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.
Here’s a quick story of how my Sandwich Generation moment (sort of) intersected with another’s.
My kids’ last elementary school science night was a few days ago. The first session we attended was devoted to blood – specifically, what’s in it (plasma, hemoglobin, platelets and 3 types of white cells, by the way). That we focused on blood was not the important part. The element that matters in this story is the presenter, who was a student’s hemaologist grandfather. I found his style and manner of speaking ideal. Unfortunately, my sensibilities and those of a 7 year-old differ slightly, so I suspect many of them were bored.
The subject matter caught my attention, but even more so was the way his son behaved. At least I think it had to be his son. His impatience with his father’s imperfect presentation was palpable. He corrected and interrupted him frequently. HIs tone is one I can only describe as a cross between exasperation and embarrassment.
His father took it well and kept plugging away at his program. But it got me thinking.
Fast forward to the next day when I found myself in my dad’s community room attempting to troubleshoot network connectivity problems with the overmatched and harried assistant executive director (Terry) responsible for the “independent living” wing where my father lives. My dad’s latest classical music presentation had been hamstrung by technical problems that could have been caused by a variety of factors, so Terry and I were trying to troubleshoot. Or, rather, I had on my nerd jacket and trying to decipher the problem while Terry told me stories.
One that he told me, after which he asked for my help, was about the a recent community trip to CVS (estimated distance: 1.5 miles) on the group bus. Apparently my father had been a participant on that trip, which I know from speaking with him is one of his favorite outings of the week. The fact that he does not have to shlep all the way out there (remember – estimated distance: 1.5 miles) never ceases to amaze him. It makes him feel like royalty.
On that trip, Terry told me, as if this physical challenge of my father’s was news to me, that the smell from his incontinence had permeated the bus sufficiently that other residents had complained about it… and could I please speak to him about doing something about it?
Now, I know this issue is a chronic one for him. It has been since 2004 when he started taking Lasix, which is his congestive heart failure (CHF) medication. Basically, CHF is caused by excessive fluid, so the drug drains it. There is only one way it can drain. You get the idea.
I took him to Mass General last month for a C Diff check, and all I can say is that I know what Terry was talking about. Plus, the weather that night ranged from really cold to “are you kidding me”, so opening the car window for very long presented its own set of challenges. I usually give him non-stop grief about this issue. My brother does too. Don’t get my sister-in-law started on it.
So what did he say when I brought up Terry’s comment to him? Nothing. Because I didn’t tell him.
I figure that part of my role, aside from parceling out medication and checking that nothing scary has taken root in the refrigerator, is to take his side whenever possible, even when he is wrong. In this case, he was almost certainly in the wrong. But so what? He already does his best with this. I have done everything I can short of conferring with my brother and deciding that he’s not capable of making his own decisions about getting dressed. And aside from having to pick my battles, I feel like I have to give him credit for generally making pretty decent decisions, and for a generally improving trend of decision-making overall.
When I had showed up for our weekly dinner that night, he had put on a nice oxford shirt and dress pants just because I was coming over. This is a man who wore robes nearly non-stop just before and just after he moved here. That doesn’t happen anymore, and not because I continued to yell at him about it. He still has the capacity to self-correct, which if I devalue, makes everything (my brother’s and) my problem.
Back to the blood, which is how we started this. I don’t know if I would have reacted as the hematologist’s son did had this been in front of kids, even my kids. It is hard not to snap at parents. Maybe I would have. But I hope not. I hope that if my father had been up there talking about and showing off his lifelong passion for blood or anything else, I would have listened quickly, helped out politely, and looked on with a lot of pride.
Before I became a sandwich generation adult in earnest, my parents lived in New Jersey in the 1960’s era, faux-wood-walled split level in which I grew up. My mother handled everything, with my father mostly withdrawn and keeping to himself. It all changed one Saturday morning when she tripped over a carpet, fell and broke her hip. We didn’t know then that she’d be gone within 3 weeks, a victim of her own cascading health problems (and probably the medical profession, which threw a lot of medication and procedures at her without much regard for how taxing the cure was.)
What we did know is that my father was suddenly in the house by himself and we weren’t convinced he knew how to operate anything in the kitchen. Or pay the bills. Or clean up after himself. Or do laundry.
I lived in Massachusetts at the time and my brother Rob in California, but we both made trips back home to visit my mother in the hospital and my father at home. It was my first time dealing with sandwich generation issues, so called, and I admit: it overwhelmed me. I had also launched a business that had just started to go sideways (a polite professional euphemism for “poorly), which is a bad feeling in the best of times. This combination led to a series of sleepless, gnawed fingernails and emotional confrontations with anyone and everyone.
In a bizarre moment of clarity – in retrospect it’s easy to see the wheels coming off the car, but at the time, much more difficult – I made an appointment to speak with my Rabbi. What I thought I was going to talk to him about was honoring my father and mother while keeping the bonds with my wife and family. I sat on his couch, unburdening myself and waiting for scholarly wisdom to unlock once and for the all the secret of being in the middle of the proverbial slices of bread.
Instead, he looked at me, and said simply, “You’re going to need a lot more help.”
His advice, which I think of often almost 3 years later, was that if I couldn’t take care of myself, there was no way I could take care of anyone else. You can’t be the first phone call for everything, he told me. I remember that metaphor most of all. Figure out how to get the basics taken care of so that you are doing for your parents and for your family what no one else can do.
I mention this particular piece of wisdom – which actually originates from Maimonides in the 12th century — because, while I forget it often, I always try to come back to it. It is difficult because my father relies on my brother and me now for so many of the basics. He is in a senior community here in MA that ranges from independent living (where he is now) all the way up to a skilled nursing facility. But my father has never been independent. He’s never done laundry, changed sheets, cleaned dishes, emptied his own trash, ordered his own supplies (kitchen, bathroom, office, or otherwise), set up his own cellphone, or dealt with health insurance. He’s also never admitted weakness. I suppose few of us have.
In other words, he is someone who is used to being waited on. And at the same time, until not long after my mother died, he had a Depression-era sensibility to paying for help, meaning that he got it either free or not at all. In his mind, it was my mother’s job, and then it became my job or my brother’s job, to do these things for him.
I would like to report that we had one huge confrontation over this and then he saw the wisdom of my position. That would be fiction though. What it looks more like is erosion, where he continuously asks me to perform tasks that I’ve told him that I’m not going to do and that he could do himself, and over time, he figures out that I’m just not going to do it. (Another hallmark of the sandwich generation: always having to calculate, consciously or otherwise, what we will and won’t do for any given person in our lives. It is exhausting). I focus instead on how to eliminate the task, or how to get additional help.
If you have an elderly parent living alone in a situation where you know that they can’t perform everything themselves, and you have the option, get more help. Tell your parent that it’s not for them, it’s for you. This line of argument is hard to argue with, and also has the virtue of being true. Call HomeInstead or a home care agency. Find other people to check in on them – and definitely get to know their neighbors if you don’t already. Call their town’s local senior center; most towns have one since seniors are very profitable residents who pay property without consuming public schools. Get their church or synagogue involved. Can they Skype or use a webcam? Talk to them that way when you can – that way you can see if they are hanging out in their pajamas all day, a sure sign of depression and withdrawing from the world. Above all, do not feel guilty about not always being the first phone call. It’s probably not sustainable, will wear you down, and then will make you unable to respond in force when you really need to.
But how do you get them to move closer to you or to a community where they have a lot more help? More on that another time.
I have read many blogs over the years and I have to admit, they make me feel like I am probably a little too late to have a compelling hook. I live in suburbia, so can’t wax heroic about the challenges of cooking for 365 straight days in a tiny urban kitchen with one burner and an underpowered oven. I have 10 year-old children and a mortgage, so I am not about to trek through the Orient, across the Sahara, all the while really journeying inside my own mind on a self-indulgent journey to its center. I have completed only 2 short triathlons, so I lack the credibility required to speak of discipline, of commitment, of transcending my limitations. I drink beer, so while I know about its self-medicating qualities, I can’t hold your attention my encyclopedic knowledge of different brewing styles. Maybe someday.
What I can write about, with authority, is juggling. Specifically, about being caught between two things that each pull me nearly irresistibly in opposite directions. You know it as “sandwich generation”. This typically refers to newly middle-aged adults who wake up one day looking after children and elderly parents, all the while fearing that the struggle to accomplish both is futile. And, somewhere in the back of their minds, they remember that they are married and would like to stay that way. And, they probably have to earn a living. And, they have made commitments to their community – their neighborhood, their hockey team, or in my case, their synagogue. All of this happens at the precise moment that their bodies start their slow physical declines, suddenly needing more running just to arrive at the same cardiovascular destination.
This is now my story.
My father contracted a dangerous stomach infection in June. He had been living on his own in the same split-level where I grew up in Lawrenceville, New Jersey for the past 2 years. He got sick on his 89th birthday and when we couldn’t reach him for more than 2 days, we knew that something had gone wrong. A neighbor told us that he was at Princeton Medical Center, and I figured that it would a quick recovery from food poisoning or something equally innocuous. Only when I traveled down there and spoke with the doctors – who, as anyone who has dealt with a sick relative long-distance can tell you, are impossible to reach over the phone – did I find out that his malady, the dreaded C Diff infection, has a 50% mortality rate at his age.
I carry with me the memory of standing by the hallway window and calling my brother to tell him to buy a plane ticket, right now, because we didn’t know what was going to happen.
My father is a man who survived the Nazis, then the Communists, and then colon cancer, and even eating his own cooking in recipes he learned after age 87, so we should not have been surprised that he beat the 50/50 odds and left the hospital 10 days later. But before he cheated death, he wrestled with it, and as a son, nothing drives mortality home like watching a father do this. I would run my fingers through his hair as he looked up at me from his hospital bed, and I could not help but see myself.
More on that experience later.
Over the course of the next 2 months, my brother and I made many trips to Princeton, first to the hospital, then to the rehab center, and finally to pack him up and move him to the Boston area to live near me. And now he is here.
So, my story is about wishing for and getting one more meal at Legal Seafood with my father. It is about best practices for making work conference calls from hospital waiting rooms. It is about a rainy night on a cellphone with a dying battery at a compounding pharmacy debating a prior authorization for an expensive Tier V antibiotic with my dad’s Medicare Part D provider. (Side note: it also is about waking up that morning not knowing what a compounding pharmacy, prior authorization, Tier V antibiotic or Medicare Part D provider were). It is about sitting on the porch with my wife, who is crying because she fears that the life I’d had this past summer was going to swallow our marriage and our limited time with our children. And, it is about the clarity of selflessly loving a (sometimes selfish) parent.
Until I start writing regularly, I can’t predict what else it will be about. But I hope you recognize enough of your own story in mine to keep reading and maybe contribute as well.