You Are Not Alone

"Life is what happens to you while you're busy making other plans."

~ Allen Saunders

This is a longer and much different post that I intended to write in February.  Life did indeed happen while I was making other plans.  What follows is a compilation of excerpts from my personal journal.  I share them, not to offer any profound insights or solutions, but in the hope that you can identify with some of my thoughts and emotions and find that at least a little comforting.

Mar. 3 - This virus - why am I only attending to it now?  Apparently, it's been ravaging other countries for weeks now.  This is the downside of not watching the news.  How many other Americans are unaware of the problems that may be coming our way?

Mar. 4 - At a recent rally, the President actually said we could wake up one day and it would be gone.  It's one thing for me to be oblivious, but the President?

Mar. 6 - Italy has shut down all of its schools.  And still, we do not seem to be taking this seriously.  This denial and even arrogance is astonishing and bodes serious concerns for us, I fear.

Mar. 9 - Why am I feeling such a sense of trepidation?

Mar. 11 - Italy is in complete lockdown.  I just watched videos of Italians in Siena, Naples and somewhere in Sicily standing on their balconies singing together to try to uplift their spirits.  One of my favorite memories is of a visit with friends to Siena on a bright afternoon, eating gelato among a throng of tourists.  Today both husbands are gone, taken by cancer within the same week and Siena looks like a ghost town. I weep at the breadth of loss.

Mar. 12 - We've canceled our April and May luncheons.  If our government won't give us a clear direction, we have to make decisions to protect our selves and our membership.  I am so proud of this Board.  And speaking of decisions, I am putting boundaries around watching the news.  I've been glued to the TV, seeking information and recommendations from the scientific and medical communities.  But too much information and I leapfrog across depression into despair.  I need to pay as much attention to my mental and emotional health as I do my physical health.

Mar. 13 - Emerging voices are sounding an alarm that we are not prepared for a crisis of this magnitude.  Not enough ICU beds, not enough supplies or personnel should this hit us the way it has hit Italy or Spain.  Not enough people taking this seriously.  The attack on science and our press in recent months has diminished their authority.  I fear this pandemic is going to accentuate the cost of our political polarity and expose the underbelly of our society.  We are certainly going to see an interesting cast of heroes and villains.

Mar. 14 - A FOX commentator asserting this is a hoax, accusing opponents of using the virus to embarrass the President.  This is not helpful.  We need facts and reliable information.  How do I remain responsible and sane amidst comments like this and the name-calling and diatribe on TV and social media venues?!  Boundaries, boundaries!

Mar. 15 - I just created a binder of lists - books to read, friends to contact, projects to complete, topics/ideas to explore, hobbies to take up again, etc.  At least, it helped to restore a minimal sense of control.

Mar. 17 - I woke this morning and set about my usual routine - breakfast, taking a few moments to notice and appreciate the shrub beyond the courtyard wall in its coat of purple spring buds, then curling up in my favorite chair with my journal in hand.  Then, I made the mistake of checking the stats - 4565 cases in the U.S. and 87 dead.  The juxtaposition leaves me at best confused and at worst, anxious.  And if I am anxious, retired here in the safety of southwestern UT, what about all those millions of people out of work, many in congested cities?  How are they coping?

Mar. 18 - Watching views of people ignoring the call for social distancing - or is it that they just don't care?

Mar. 19 - Sixteen months today since John died.  I am taken by a wave of relief that he died when and how he died - his valiant heart simply giving up the struggle, in our home, his hand in mine, my sister here to support me.  How would I have handled watching him struggle for air behind a glass barrier as I have seen images of people in just that circumstance?  What if our doctors have to decide who they will try to save as Italian doctors are facing?

Mar. 21 - Structure, focus, mindfulness, gratitude - I cling to these words.  Far too easy to descend into anxiety or outrage at the ineptitude of our federal government.  Thank heaven for some of the governors who are showing up in this leadership vacuum.

Mar. 23 - Thankfully, I have much to be grateful for - friends checking in, the network of support I'm blessed with, learning to use new technology, spring weather, living in a relatively small and safe community, and always the companionship of my sweet rescue dog, Rufus.

Mar. 26 - The cloudbursts of personal grief seem to have subsided, blown away by the larger sense of loss, existential grief as it were.  So much loss - jobs, security, trust in our institutions, in one another, in the belief that we will be strong enough, resilient enough, smart enough and united enough to emerge from this whole and healthy.  My habit of recording five things to be grateful every night is a sanity saver.

Mar. 27 - I have to remember not to try to make sense out of nonsense - it's impossible and exhausting.

Mar. 28 - Thank heavens for images of individuals helping their older neighbors or the creative uses of technology to stay connected, or the generosity of some of our athletes and celebrities and the amazing courage and compassion of our health care workers.  These images comprise a life preserver in this sea of uncertainty. They restore a sense of hope for me.

That's enough for now.  I hope this does as I had hoped for some of you out there - you are not alone.

I Am No Stranger to Grief

"Grief is not a train track toward acceptance.  Instead, it is more of a 'getting lost in the woods.'"

~ Alan D. Wolfelt, PhD

I am no stranger to grief.   I have walked the path of grief alone and as a companion of family members and friends many times in my 78 years.  I have grieved openly over the assassinations of my youth and the shootings too common these past few years.  I am no stranger to grief.

So I thought I was prepared for John's death.  I was naive enough to think I was "ready".  Moreover, I was more concerned that I would be relieved rather than bereaved.  I wasn't - either ready or relieved.  I was shocked, that the pain and fear and regret were so crippling; also shocked that I was shocked.

It has been 12 weeks now, 12 weeks today, and the initial shock waves after subsided.  I have put my feet forward into the woods, deliberately, albeit with no small measure of anxiety and trepidation.  It is helping to think of this as a journey on an unchartered path through a dense forest.  This metaphor helps me when I'm going along, seemingly upright and grief descends like an unexpected branch that smacks me in the chest or an unseen root sending me tumbling face forward to the ground.  It helps when is a ray of sunshine breaks through the canopy of grief and for a moment I feel guilty that I feel OK.

I'm pretty sure not everyone thinks in metaphors nor finds solace in them, but this one works for me.  Grief as a path, an unchartered path through a dark forest.  A path that one has to create slowly, carefully, a step at a time.  Sometimes moving in the wrong direction, sometimes stumbling, sometimes frightened and disillusioned, but eventually finding the clearing.

I remind myself that I am no stranger to grief.  I may not have been lost in so vast, so dark a forest before, but I have made it through a miscarriage, a divorce, the loss and betrayal of friends, my own cancer - I will survive.  Someday, I may even thrive again.

One Step at a Time

"Mountains cannot be surmounted except by winding paths."

~ Johann Wolfgang Von Goethe

As much as I love a good quote and have notebooks and computer files filled with them, I have committed very few to memory.   This quote by Goethe is the most recent.

In reflecting on how few I have memorized, I realize there are three reasons a quote makes the cut - it conveys something I already believe but with fewer and more impactful words, it evokes a feeling or belief I wasn't aware I have, or most importantly, it challenges and impacts the way I am thinking.  This quote falls into the third category.

Prior to coming upon the quote, I was most influenced in the way I think about life and its challenges by a transaction with a friend in December l999.  We had just moved to Vegas with my mother, who was grieving the sudden death of my dad that October.  Determined to give her a decent Christmas and reassure her that this was now her home, exhausted and grieving myself, I nonetheless pulled out all the stops and decorated the house (with many boxes still unpacked in the garage) and invited friends for a holiday party.  

The evening hadn't progressed very long when my friend pulled me aside to paraphrase the Breda O'Connor quote and remind me that my future as my mother's caregiver was a marathon and not a sprint - a simple, immediate, and effective image for me.  So effective that I clung to that image for the next 18 years, through caregiving for mom, my battle with breast cancer and John's stem cell treatment for non-Hodgkins Lymphoma.  And it served me well.

But today, soon to be 77, once again a caregiver, the metaphor or image of running a race, even if a marathon and not a sprint, is no longer helpful.  Not that I would have recognized this were it not for stumbling on this quote.  Somehow the image of walking a winding path feels more congruent with my experiences these past 18 months since John was diagnosed with a currently incurable form of MDS.  Plugging uphill, with unpredictable switchbacks, dips in the road, obstacles to be cleared or avoided, moments when I can barely breathe, the path ahead poorly marked - yes, a winding path up a mountainside.  The more I have reflected on this quote, the more validating it has become.  The more helpful it looms for the months ahead.

I don't know the shape of the mountain ahead of us or how far up the path we will make it together, but I do know, without a doubt, that it will be winding and circuitous, in spots even treacherous.  I do know that we can and will take it one step at a time.

*If you found this helpful or know someone who might, please share and like my page.

Hope for the Best; Prepare for the Worst

The first time I heard "hope for the best, plan for the worst" was the morning the man designated to become our hematologist delivered the news that blood tests revealed John had a cancer of the blood and perhaps only six months to live.  

Dr. W. was the hematologist on call the morning after I had driven John to the ER, struggling to breathe. Tall, lanky, soft-spoken, and unassuming - my first thought was of Ichabod Crane. He said as gently as I think anyone could that he thought it could be leukemia, advanced and apparently aggressive. When I broke down in tears, he put his hand on my shoulder and uttered the phrase that I have since inscribed behind my eyelids.

After a second series of tests at MD Anderson, a diagnosis of Therapy Related MDS was confirmed and the prognosis extended to two years. Once again we were told this cancer is incurable and once again exhorted to hope for the best (which would be improved treatment to add life expectancy), but plan for the worst.

It has been a year since that morning I brought John to the ER.  We somehow continue to be hopeful, referring to John's cancer as currently incurable, learning how to work effectively with the clinic, consulting with MD Anderson, adjusting schedules and habits.  All thanks to my naturally optimistic husband.  He, who reminds me he is not a statistic.  He, who declares he will live longer than two years.  

I, on the other hand, at my best could be described as a realistic pragmatist.  On my worst days, as a chronic worrier.  So, I research and note questions for the doctors.  I wake in the middle of the night to make note of something else I need to learn "just in case" or add to our "plans." I try to imagine life without him.  

Historically, we have learned to balance his optimism with my pragmatism, to temper my tendency to worry with his hopefulness, to sustain a healthy tension between our two world views.  But this is new territory. His cheerleading hasn't helped me sleep at night.  And I have struggled to create a sense of urgency without diminishing the sense of optimism he needs to continue to fight.

Then, in the middle of uttering one more time that we needed to remember to hope for the best but also plan for the worst, I realized the phrase had lost its power.  It had become a cliche.  I stopped and asked if John could help me hope for the best, but prepare for the worst.  I asked if we could move from talking about and thinking about and listing to more deliberate action.  Could we schedule an hour every day to check something off my to do list or at least move something forward? 

So - we are preparing.  Can I imagine life without him, no way.  Do I want to, no way.  But for now, at least, there is a semblance of balance again.  We can do both.  We can still hope for the best while preparing for the worst.  

Illegitimi Non Carborundum

It has been almost eleven months since John was diagnosed with Therapy Related MDS, a relatively new and currently incurable cancer of the blood.  Our initial prognosis with six months extended, thanks to a second opinion, to two years.  These months have flown by, but looking back, I am proud of how we have settled into a "new normal" - a daily way of living with this new challenge.  A new normal marked by grace, partnership, support and a quality I've come to recognize as resiliency.

Resiliency - elasticity, malleability, flexibility, plasticity, buoyancy - I've long recognized this in John.  With a history of non-Hodgkins that required the stem cell transplant that is the cause of his current illness, five hernia operations, three bouts of skin cancer, and macular degeneration, one might expect him to rail against the heavens or to just give up or give in. But he endures.  He keeps getting up.  He takes a day at a time and never relinquishes the fight.  He stays remarkably present and positive. He remains optimistic and reminds me that he's not a statistic.  He reminds me, too, that he beat the odds once, and he can do it again. That he can endure until there is a breakthrough that will extend his life with me.

What I haven't recognized is that his resilience has rubbed off on me.  I've thought of myself as tenacious, strong, and determined; and those are not bad qualities. But I like resilient better.  It's more fluid, less easily bent or broken.  Definitely an asset during these tenuous days.

And these days are tenuous.  There are the ordinary breakdowns of everyday life.  The breakdowns we all experience. We lose our TV picture. It's so hot that our potted plants all wither and die.  We keep receiving those calls that our computer is infected or someone can help us with college loans we never took out 50 years ago.  A light on my dashboard lights up for the 4th time, still not fixed after three trips to the dealer. The bombardment of news gets more frightening with each passing hour.  I'm not sleeping well.

What's a resilient soul to do?  Well, work patiently with the disembodied voice in technical support to recover the TV picture and be grateful we got a living breathing soul.  Remove the dead plants and wait till it cools off before replacing.  Stop answering calls from locations we don't recognize.  Take the car to the dealer and tell them the car will be returned if they cannot fix it properly once and for all - they did.  And limit the news, which also cured the sleeping problem.

Then, there are the bigger breakdowns.  The medical assistant that we have come to rely on for information and support suddenly leaves the clinic to move to another city.  A few days later, a dear friend who has been a key member of my personal support system lets me know she is moving, a wise decision for her, another loss for us.  A shot that we have hoped would make transfusions needed less often has had no measurable effect.  

What's a resilient soul to do?  Well, learn to access and interpret John's blood test results on the computer.  (Actually, doing so makes this resilient soul feel just a little proud of herself). Get to know more of the clinic staff. Plan a trip to see our friends after they are settled in, giving us something to look forward to.  Work with our doctor to design changes to John's treatment plan.

This is our new normal.  To take in new information and adjust, as quickly as we can, as patiently and gracefully as we can.  To work with each other and our network of support. To seek solutions rather than rail against the problems.  To focus on what is within our control. A day at a time, some days an hour at a time.

I do like resilient better.  It's more fluid, less easily bent or broken.  Definitely an asset during these tenuous days.  Definitely, a valuable asset for an unknown future.

Nevertheless, He Persists

John is my husband of 34 years, my best friend, my partner, my love, and my hero.  My hero, because over the years, I have watched him endure three bouts of skin cancer, five hernia operations, the gradual loss of hearing, and a stem cell transplant for non-Hodgkin's Lymphoma.  Each time with perseverance, courage and a belief that he could handle whatever was thrown at him.  And he did.  And so, we did.

Last September he was diagnosed with Therapy Related MDS, ironically brought on by the transplant he received 15 years ago, the result of a mutating chromosome impacting his ability to produce red blood cells. One of his first questions was whether there was a gene for orneriness, for though we have been told his condition is currently incurable and the prognosis for survival is approximately two years, he is determined to prove the experts wrong.  After all, the original lymphoma prognosis was three years and he made it for fifteen!

His determination and his persistence are remarkable, and perhaps the most critical reason he has survived so many physical challenges with a modicum of grace.  I watch him as he gets chemo shots for five consecutive days each month, wait with him to hear if he might need another transfusion (we've lost count of how many now) and marvel that he can get yet another round of Neupogin shots for declining white blood cell counts with calm acceptance. The most he has ever complained is to say he is feeling like a human pin cushion. The most impatient he becomes is when he has to wait more than 15 minutes for an appointment.  I can almost predict the moment I'll hear, "C'mon doc, I'm ready," 

I have always ascribed his survival to resiliency or to pure stubbornness, to that hypothetical gene for orneriness.  Today we had an exchange that made me reconsider.  We were driving back from an appointment with the eye doctor, because on top of everything else, John was diagnosed with macular degeneration earlier last year.  The diagnosis today confirmed our observations that his eyesight is worsening, perhaps the result of the chemo, and our decision to curtail his driving, though difficult, is appropriate. I told him how much I respect him, how much I admire his inner strength.  How much he inspires me to remain optimistic, to stay strong, to fight the good fight.  How much he is my hero.

His response was to repeat a quote I had never heard before.  "Persistence and determination alone are omnipotent." ~ Ray Kroc,  the founder of MacDonald's. Persistence, determination, not stubbornness, not orneriness.  I asked when he first came across the quote; he said many years ago.  He had to look omnipotent up in a dictionary, but the quote has been one of the most important in his life, and consequently in ours.  I asked if it has become a silent mantra.  He paused and said no, he just has tried to live his life with those values at his core.  And in my experience, he has.

There are many people who, over the years, have commented on my strength.  I know I would not be as strong as I agree I am were he not as strong as he is.  As persistent and determined as he is.  He is my best friend, my partner, my love, my hero.

Thank you, Ray Kroc.

Escape Is Not a Dirty Word

"None of us can face what's happening head-on all of the time."

~ Sheldon Kopp

What Took You So Long?

Reading Sheldon Kopp's If You Meet the Buddha on the Road, Kill Him in the 70's was life-changing.  I came upon the book on a bookstore table while on a mission to get past the anger and self-recrimination following a painful divorce, convinced that someone smarter than me, wiser, could provide a road map out of the angst and confusion that was overwhelming me.  I think I had read a half dozen self-help books by the time I came upon Kopp (easy to do in the 70's) and still hadn't found that map.  And there he was, telling me I had to create my own map, that there was no guru, no Buddha out there to show me the way. Or as he stated pretty succinctly in an 'eschatological list' at the end of his book - "it is so very hard to be an on-your-own-,take-care-of-yourself-cause there-is-no-one-else-to-do-it -for-you adult." I had to chart my own course.

Initially, I threw the book across the room.  Then, picked it up and read it again.  And over the years, have revisited parts of it several times.  Whereas he never intended to be another Buddha, his exhortation to take charge, to take responsibility for my life has never left me. 

So, it was intriguing, to say the least, to discover while recently culling my library, that I own another of his books, one that I hadn't revisited for many years.  What Took You So Long ? An Assortment of Life's Everyday Ironies is a slim volume of photographs illustrating simple, insightful statements written by Kopp in the late 70's.  Whereas The Buddha contains language and references that definitely are dated, this little book could have been written yesterday.  

Consider - "You wait for everything to be all right, knowing all the while that the next problem is in the mail" or "Not everything worth doing is worth doing well" or " Unable to get our own way, often we settle for trying to prevent other people from getting their way" or "If we allow pain more of our attention than it requires, we miss some opportunities for joy."

Any of these - and several other - statements continues to ring true for me, perhaps even louder at this stage of my life, but the statement about escape is a welcome reminder, a suggestion that it may even be necessary to take a break, to escape for awhile, without feeling guilty.  Because "often things are as bad as they seem" and yes, "no one can face what's happening head-on all of the time."  So, I'm taking a recess from Facebook for awhile, from all the petitions and surveys, from all the outrage and angst, the venom and the vitriol, from all the requests for contributions.  I'm reading a new mystery series, potting some succulents, redecorating the guest bathroom, working on a jigsaw puzzle, starting a new still life.  It'll all be there when I check in again.  All the worry, all the outrage, all the divisiveness, all the drama. all the challenges.  For now, I choose to escape - for awhile.

And once again, wherever you are, Sheldon Kopp, thank you.

Thank You, I Needed That

"Perseverance is failing 19 times and succeeding the 20th."

~ Julie Andrews

This past weekend, I watched the Masters Golf Tournament with John.  I'm not a golfer, not even a sports enthusiast, but I enjoy watching golf.  And I think John enjoys having me watch with him.  That's a good thing, because as our world becomes smaller and smaller, and we are with each other almost 24/7, finding things we enjoy together has become more imperative.  

I'm enjoying learning more about golf, about the nuances of the sport, its rich history and protocols, the various tournaments and courses, and above all, the golfers.  Perhaps, its the legacy of growing up with Arnie and Jack, their ups and downs, their families, their charities, watching them age along with us. Perhaps its the relative absence of scandal and notoriety in the sport.  (I did say relative absence.)  And the presence of families, in some cases generations of families.  This sport speaks to my values as well as my history.

I now root for a couple youngsters - Ricky Fowler and Jason Day - and am particularly fond of the Spanish veteran, Sergio Garcia, who has had the reputation of being the best golfer who has never won a major PGA tournament.  So Sunday found me cheering for him, hoping against hope that he would finally win his first major, and not just any tournament, but the revered Masters, the tournament that has plagued him for the 19, yes, 19 years, in which he has competed.  "I hope he wins.  Please let him win.  Come on Sergio.  You can do it, Sergio."

And he did.  He played his way into the lead, was overtaken, fought back to a tie, and finally won by two strokes in the playoff.  And the crowd roared - Sergio, Sergio, Sergio. 

In the days since his victory, I've considered why I like him, I'd even say that I admire him. Why did I become so invested in his win?  Why did I take such pleasure in his joy and celebration?  (And I did. You would have thought I knew him personally, that he was my kid brother or nephew.)

The obvious answer is that I often cheer for the underdog, but in this case it is more than that, much more.  I admire his perseverance, his tenacity.  Nineteen years and he plays with the same competitive passion as he did the first year I watched him.  I respect the respect he shows for his mentors.  Proteges often forget those who taught, and supported, and encouraged.  He never does.  I applaud his loyalty - his coach is his father, always has been.  Even when Sergio grew discouraged and almost quit the sport, he never abandoned his dad, just worked harder.  And what he apparently worked on was his mental game.  That may be what I admire the most.  That he looked inward, and grew not just as a golfer, but a man.  Perseverance, respect, loyalty, hard work, personal responsibility. 

In this day when the news is filled with dysfunction and greed, venom and vitriol, murder and mayhem, it was such a joy to watch someone achieve his dream because he is talented and diligent. To hear him graciously, sincerely acknowledge his family and mentors.  To see his joy and gratitude.  To see the respect shown between the players and the crowds.  To listen to thoughtful, nuanced commentary.  To celebrate.  To be reminded that this is still possible.

A Little Rant

"...whatever you do you have to keep moving forward." 
~Martin Luther King Jr. 

A couple weeks ago, I blogged that the role of patient advocate calls for "skill, patience, tenacity and fearlessness." After yesterday, the seven hours John was in the hospital, I would add an adequate knowledge base, courage, a thick skin, support and the ability to regroup and try, try, again (is there a single word for that?)

Yesterday...John was scheduled for a bone marrow biopsy to provide information as to the efficacy of the chemo treatment he has been receiving.  Going into this procedure, we knew from the results of his blood work on Monday that his hemoglobin count was low and dropping; we could see the overt physical signs and indicating, from four months experience, the likelihood that another transfusion soon would be necessary was obvious. Going into this procedure, we were both, I believe, understandably anxious.  Trying to be responsibly proactive and to avoid more tests and procedures for John than necessary,  I requested help from our cancer clinic to arrange for a transfusion at the hospital while we were there, if so indicated.  I was assured that this could happen.  I also repeated my request Tuesday with the liaison for the hospital when she called to confirm appointment particulars, and once again was reassured that this could happen. Well, you know where this is going.  I was able to arrange for his blood to be typed (a step necessary for a transfusion) shortly after we arrived, but when the hemoglobin count came in indicating a further drop and the hospital physician contacted our hematologist for his authorization, he reported that he had been told not to provide the transfusion so we might see if his numbers improved- even though this count has compelled prior transfusions and has never improved without transfusion.  

This decision, I felt, would put John at further risk and possibly require a visit to the ER.  A visit we would endure, not the hematologist nor hospital personnel.So, I pressed on.  I called the clinic myself and expressed my concerns, knowing full well that I was being labeled as "upset" (which I was, both labeled and upset), probably over-reactive, and daring to challenge authority.   I asked for more information regarding the decision, the minimum I felt we were owed.  Bottom line, John received a transfusion.  And we left, seven hours after we arrived, exhausted.  And I am not done.  I will speak with our hematologist to clarify what happened and why.  I will provide feedback to the hospital that the attending nurse was amazing.  She helped whenever and wherever she could, more than others might have.  But, I will also convey that I wonder why I gave all that information to the hospital on Tuesday if it never filtered down to the appropriate department.  

I will provide feedback that I would hope the assistance I received was because John needed it, not because I was "upset" and needed to be appeased. I will convey that there is a cost to these breakdowns and they need to know the cost.  John would undoubtedly be in worse shape today had I not persisted.  I know that it adds to John's stress to see how hard I often have to work to get him the help he needs, even the help we are being promised...and anything that adds to the stress we already face, is, duh! at a minimum, upsetting.  An additional cost is we lose trust in the organizations we must be able to trust. To be clear, I know these things happen.  I suspect they will happen again, in another context, with other players. I see no malice of intent.  I appreciate the help I did receive.  Too often, these breakdowns are the consequences of  system issues - the lack of communication, guidelines that become law and hamper creative problem solving, cultural biases that discourage questioning or taking personal responsibility.  

But although I recognize the system issues and can appreciate the frustration those within the system may also experience, only they can improve the system.  I know I will deal with each occurrence as it happens. No doubt. I suspect this isn't the last time my upset will loom as the immediate problem.  No doubt.  I will strive to be as proactive as possible and continue to provide feedback that might be helpful, both positive and negative.  I will continue to be better informed so that I can ask effective questions, make effective requests.  As the expression goes, I can be like a dog with a bone.  Just wish it wasn't so demanding.  Just wonder how other caregivers, who may not have the skills, the tenacity, the energy and support, are making it? 

But I do feel better for this little rant!