If you are a caregiver, you have a person like this in your life too. She means well and is a good person. Probably loves her kids and has many redeeming qualities. Connected to you by blood and the memory of many family events, some of which you even recall as not completely awkward and uncomfortable. Someone who has come through for you in the past.
But not always – because this person can be counted on occasionally to give your loved one spectacularly bad advice.
In my case, this advice was related to taking medication. Because apparently doctors are all trying to make money by prescribing antibiotics like Dificid, which is the pill that currently separates my father from the runaway symptoms of the stomach bacterial infection C Diff. Also, once the symptoms are gone, you don’t need to take more pills. After all, if I have a headache, and I take aspirin, and the headache goes away, I don’t take more aspirin, right? I mean, clearly doctors are just trying to make money. Everyone knows that.
My father relayed this advice that he’d heard to me and I went ballistic. Sometimes I do this. Generally my style of persuasion is finesse, not brute force. As a sandwich generation person, I try not to go to the yelling mode with either my father or my kids, but sometimes there is no choice. Plus, I was angry. My father has a penchant for making his own medical decisions, most of which consist of trying to second-guess which prescriptions he should take that week. I have worked really, really hard to talk him out of this habit and put the medication process on auto-pilot. It has worked. This is better for everyone. And then now this
So I somewhat (but only somewhat) more gently pointed out that this infection had come back many times, that he should stick with the plan, and this relative should stick with what she really knows a lot about, whatever that is. Etc. Then he said, “Peterkem (Hungarian for ‘my Peter’, sort of a term of endearment), of course I am listening to you.” Almost as if to say, “I know that this advice makes no sense. I am not a dummy.”
Problem solved. Until the next spectacularly bad advice floats over the transom.
Here is a screen shot my father took from a Skype session I had with him last night.
You can see my daughter Sophie in the shot – she was talking to him (this was about an hour after my last post about his C-Diff returning and feeling a distinct sense of whatever the opposite of the relief is). You can see in the picture how happy they both are about it and the connection that’s formed.
Sometimes you can employ one side of the sandwich, so to speak, to help you with the other. That is, the symptom is also the cure.
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.
Just an average Sunday schedule for the Sandwich Generation — you’ve had these too. It looks like this:
8:45 – 10am: watch some Olympics with the kids, but mostly make sure that they are prepped for today’s swim meet and have done their Hebrew School homework. Also had to jam in a few work emails.
10:30am-11am: review Hebrew School homework, figure out what on earth they are going to have for lunch, and negotiate over who is driving them where and when
11:30am (ish) – 2:30pm (ish): go over to my father’s apartment. We were supposed to watch a movie, have lunch and go through photo albums. My main agenda item is to see what I need to need to do now that his C-Diff infection clearly is back. This leaves a mess (enough said there). So, although he tells me that it’s not too bad and the apartment-facing camera appears to confirm that, I definitely have to check, especially the bed. Luckliy I have spare sets of everything now (not the case when he first moved up here). Which reminds me that we’ll need to get antiobiotics into him before I head away on vacation next Friday, preferably by Wednesday so that I can leave knowing that they worked well enough to regain control. Also that reminds me that his other prescriptions need to be refilled. And that we will need to make an appointment at Mass General to get the fecal transplant procedure set up.
2:30pm (ish) – 6:30pm (ish): Kids’ swim meet.
After 6:30pm: home. Need to figure out dinner, as well as lunch setup for the week.
At least it’s a day where I can sort of plan ahead. Glass half full.
I’m certain that in the course of writing this Sandwich Generation blog that I’ll be waxing poetic about my father’s various heroics in certain situations and how much I admire him. However, that’s not going to happen today. Instead, I want to highlight his terrible taste in books.
Let me start with his obsession with W.E.B. Griffin, and in the particular, the Brotherhood of War series. I know he is obsessed because he bought the whole series (The Lieutenants, The Captains, the Majors, the Colonels, etc. etc.) in paperback multiple times. For someone who grew up in Depression-era Hungary and used to keep dead batteries in a drawer in his desk, because “you never know”, this is quite a statement.
Not content with that, he insisted that I buy him the series again for his Kindle. Which I did.
He also recommended that I read it.
The last book he tried this with was “The Panther” by Nelson Demille. Horrendous. It’s the story of a married couple in the CIA (I think) who is sent to Saudi Arabia (maybe) to kill or capture a terrorist mastermind called the Panther (probably). Hundreds of pages meander on with no action but plenty of cringeworthy puns about sex and violence. Every chapter ends with some variation on “…so we settled in and waited for happen. Maybe. Or maybe not.” The book is filled with barely disguised racism, celebrates ignorance, and there are pages where Demille just mailed it in and lifted passages from his other books, which he then passes off as reminiscences.
You would think that I would have absorbed the lessons from this particular experience. But I am a caregiver son who is grateful to have a father who still reads and recommends books almost at age 90, so I shrugged it off. So he loaned me one of his 3 copies of “The Lieutenants”, and I started reading.
It’s 90 minutes of my life I will never get back.
Ostensibly, it’s about U.S. Army lieutenants in World War II, which is a topic my father knows nearly everything about. But that’s actually not what it’s about. It’s mostly about American army officers’ post-war exploits in post-war occupied Germany, how terrible the Soviets were, and how the Germans actually really weren’t that bad. They were perfect gentlemen in the way they treated these guys when they were POWs, for example. W.E.B. Griffin says so.
One particular prison camp scene where the American and Nazi officers have a leisurely drink together was my tip-off that I was not going to dig this book. To make matters worse, the characters — many of them, each less likable than the first — run around talking about “niggers” in the Army and showing surprise when a troop of “fried chicken eaters” turn out to be decent soliders.
I guess I have 3 points. The first is that just because your parent thinks you will like something, you might not. I know now to approach any book my father recommends with a lot more caution. Apparently, even unconditional love has limits.
The second is that his book recommendations remind me that my father is a product of his era, and like the rest of us, fulls of imperfections large and small. A good man, I believe, but a flawed one just the same. If I am really honest about it, he has always been a little bit racist. Demille’s humor really appeals to him, I’m sure. He has had a complicated relationship with relationships. Of course he’d rather read puns about stereotypically dysfunctional ones. On certain occasions, he’s suggested that America’s best foreign policy strategy would be to kill everyone in a particular country, because what’s the difference — it’s really the oil we want. Books celebrating war just help reinforce that reaction.
It’s probably a 21st century sensibility to see the irony of someone who survived World War II being so enthralled by a book that whitewashes the Germans — I know. But since it is 2014, I’m not sure what other lens to apply. And when you are a caregiver for someone, it is easy to forget that this person who so needs you is actually a real and imperfect human being.
The third and most uplifting lesson is that he wants to connect. Wanting that connection with his kids was not really his thing in my childhood, and I suppose if I could have had it then vs. now, I might have taken it then. I don’t know. I have to make the best of what I have right now — as in today.
Postscript: I returned the Lieutenants, and placed it next to its other 2 green-colored-cover brothers on his shelf. I told him what I thought of it. He nodded, apologized a little, and then moved on to the next favor. Caregiver tech support never ends.
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.