  Not my sorrow.  All is planned by God.  And in that I find rest.