Tag Archive | c-diff

#bummedoutedness

My father’s C Diff is back.  He had some stomach “issues” last week (yes, that’s a euphemism for problems that require bleach to fix), and after 2 days had pased, he finally let me know about them.  To be honest, I think the main reason he confessed is that I was standing in his apartment, and the signs are impossible to miss even with your eyes shut tight.  So, confronted with my presence in the living room, he decided to fill me in.  Such is the advantage of having him close by and visiting regularly, I suppose.

Anyway – the tests confirmed what we’d suspected after last week’s incidents.  Getting the results, as you might imagine, required several phone calls to chase them down since, as I now know, doctor’s offices labs don’t perform stool samples; they send them out.  

So now we are moving on to treatment.  This starts with another round of antiobiotics that’s going to run “only” $800 – luckily, we are into a new calendar year so that takes us out of the coverage donut hole as described here in my earlier post on Medicare Part D.  

When you get C Diff 6 times, it’s pretty obvious that drugs alone can’t kill these bacteria, so alongside that, the accompanying protocol is what’s known as a fecal transplant.  Yes, it is what it sounds like.  

But augmenting your weakened stomach flora with healthy ones from another person’s gut is remarkably effective and, fortunately, not as yucky as you think.  Generally, it can be a non-surgical outpatient procedure using a GI tube.  Plus, we connected with the rocket scientist gastro-enterologist at Mass General Hospital during a time of my father’s seemingly perfect health back in December, so we are prepared.  And he’s generally feeling fine, with his symptoms under control and a high energy level despite not having Dificid yet.  So, all in all, I have great cause for optimism.

And yet — I’m experiencing a palpable sense of what I can only define as “bummed-out-ed-ness.” (soon to be a trending hashtag on Twitter).  I am.  I honestly expected to be past this thing.  I had repurposed the brain cells I’d targeted at C-Diff-related-thinking into more productive purposes.  I had mentally said goodbye and good luck to Dr. Jenny Sauk, the aforementioned rocket scientist gastro-enterologist at Mass General Hospital.  I allowed myself to luxuriate in the thought of a future free of conjuring the emotional energy required to demonstrate a can-do spirit, even though down deep lives the nagging feeling that this particular disease (a) wants to kill him and (b) isn’t going to take no for an answer.  

In a strange way, I am relying on him for some degree of emotional sustenance.  After all, this is a man who survived the Nazis, the Communists, colon cancer, and so far, this thing.  I suppose as caregivers, we have to acknowledge a symbiotic relationship; our parent’s willingness to fight on reinforces our strength to help them fight on.  The sandwich generation piece of this is that our children’s willingness to learn reinforces our strength to teach them.  In either case, if either side withdraws their energy, we need to be ready to feed it from our own reserves.  My reserves are high right now.  But I must confess that I had let down my guard against having to tap them again so soon.

In other words – I’m experiencing #bummedoutedness.  Look for it on a Twitter feed near you. 

Medicare Part D meets Kung Pao Chicken – A Cautionary Tale

If you are a caregiver and familiar with the administrative horror show that is Medicare Part D, you can save yourself the 10 minutes you would ordinarily spend on this space.  If you are not, you will be glad you invested the time, because inevitably, you will find yourself fighting with an insurance company while racing the clock.  Trust me, you want to avoid learning this stuff on the fly because those 2 things just go together.

On their 65th birthdays, seniors in the U.S. get access to Medicare.  It’s actually a few different programs, which vary from great to “huh?”  The great part is Part A, which is basically comprehensive medical insurance that helps cover inpatient care in hospitals, as well as skilled nursing facility, hospice, and home health care.  Then there’s Part B, which pays for services (like lab tests, surgeries, and doctor visits) and supplies (like wheelchairs and walkers) considered medically necessary to treat a disease or condition.  It also helps pay for lift recliners and a variety of other stuff that is advertised on cable channels during showings of old movies.  Smart marketing.

Ideally, your parent has supplemental coverage on top of Medicare.  This is extra insurance that covers things that Medicare won’t under Parts A, B and D.  Especially for Part D.

The big gap in Medicare until about 10 years ago was in prescription drug coverage.  While you were in the hospital, medication is covered, but the minute you busted out (more on this in another post), you were on the hook.  Along came the mid-2000’s Republican Congress looking to cement elderly voters as leaning GOP, and Medicare Part D was born.

Part D should be better than it is.  It’s totally run by third-party insurance companies so is not the single payer model that Medicare is.  Sometimes these are the same carriers who have your separate long-term care insurance policy.  Sometimes your father knows the difference.  Most time he doesn’t, can’t explain it to you, and stashed the policy information deep in a drawer somewhere.  I’m just saying.  Plus it’s different in every state, so when you move, it can’t move with you.

When my father was discharged from the rehab center where he spent almost a month recuperating after his C-Diff-inspired hospital stay, his Vancomycin regimen became our responsibility.  Like most Americans, I have spent a decent part of my adult life on antibiotics, so when I got the prescription from his rehab center medical group, it seemed like a lay-up.  I even placed an order for takeout Chinese food from my dad’s favorite place near the CVS.

It was a muggy, rainy night in New Jersey and after placing our order and informing the nice man behind the counter that I’d be back in 15 minutes, I went into CVS holding the prescription.

“OK, I found the medication,” the pharmacist told me.  “But do you know that this medication is $3,000?”

“What?  How can that be?”

“Well, it’s a Level 5 drug and the doctor didn’t get a Prior Authorization .  Also, the prescription is for liquid but we only have capsules.  For liquid you need to go to a compounding pharmacy.”

I understood none of this.  That morning I had woken up naively believing that springing my father from rehab would be a good idea.

It tuns out that a compounding pharmacy is one that mixes medications from certain compounds in a variety of forms.  Good enough.  So eventually I got into my dad’s car and drove to the nearest compounding pharmacy, which was in a low rent strip center in Hamilton, NJ.  To find it, I had to rely on Google Maps on my cellphone, which drained the battery to nearly, but not quite zero.  There I told the pharmacist my tale of woe.  He looked up the medication.  Still a Level 5 drug.  Still no prior authorization.  Still $3,000.

He was able to figure out for me who I should call (AARP Insurance, my dad’s supplemental carrier), what information I needed, and what tactics I should use to overcome the inevitable denial that was coming (“tell them he’ll end up back in the hospital without it,” he said).

He also let me borrow the phone at the counter because of my aforementioned cellphone battery issues.  This worked great until I’d been on the phone for more than 30 minutes, after which point he and the other staff members kept reminding me impatiently that I’d taken up one of the only 2 phone lines in the store.  After 45 minutes, they told me that I had to get off.  I honestly thought I was closing in on success, so kept pushing them off.  (I was wrong, but didn’t know it).

After an hour, a woman behind the counter hung up my call, and then as I freaked out because I (wrongly) was convinced that I was about to break through, denied that she had done it.

If you are an experienced caregiver, you know this story.  You have grown accustomed to feelings of powerlessness.  Whether dealing with advancing age, health conditions, or insurance bureaucracies, you have come to accept feelings of inadequacy that stem from the situation, not from anything innate.  This was my first brush with it with my emotional guard down, and as I stood outside the compounding pharmacy on a muggy, rainy, August night, I was shocked.

As an added bonus, my cellphone battery had now completely drained, so I had no way of calling my father to explain why my 30 minute CVS errand was now taking almost 5 times as long.

The ending: I called the doctor’s office once I got home that night, and told their answering service that yes, it was an emergency even though their policies said that they couldn’t alert doctors for prescription questions.  I finally got the “Prior Authorization”, and got them to change the prescription to pills instead of capsules.  My father got his Vancomycin dose a few hours late, but at least it was the same day.  I wrote down all of the phone numbers, insurance plan numbers, etc. and put them into a document that my brother and I share online.  The medication didn’t cost $3000 — but the out-of-pocket was almost $800.   Part D coverage is different for different medication types at different “levels” based on which version of the plan you’ve signed up for.

In terms of dinner: the Chinese food was cold and soggy when I got it, and microwaving the Kung Pao Chicken did not help the situation much.  Then I drank 2 beers when I finally got home.  Strong ones.  Quickly.

The moral of the story is this: find out all of your parents’ Medicare Part D coverage information BEFORE you need to know it, and always remember that anything besides the standard medications likely will require additional authorizations that only your doctor can get.  And above all, do not order Chinese food before picking up complex medications.  You are tempting fate, and as caregiver, this almost never works.

Half Full (Part 1)

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Although I am in the midst of the intense experience called “caring for one’s parent”, I am also aware that in many ways, I am lucky to be in this situation at all.  C-Diff is not a disease that everyone survives, and certainly not everyone who is 89 years old and has 5 recurrences.  But then my father has been giving death the slip for a long time now.

And, whether by good fortune, planning, or both, I also can look at the situation of taking care of my father and feel like the glass is not just half full.  It might be closer to 2/3.  Here’s why I say this (and have been encouraged to say it):

  • My father’s mind isn’t just sharp.  It’s activated.  He reads newspapers online in multiple languages (Hungarian, German, English).  He leads a bi-weekly classical music seminar in his community where he streams YouTube videos over AppleTV to an ever-growing crowd.  He Skypes with my brother regularly.  He remembers nearly everything from his photo albums from 60 years ago.  This is big.  And he nearly always wants to learn.
  • My brother and I are a great partnership.  Yes, I am local and he is out in California, and yet I could not ask for a better partner.  Our relationship works now at a level that I could not have conceived of only a few years ago.  We work at this and communicate frequently, so this is not entirely luck.  Many siblings actually disagree about what to do and how to do it, which leads to paralysis, which then leads to bad situations persisting.  I learned a lot about partnerships in one of my businesses and have applied some of those lessons to being in this one.  But having a brother?  I can’t take credit for that.
  • Ditto for the support I get from my family.  It is easy to mess this up.  I have to balance things carefully (hence the title of this blog) to keep it that way, of course.
  • Jewish Family and Children’s Services have great support and programming for this exact situation.  We got connected with their Elder Experts service, a pricey (more on this later) but invaluable service that helped me find him a place to live, a local doctor, and connected me with Schecter Holocaust Services, which pays for some of his additional home care because he is a Holocaust survivor.  WIthout them, I probably would have moved him into an apartment, which likely would have been an unmitigated disaster.
  • We have sufficient financial means to pay for housing in a nice community near me, which is not easy since I live in Wellesley, MA, also known by its slightly derogatory nickname “Swellesley”.  He actually lives in Framingham, which is a lot cheaper than being here and still feels really swank for someone who grew up in Depression-era semi-rural Hungary.  He is in independent living, which is a lot cheaper than assisted living, which itself is cheaper than skilled nursing.  JF&CS pays for his weekly HomeInstead visits, which when they finally began liberated me from being his housekeeper.  And we have insurance which paid for his post-hospitalization stint in the rehab center (Medicare would have mostly dropped him after 20 days), so that didn’t wipe him out.  Some of these stemmed from good choices he or we made a long time ago, which I guess has some degree of foresight to it.  And a lot of it was luck.  My mother was a bit of a day-trader in her day, so not all of their financial decisions were good ones.  The decision to take out Medicare supplemental insurance definitely was.
  • We were selling his house in 2013, not 2010.  Total dumb luck.  People forget sometimes how the difference between financial success and failure is timing.  Never has this been more true than in the housing market in the past 5 years.  We hired a really good broker who specializes in this kind of transaction (vacant house from a senior owner who lived there for many years and then moved on), and she did a terrific job.  For our part, my brother and I were hyper-responsive to anything she asked us to do and let her drive the bus, so to speak.  Could she have sold the place so quickly and for such a good price in 2010?  Doubtful.

I could go on, but you get the idea.  Here is one last story to illustrate it.

When he was in the rehab center and I was shuttling back and forth to NJ from MA, my visits ranged from a few days to a few hours.  During my shortest visit, my father was in the physical therapy room and I was about to leave.  He had been there for over 2 weeks and physical recovery was coming slowly; he still had C-Diff, the power of which neither of us fully understood, so we didn’t know why he was so drained and tired all the time.  As I started to leave, he started to cry, which is very unusual for him.  He was convinced he was going to die in rehab as my mother had 2 years earlier.

I told him that we were destined to have 1 more bowl of clam chowder together at Legal Seafoods and that all he had to do was hang on long enough to make that happen, and the rest would take of itself.  When I said it to him, I believed it.  I don’t know why; I just did.  I told him it was written in the stars.

Several weeks later, after he left the rehab center, had survived 2 weeks on his own mostly alone in the house, moved to MA and gotten over the latest bout of C-Diff, we finally had that meal at Legal’s.  We were very fortunate to be there.  I am fortunate to be in this situation.  I know.