A TGB READER STORY: Ladies of the Silent Generation
Me and Oregon's Death With Dignity Act and The Alex and Ronni Show

Meltdown Monday

I felt it building and then it hit me hard. Suddenly I couldn't think straight, my mind skipping from one unfinished thought to the next, to the next, to the next and me unable to stop them or even make sense of them.

At the same time I knew I was out of control but I didn't know how to calm down and articulate what was wrong. It felt too complicated to explain and the words wouldn't come. All I knew for sure was that I wanted it all to stop and the problem to be made right.

In the three years since my first diagnosis, I had never reacted to anything this badly. You say I've got pancreatic cancer? Oh good, I can stop my despised daily workout routine.

You say I might live longer if you slice me open all the way down the front of my body and take out a bunch of my organs? Well, okay, let's try it.

Now you say I've got COPD too? Oh, for god's sake. Well, tell me how to deal with it and let's move on.

It's not that I took any of these events anywhere near lightly – only that I am good at identifying what cannot be changed, sorting out options and getting on with the more interesting parts of life.

But not this time, and for something that should have been so much simpler than those real-life examples above.

There I was at the table in my dining room mid-morning on Monday, full of frustration, salty tears running down my face while stuttering out unrelated words and phrases to my hospice nurse on the other side of the table.

I will spare you the most boring details and just say that the discount on the gigantic co-pay for a drug I need and cannot otherwise afford, is expiring in August. I was able to get the discount a year ago due to the kind intervention of a pharmacist.

When, on Monday, my nurse called the pharmacy to discuss renewal of the discount, the person on the telephone insisted that the pharmacy had taken no part in the original arrangement for the discount, that it could have happened only if I had personally spoken with my Medicare Part D provider.

That's just not true. I was there. I know what happened.

My nurse's further call to a physician only complicated the issue and nothing was resolved.

Now that I'm back to my normal, uncrazed self, I think I know what really set off my meltdown. It was the lie from the person at the pharmacy, a lie she repeated at least once and maybe twice, word for word. The certainty in her voice was infuriating and unnerving. (Remind you of anyone?)

When you know for sure, when you can see with your own eyes that the sky is blue and someone insists it is red, your mind can splinter. Or go numb. Or, if you are an old woman like me who needs a specific drug to breathe, you just lose it. Or, at least, I did.

There was a time – for most of my adult life - when I had a talent for sorting out malfunctions, getting past petty bureaucrats and charming intransigent helpers into fixing a problem. I took some pride in being able to do those things.

Now I'm old. I'm tired. Sometimes my body hurts in various places. I lack the patience I once had for cajoling people into doing what they are paid to do. And after my Monday meltdown, I lost the rest of the day, exhausted from the frustration and the anxiety.

Eventually this will work out but there is a larger issue: it's not nice to treat an old woman this way, and I don't mean just me. I'm not unique – if it happens to me, it happens to thousands of other people. It shouldn't be this hard to talk over a prescription problem and track down the right person to help deal with it.

And many of all those other people stuck in a communication snakepit don't have a nurse as dedicated as mine.

UPDATE: Monday afternoon, that nurse spent two hours of her own time on many phone calls tracking down someone who understood the problem and could deal with it. She phoned me Monday evening to let me know that I should hear within three days whether I have been approved for a continued discount.

At 9AM Tuesday, I received the approval via a telephone message from the Part D insurer. My relief knows no bounds and I am deeply impressed with my nurse on several levels. The terrible thing is that in our new coronavirus world I cannot hug her.

Comments

I've learned throughout my 60s that, if I say Blue and the younger person says Red, I might as well go along because nobody is going to believe the older woman over the young person. Thank you for letting me see how wrong it is to just go along.
I'm so sorry you had to deal with this. Our health care system is shameful.

Two months away from Medicare, I am dealing with a similarly frustrating situation concerning my coverage by the Marketplace during a serious emergency surgery earlier this year. I'm glad your situation worked out. I am a former healthcare practitioner and the entire systeme is definitely NOT cosumer friendly.

There is no doubt in my mind that your nurse felt your hugs, anyway. Otherwise, you are exactly right.

There are times I wish I had a gun and I'm glad I don't because I think I would use it in the kind of situation you just described. You have a great person to assist you. Love and prayers for you.

I don't understand the particular link between this pharmacy person/business and the pharmaceutical company, but it is related to the health insurance cocktail of culprits. Everyone hates long phone waits and confrontation when tired and frustrated already. That's what insurance companies and all count on. It's been going on for so long it is accepted behavior in the healthcare industry IMO. They love people who just say ok and give up, but we need to be squeaky wheels, and employ advocates for us in our weaker moments.

Of course, not everyone has access to the help. I am so happy you have a team on your side. It's also good reason for people to not let their independence get in the way of accepting experienced help when offered. Kudos to your helpers.

We can't get healthcare for all soon enough.

When I first found your blog, you wrote about calling your cable company (you were in Maine) and they asked to speak to a different - younger - person as they didn't deal with older customers over the phone. That just unnerved me that they actually said that to you.
Keep on keeping on - Virtual hugs from Virginia.
Sounds like your hospice nurse is fabulous. How nice.

Oh Ronni, I am so glad things worked out for you. My first impression with reading your account is anger. Anger at a health system where you have to expend so much of your precious energy on such matters. I can't in good conscious even call what we have a "health system." Will we ever learn as Americans profit has no place in our caring realms?

Baby bomers are already being abused in the retirement homes, and the only way you baby bomers will escape this fate is by killing yourselves before you reach the stage of life where you are old and helpless.

You deserve this for destroying your own children's future. No one is coming to save you. Suicide is your only hope.

In times like these everyone needs an advocate. To get this far, I've had many.
Even yesterday.
Faith

Amanda Smith, you are cold and cruel!

Thank you for calling out what you heard, which was lies. I have encountered the same experiences during the years I was of AFDC (welfare) and was unable to work to support my children. Rather than perceive the experiences as being lied to (it really was hard to tell) I took it as stupidity. Each time this happened, I knew I had to keep persisting, talking to yet someone else until I found the person who knew how the larger system worked and was able to offer the door through which to walk to get the help I needed. It took a lot of energy. I always wondered what I would do if, rather than my mobility, my speech had been affected. That fate left me cold with dread. My voice, being able to articulate loud and clear, what was needed, was so powerful, even if many I had to get past were unable to make sense of what I was asking. Yes, melt downs, yes, rage, yes, feeling distraught, are all appropriate. Take care...

Ronni - I'm sorry you had to go through that and I'm glad your nurse was able to help you.

Amanda Smith is a TROLL (someone who makes intentionally inflammatory, rude, or upsetting statements online to elicit strong emotional responses in people or to steer the conversation off-topic). No trolls wanted here!

So glad you had a good advocate to go to bat for you, though I've run into the same switcheroo at pharmacy lately. Maybe they are afraid they'll lose their jobs if they don't say the "new line of bull sht" or something else. But it is unconscionable to us elders. I'm glad your story did have a happy ending, and hope you're feeling more at peace today.

Is Amanda Smith serious? What a comment...

Amanda, get a life, gurl!

Ronnie, I'm glad the outcome was good, and so very sorry the struggle was what it was. Your salty tears, I'm sure were helpful, and I'm glad you had a loving witness.
And also a hard working one.............an advocate! Yes!

Whoo, baby, these are hard times, hard times, lately I could break down and cry 2 or 3 times a day, just knowing of all the hard times hitting humans and other beings so hard. And sometimes, it's a good thing to just let those tears role, and reboot.
Blessings for all.

Sometimes we can only hope for an angel to help us, and your nurse is one. May she reap many rewards on earth for such humanity and professionalism.

Ronni, glad it was ironed out for you. I never was a very patient person and don't suffer fools gladly. Undergoing all kinds of testing and lab work from Feb. to June of this year has brought home once again how difficult it is to deal w/ the medical system. Now I'm on a daily teeny pill to shrink a tumor. The drug may impact my already poor old bones & I broke a molar Sunday evening. To the dentist yesterday whereby he just looked at my tooth & then informed me he couldn't do anything yesterday. I have an appt. to return on the 23rd for a cap? At my age & w/ my present battle, I need a cap? I'm calling a new dentist this afternoon to see if they will take care of an extraction. It's a molar way, way to the rear, and I don't want to invest more money in a cap. Too bad I didn't have time to think it through while at the dentist so I could tell him I wouldn't return. Think I was just shocked that he wasn't going to take care of it yesterday. Met my oncologist once and then when scheduling a return appt. was told he was "out for the summer." What? Grumble, mumble. I'm actually laughing at it as I re-read this. It just takes a bit of time to regain my sense of humor about it all. All the best to you from me - as you know - in your continuing journey. Hugs & luv.

You ran into a bully, and the bully uses any weapon at her disposal. The most chickens--t one is lying about facts. I am thrilled you got your discount, that you are cared for by persons of integrity. If only you could go to the pharmacy yourself and fill your rx (with discount) from this bully.

Any of us can receive this treatment and as you get older you are assumed to be scatterbrained and forgetful. Be forearmed. Get directives or decisions in writing and keep those where you can find them, in files. HMOs, IRS, any of the big bureaucracies are misery if you can't produce receipts, letters, and such.

Bumps in the road--sometimes potholes! Glad you persevered and had an advocate. Hoping today, and all your days, are smoother traveling.

More and more systems in society ( government for one) have evolved...devolved really, to a "gaslighting" protocol to handle dealing with the public. Under trained associates with no incentive to really help end up not caring and just tell you something to make their own jobs easier. In health care this is awful and dangerous. It happens to more than the older of us but we are perceived as such easier targets so get more of this abuse.
What ever happened to the Gray Panthers? It's time to start that up again.
Just checked. The original organization dissolved in 2015. There is a new one and they have a facebook page. I think I'll check them out.
Jackie M

Your meltdown was long over due. I had someone lie to me too, about something not nearly important as your medication. It feels awful to know the liar is using our ages to cover up something THEY did or didn't do. Karma will take care of them someday.

You are very fortunate to have been hooked up with a concerned advocate before this happened. I suspect that you would have navigated this on your own if you had to, but I'm glad that wasn't the case. Reserve your strength and energies for other things. We will all likely cross many mountains yet before we reach the shining sea!

Oh, Ronni, I hope you can sense our hugs! Thank heaven you had someone dedicated who helped you resolve the issue in your favor! We are holding you in our hearts!

Yes, it is a challenge to keep one's cool. Older people are treated the same as they used to be, it's just that there are more of us and we are more outspoken. I worked for Sears (yes, it was a place to start with a real "future" in the sixties) in the hardware department. I, as a young salesman, had no patience for the older customer. Why, after 30 years couldn't they get a necessary part? I certainly understand now. Like you, Ronni, I no longer have the patience especially if the supplier is incompetent or refuses to actually investigate the problem. I, too, have spent hours on the phone with insurance companies (Tri-Care for Life, GEHA, Medicare, etc.) to resolve problems that some "fat finger" created on a keyboard deep in the corporate bowels. The older I get the more frustrating and infuriating this new world gets! B

Please delete Amanda Smith from this group.

Sorry for the ongoing roller coaster tsouris. Willing you the strength to keep to keeping on as long as you wish.

Having a guide through the forest is the best way to get through this kind of nonsense. So glad you have good hospice care who will be the guide and whack down the vines to get you through.

Hate meltdowns, but always seem to feel stronger after a recovery period.
Yay great nurse person! Good people are a blessing.
Don't block 'ole Amanda Smith, we need comic relief.
Read in Wapo today that Chris Buckley has written a hilarious novel titled "Make Russia great again". Planning to get the Audible version. If we don't laugh, we cry. Sending poz vibes west.

I’m grateful for you that it was resolved, but please know that many of us would have contributed (without you ever asking, and probably with you resisting vehemently) to make sure you get anything you need. We love you.

I am so sorry and angered that you are having to deal with this kind of stupid red tape at this time in your life. My husband has also had a somewhat similar experience - a medication he needs, no longer covered by Medicare, but there was a coupon offered by his physician to reduce the cost. Only one pharmacy indicated they would accept it - Walgreens - so he switched his Rx there, and upon picking up the med, they said, no, they wouldn't accept the coupon after all. He spent a few hours on the phone trying to figure out what was going on, and finally decided it wasn't worth it. So - he's been paying out of pocket. It's not more than we can afford, but it is a lot. After three months, suddenly Medicare has decided to cover it - a letter came out of the blue. Good news, but it was a stupid hassle. I'm glad your situation has been resolved.

We have a contentious medical system that requires sick people to do battle when they are least able.

So sorry you had to go through this. Thank heavens for a determined advocate.

Be well.

Who is so dumb as to blame the Boomers for this mess we are in....my first son, age 59 is Boomer, and so is my younger sister, age 72.

Ronni, I hope this mess will work out to your advantage. I had to wait 5 weeks beyond when my Prolia injection was due. When I phoned to check mid April if my next day appt. would be honored I was told they would get back to me. I had received 3 previous injections over the past 18 months, one every 6 months, always furnished by the Endocrinologist. Not now.
It was a mess, only the male nurse attempted to help me. I finally got through to the doctor and she reluctantly agreed to phone the Specialty med part of my prescription coverage, part D. The helpful supervisor at my Aetna medicare advantage plan was the one who told me I was covered for it, but needed the doctor's referral.

I had the prescription mailed to my house b/c did not trust the Dr. office to handle it..they have confused me with another patient with similar birthday....It's the twilight zone in that place...the nurse practitioner had the nerve to tell me she did "behind the scenes work" after I got the injection and was leaving, to which I replied, "This was inexcusable"!!
and marched out. I will get a new Endocrinologist.
After I

Sorry I left a few words dangling in my hurry to finish before I was cut off...my situation is nowhere near as serious as yours, Ronni. I get the Prolia for my osteoporosis. I cut this long saga short as there was no need to go into the rude receptionist or the wrong information I was given about how the drugstore near me could get the medication. So sorry you have to struggle with this and so glad you have someone to help. I had about given up, and glad I only had to pay my 10% $120. for the medication.

It seems like when I was young...I am 65...no one listened to you because yo were too young...then a few years of "legitimacy" in my late 30s, early 40's then boom....I was getting too old...Might be an exaggeration...but that is the way it feels. Ronnie, no one should ever question your mental capacity or memory. You are more "with it" on a bad day than the rest of us on a good day. Hang in there. Love your honesty and wit. Love you from Texas.

Amanda, you showed your ignorance: It's "boomers" not "bomers". Why don't you find a blog that is more to your own distorted view of the world?

My first thought as I began to read today's blog was to start a Go Fund Me page to help Ronnie pay for her medications. Still an option in the future.

Just heard on NPR that the Supreme Court has allowed businesses to deny birth control services on religious and moral grounds. Another travesty of this president and the health care system. Is it November yet?

Covid-19 has brought out the best and worst in people. I had an encounter at the grocery store last week when I asked the man behind me at the check out to please step back a few feet and his response was, "Don't fuck with me lady!" I didn't respond because these days we need to be frightened of being physically attacked.

I'm happy you have a wonderful hospice nurse. Keep on fighting the "establishment" Ronnie.

Of course, I meant Ronni NOT Ronnie. My apologies.

Ronnie, I am glad all is sorted out. It is outrageous to have to endure this.

Amanda needs to learn manners and grow some perspective. There are better ways to change the system. Is this all she can offer ? What's she doing to make the world a better place?

Cyber hugs, Ronnie,

Karin

Horrifying to hear the problems you have with healthcare and medications. In both countries I’ve lived in (Australia and UK) there is a national health service (socialist medicine to many in the US 🙄). Unfortunately both countries have conservative (republican) governments who are trying to introduce the American system. I have stage 4 metastatic cancer and receive very good, free care including medications and scans as well as hospital stays.
Previously I had problems, 10 years ago, with my pancreas and was on a forum where most of the people were in the US and the amount they were having to pay for medication was unbelievable. Why do people vote against their own self interests? People who are ill don’t need that extra burden of stress.

Ronni,

I have had a few meltdowns in my time——for exactly the same reasons. I am grateful that (s0 far) I have the mental capacity to fight with insurance companies, the pharmacy techs, the rude receptionists and on-and-on. I am also grateful that you have a wonderful advocate.

Huge (virtual ) hugs to you AND the advocate !

Amanda, just wait ..you will be old one day. And, honey, Karma is a bitch.

Ronni, so sorry this happened. Like many here, I cannot wait for a simpler, fairer and safer system--and it probably won't happen before I'm out of the building. But it's a very worthy goal. Our "system" has degenerated into layers upon layers of this cruel, pointless crap. The people who claim to "love" their insurance will sadly learn this, one by one, as they too are bullied over the phone and at the pharmacy counter.

So glad your nurse came through. Peace now friend.

So glad it finally worked out to get the med you need at a price you can (more or less) afford. Sometimes it ISN'T what it is and we need to fight for what should be.

IF Amanda is real (not a troll), I can't imagine living in such a hateful way. She must be a very bitter and unhappy person, especially now when so many are advocating for MORE social justice.

Forget Amanda. She is a teen-aged boy who would be showing us his private parts if we had video.

Jeez, Ronni. How maddening! I am so glad you were able to cry!! That's got to have helped. (And while ageism may have had something to do with the pharmacy's lie, I think that kind of shameful falsehood is par for the course with many business people in today's world where everything is for sale, and job security is nonexistent. I'm guessing younger people get lied to about this kind of thing too, and the pharmacy counts on its authority to win.)

SOO glad the nurse went to bat for you!!!

Oh, Ronni, so sorry you had to go thru that and thank goodness for that wonderful nurse! You know, I think not only are meltdowns sometimes understandable but they are also righteous: some years back when I was having cancer treatment, the dr. asked if I'd be interested in participating in a study that gave radiation treatment in a newer way. I said yes if my health ins. co. would agree to pay. Ins. co. agreed; dr.'s office & I both got copies of the ins. co's. agreement. I started the treatment; here comes a letter from ins. co. saying "Guess what! We've decided we're not going to pay after all! Have a nice day!" I go in for my next treatment & showed the nurse the rejection letter. The nurse says, "Oh, don't worry at all about that. We got a copy of that too and Dr. got right on the phone to the health ins. co., went all the way up to the CEO of the co. and gave 'em what for and we've got the approval; here's a copy of what we got." And she looks around to make sure nobody's listening, leans forward grinning and says, "You know, I didn't even know Dr. even knew some of those 4-letter words she used with the CEO! But she got it taken care of." Thank goodness for the good hardworking peeps in the medical profession.

Glad you finally got it sorted; but you're right, it shouldn't be that hard.

Right back atcha, Amanda Smith. You, too, will get old, unless you kill yourself soon.

What a moron.

Ronni, I completely understand your reactions to those people. Been there, done that. I'm so glad you had that nurse backing you! I think insurance companies deserve a special place in hell. They feast on the suffering.

As if being in Hospice care wasn't enough to deal with! What a society we live in.

Your experience zeroes in on exactly what so infuriates me with how some professionals function in the health care arena when patients are the most vulnerable. Your reaction is totally understandable. Fortunately, there are also those healthcare workers like your hospice nurse who go the extra miles to confront the malfunctions, generally with positive outcomes as, hopefully, you have.

While not the critical situation which you face, I certainly made it my part of my responsibility to be a patient advocate as warranted when I worked, then for my mother and now for myself. Even now as I seek medical information that has received no response for several weeks I have lost my patience, become angry and frustrated. I think to myself how many people must face trying to resolve such issues as you describe that need all their time and energy to focus on their health and not have to be trying to overcome bureaucratic issues? This just should not be !

Infuriating! I'm so sorry you had that unneeded stress. Yes, you have ticked off more than anyone should have to adapt to with an open mind and acceptance that is superhuman...and, so understandable that something would come along to put you over. I can only think that the melt down was not only necessary but healthy, that your system needed to melt down, crying, exasperation and more....you are loved and you are amazing.

Oh, gosh. I am so sorry you had to suffer through this idiocy. And so grateful you had someone to help get it favorably resolved.

...and, when I think of all we are all digesting daily in regards to absurdity, out right lies and dangerous incompetence, on top of (well, you know the list)...the only sane response is to rage or cry.

It’s too difficult to advocate for oneself when vulnerable. I’ve advocated for others in a medical setting but when I was in hospital last year I was ignored, not informed as to why another procedure was ordered and couldn’t get medications on time. So yes I had a meltdown and phoned a friend (retired RN) to ask what to do. She told me to ask for the charge nurse which I did then I dumped everything on her. She got most of it sorted out. If I was younger I would have a new career as a health care advocate because we all need one. I glad your hospice nurse got everything straightened out.

I'm also sick of seeing the comments from the troll "Amanda Smith!!" I hope you will block comments from "her" going forward. Some kind of horrible bot or troll. Pathetic.

I share your frustration and your relief at getting it sorted out. I have no patience for dealing with people anymore - especially regarding medical, insurance and tax problems. You are lucky to have an advocate!!

And there was a full moon. The nurse saved the day - well more than that. Mitzvah-doer is she!

The issue is treatment of women and old women in particular. The rude and cruel treatment. Sometimes I try to say those doing bad behavior are just having a bad day.But to repeatedly lie! That was simply wrong.

Are pharmacists or their assistants trained as more docs are in communication skills?

What an unnecessary experience. So glad the heroine saved the meds and day!

This is infuriating! I’m sorry you and anyone has to deal with this.

Such a wonderful hospice nurse. I am so sorry this happened. I've often wondered who will help those aging alone when the s--t hits the fan. This happens far too often. I am so glad you have this woman to help navigate our decrepit medical system. And Joan is right, old people often are at the back of the line in it. I'm no Pollyanna either but when I got negative health news from my doc I went out and sat in my car and cried for half an hour. It really helped. Sending you love. Celia

Lying and bigotry of any kind are among my top unacceptable behaviors and stances. And, I have zero tolerance for them and no longer make or accept excuses and coverups. To err is human someone once said... and to apologize, make amends, and forgive ... divine, indeed. (Not seeking unattainable, unsustainable, and, really, unnecessary perfection. A loser’s racket. Been there, been that.) Crying is usually my greatest stress buster and I wish I cried more often. Clears the channels clogged with hurt feelings, rage turned inward, dangers to health. I have been loving you and this community since forever. Your nurse and health team, I consider part of the TGB community-family. Hugging you, now, dear Ronni!

You said the magic words. "It's not nice to treat old people this way." I wish more people understood that. Most of us will only have a 10 to 15 year period hen we need the compassion of others before we shuffle off, why can't they give us that?

"Your call is important to us, please wait for the next..." Liar, liar pants on fire.

You are so right, Ronni! I’m so grateful for health care professionals like your hospice nurse. And you are such a champion for fair treatment and an exemplar of courage and wisdom.

I'm so sorry to hear this. I'm glad it was resolved. Your nurse is terrific!

I mean no disrespect to anyone working in the medical industry. I met many angels. I also met people who have absolutely no business working in healthcare or with the elderly.

I recently had an experience with someone who made a mistake which caused my mistake. This individual would not admit they made a mistake. They put the events they caused by their error entirely on me. It was infuriating. I still think about it. I am trying to forgive. I am forgiving her for being an a##hole.

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