Did I do enough?

Rosalyn Carter once said, "There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers."  Seems I have been a caregiver for quite a long season, most recently for my stepmom.  Losing her has been, and continues to be, extremely difficult and painful and raw.

Two moments I cannot seem to erase from my memory:  Sheila sobbing and exclaiming "I don't want to die!" in her hospital room June 12th, and the very vivid way she died in hospice three days later.  

She'd been sick for 15 months before she finally went to the doctor, and I don't mean "sick" in the sense of "not feeling well."  She had lost over 30 pounds in less than 5 months, could not control her bladder function, was in severe pain, and routinely had large amounts of blood in her urine--and I mean LARGE amounts.  By the time I convinced her to go to the doctor, the outlook was grim--three to six months, he said, if she did nothing.  I saw his eyes...he really meant to say, "three to six months, regardless of what you do."  We still made the effort though; she went to a specialist in Nashville, got pep talks from various medical staff, survived some scary hospital stays, and finally agreed to move in with us and go to the hospital in Asheville.  I knew the cancer had spread, and so did she, if truth be told, but we were betting on a few more years, hell, even one more year, with a halfway decent quality of life, even if it meant chemo and radiation and surgeries.  She would be with us, her family. So, the day after my birthday, on June 3, Alex drove to Knoxville and brought her here.  Her level of pain was so severe she could barely walk, so we gave her our room.  After two days, we went to the ER, and from there, she was admitted to the hospital.  Tests, tests, and more tests--the staff was incredulous as to how she had been managing on Tylenol alone--and we discovered the cancer had spread--to her pelvic cavity, to her spleen, and to her lungs.  Surgical removal was no longer an option.  Even more challenging, her right kidney had not been working for over 6 months because of the tumor encroaching on it, but the urologist and oncologist were hopeful they could get it going again, at least enough for her to survive some very toxic chemotherapy.  Six hours after that procedure, our hopes were crushed...again.  Her kidney function was not improving, so the only option left was for her to endure five grueling weeks of targeted radiation--and then the radiation oncologist added, "palliative care radiation" to the treatment plan, stressing that it was in no way to be perceived as curative.  None of the treatments were.  

That was a dark night, and one of the night shift nurses sat with me in the family waiting room, holding my hand, offering me coffee, and watching me struggle with my thoughts, with the reality of it all, with the decision I would have to help Sheila make in a few short hours.  That morning, at 7 am, I crawled into bed with this woman who was more of a mom to me than my biological mom, and told her we needed to talk.  I explained what the doctors and said, reviewing and summarizing the whirlwind events of the past 7 days.  I held her hand, and tried not to cry, and told her what the options were--6 weeks of hell she may not even survive, or palliative hospice for whatever remaining hours she had left.  She cried harder than I have ever seen her cry before, and my heart just broke into a zillion pieces, and then, when the orderly came in with a gurney to take her to her treatment, she abruptly said, "Get out.  No more damn treatments."  Then she turned to me, and told me to start dialing the numbers of every member of our immediate family, and she would tell each one, in turn, how sorry she was...that the news was not good.  Family came and family went, and I was just going through the day like a robot, no emotion, no feelings, just completely shell-shocked.  She moved to hospice on Friday, more family came to visit her there, and by Monday evening, she was "actively dying," as the staff told me.  Don't misunderstand: the staff was wonderful, personable, empathetic, compassionate, and just stellar.  They explained what we would see, what she would experience, each step along the way, and never kept us waiting longer than 30 seconds when we pressed her call button.  I have watched people die before, in all manner of sorts, but I have never actively participated in the death of someone I love.  

Her last few hours with us, she was pretty much out of it--not just from the morphine; her body was truly shutting down.  She held my daughter's hand about 9 pm, told her she loved her, and that was the last thing she said.  The next 90 minutes we watched hopelessly as her body pretty much just sank and shriveled up; her breathing became more irregular, her skin grew mottled, her cheeks became sunken in, and she had this horrible rattle in her throat.  The nurse explained it was her lungs giving out and gave her something to loosen the secretions--secretions that were filling her throat and her mouth, and I grabbed an oral swab and kept clearing her mouth, talking to her, telling her to go, to be with dad, to go to Jesus.  I was only dimly aware of anyone else being in the room, but could hear my sister Nancy talking and my daughter Becky crying.  Then, suddenly, it was over, and she was gone.  Dead.  No longer there.

Since that day, not an hour goes by that I do not relive those last 12 days, that morning on her hospital bed, and the final hour of her life, and I second-guess everything, every single act, every decision, every delay, every "oh well, she will be okay" and every moment I spent with her (and also the ones I was not with her).  I beat myself up for not forcing her to take care of herself last year, for not being a better, more demanding patient advocate, for not grabbing her by the arm and making her go to the oncologist as soon as we got that dreadful diagnosis.  I want someone to explain it to me, to tell me why no one told us until the last few days that our hope was futile, why no one could be honest with us and just tell us to prepare for death.  I regret making her cry one day when I was tired and frustrated and I yelled at her for not going to the doctor sooner--before we knew how really bad it would get.  I want to shake the stuffing out of her friend for not making her go to the emergency room before she lost so much blood, for not calling me or any of my sisters and telling us how sick Sheila truly was.  I am mad at myself for letting my daughter witness her grandmother's last few moments on earth, because it is not at all like TV or the movies; she will have that horrible moment forever engraved on her mind, as well.  Mostly, I am angry and pissed at myself for not being able to save her, or at least to have brought her home to die here, instead of in a strange place (even though the hospice house was absolutely wonderful to us).  Did I do enough?  Could I have done more?  Why didn't I just move in with her after my dad died in December?  Or move her in with us?  

Did I do enough?   

Yes, my faith is intact, and yes, I am well aware (and grateful) that God controls all things, and works all things for our good for those who love Him.  I am at peace with that, and with her time, manner, and place of death.  I know this guilt, this constant merry-go-round of shouldas and couldas and wouldas will not change the outcome.  I do not have that kind of power, to change the future, to change God's plan.  So, intellectually, yes I know I did what I could, and I loved her, and the guilt that I feel is a normal part of loss, especially for a caregiver.  But the human part of me, the emotional side, the critical, nagging, "I will never be good enough" part of me just keeps asking the same question, over and over again.  

Did I do enough?  Did I do enough?  Did I do enough?

There's a song by Warren Zevon, "Keep me in your heart for a while," the song the hospice music therapist recorded Sheila's heartbeat over.   Perfect, simple, and beautiful song.  

Shadows are falling and I'm running out of breath

Keep me in your heart for a while

If I leave you it doesn't mean I love you any less

Keep me in your heart for a while

When you get up in the morning and you see that crazy sun

Keep me in your heart for a while

There's a train leaving nightly called, "When all is said and done"

Keep me in your heart for a while

Sometimes when you're doing simple things around the house

Maybe you'll think of me and smile

You know I'm tied to you like the buttons on your blouse

Keep me in your heart for a while

Hold me in your thoughts, take me to your dreams

Touch me as I fall into view

And when the winter comes, keep the fires lit

And I will be right next you

Engine drivers headed north to Pleasant Street

Keep me in your heart for a while

These wheels keep turning but they're running out of steam

Keep me in your heart for a while

Celebration of A Life

Celebrate a life.  Prepare for death.  But celebrate life.

Too many times I celebrate me, or things, or achievements, and I forget to celebrate life.  I get all bogged down in life’s distractions and details and I forget to celebrate life.  About a month before she died, Sheila told me "Barb, I just don't want a big formal mass like your dad had, with everyone all awkward and sad and crying and all quiet.  I want everyone to be together, to remember me and your dad, to be joyful.  I want it to be a beautiful, happy occasion.  We have had way too many sad moments over the past couple of years".  And that is why we’re all here.  To celebrate a life well lived, to rejoice in our sadness and loss because it means we loved deeply.    And perhaps, hopefully, to stop and breathe and celebrate this gift of life our God has bestowed on us.

About a month after my dad died, Sheila finally acknowledged she was really, truly sick, and had been for some time.  Over the next five months, I spent a lot of time with her, nearly weekly in person, and at least twice a day on the phone.  I was there with her when she got the awful diagnosis of cancer, and held her hand as the doctor told her "if you do nothing, you have 3-6 months to live."  He was wrong.  She’d already lived her life.  Fully and without reservation. Now, she had the chance to prepare for the end of her life--he was just too much of a coward to say it.  He knew it.  I knew it.  And I know now that Sheila knew it.   For the next 12 weeks Sheila and I handled minuscule details and talked about the past, and how much we missed Dad.  And although she was frightened, and in a lot of pain, and trying to hold onto life, in actuallity she was relieved and looking forward to being with her husband again.  We would go out for dinner and margaritas and not even think about calories, and we would eat ice cream for lunch and consume an entire box of chocolate covered cherries while we watched Pawn Stars or Animal Planet.  We would cry, and laugh, and get angry, and fret, but all along, we both know what was coming.  We spoke about God and family and forgiveness and heaven and sins and holiness and if we would be found wanting when it was our time to be judged.  All facades and silly trappings fell away, and if I brought up anything about past hurts or misunderstandings, she'd bluntly tell me, in her own straightforward way, "Bullshit.  Let it go."  I think that pretty much sums up how she lived her life for  78 years.  Letting all the trivial stuff go.  

Sheila was quiet but had a way of getting your attention when it was important.  She was the most honest person I've ever known, and would never compromise her beliefs or her values for expediency or popularity.  And she loved with her entire being.  She had a way of getting along with anyone and bringing out the best in people, and helping others see themselves how she saw them, and, more importantly, how they could grow.  She married the love of her life, and never wavered in that love, and took on a ready-made family of five children without even a moment's hesitation.  She was devoted to her mom, her siblings, and all of us, and she was the glue that held us all together.  She saw through every crazy teenage lie I told her, and let me know that she knew the truth without saying a word, and without blowing my cover.  She helped me through trials, rejoiced with me when I rejoiced, and was always there to offer common-sense advice about marriage, parenting, grand parenting, and life.  Sheila was just the kind of mom who you wanted to please, who you wanted to make smile and laugh, and above all, the person you wanted in your corner for every step along the way.  She loved all her step kids as if they were her own, and adored her grandchildren and later her great grandchildren, and she made all of us feel as if we were her "favorite."  (Of course, everyone knows that I am THE favorite).  She impacted our lives in so many ways. I’ll miss her always, and I’ll love her always.  And I celebrate her life.  Today. Tomorrow.  Always.  Till I can join her in eternity to celebrate eternal life   

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.