NOTE: Part 1 of this series may be found here: http://www.dailykos.com/...
Part 2 here: http://www.dailykos.com/...
and Part 3 here: http://www.dailykos.com/...
My mother's memorial service was this past Saturday. It went well I thought. I can't be sure. I was numb. Not from any self-medication, mind you, but I suppose just as a naturally occurring defense mechanism.
As I looked down at my notes resting on the pulpit, I had as close to an out of body experience as I've ever had. Those weren't my hands in front of me. I don't know whose they were. Certainly not mine. My nails are never that clean.
But whoever those hands belonged to, they were holding my notes where my eyes could see them, so I was grateful for that.
There were some disappointing no-shows, but also the wonderful surprise of seeing people we didn't expect to make it show up.
The promised thunderstorms held off, and all the out of state relatives, who had so generously deigned to give their mother/grandmother, and their brother/uncle and sister/aunt a whole day of their time (I warned you there'd be bitterness) were all able to make it to the service on time.
Now, on to some more observations from my experiences caring for my mother these past seven years.
Medicare. The individuals who made Medicare a reality in this country deserve praise and glory for all eternity. Those who seek to weaken and destroy it deserve eternity in damnation.
Given that, there are things that anyone who has a loved one approaching Medicare age, or who may be approaching it themselves, should know.
The first thing that I think folks should know, because I suspect it isn't known to most people who don't have personal experience with the program, is that Medicare can leave a person still owing a very large amount of money to their healthcare providers.
Every time my mother was hospitalized, her co-payment, even for just an overnight stay, was $900. And there were years where she was hospitalized a half dozen times or more. Do the math, and try to see how an old woman and her caretaker son trying to survive on a monthly Social Security check that isn't much more than that can make it work.
Stints in a nursing home for rehab are very expensive too. The first twenty days of a benefit period carry no co-payment at all. After that, the next eighty days carry a co-payment that I believe is now around $135 per day. Again, do the math. Eighty days at $135 a day.
Of course, after the 100 day benefit period runs out you are SOL. That's when your loved one starts self-paying, doing the "spend down" until they qualify for Medicaid.
Fortunately my mother never reached that point. After sixty days at home, a new 100 day benefit period appears. Fall one day shy, or even visit the ER during that time, and you're fucked. You start that "sixty day clock" as we came to call it all over again. Each time our mother returned home my sisters and I started the sixty day countdown. Sometimes she made it, sometimes she didn't.
When she came home on Dec. 2nd of last year, she'd used up 94 days out of her 100 day benefit period. But she sailed past the sixty days, remaining home for over seven months, so that when she went in for rehab following her final hospitalization she was covered.
So, what do you do about these big co-pays? Well, if you're like a lot of folks, you can't afford to do much of anything. In my mother's case, she and my father had, years before, joined what I believe was then called a "Medicare Plus" plan. Today they are called "Medicare Advantage" plans, and yes, they have been unfairly subsidized by the federal government and under the healthcare reform act are beginning to face a leveling playing field. I'm all for that.
But I will tell you that I came to be grateful that my mother had one. It cost her extra each month, an additional premium that she paid on top of the money that was already being automatically deducted by the government from her Social Security check for Medicare.
And there were times when I wondered why we were paying this money. Was there really any "advantage" to this coverage? Despite it being through one of the major health insurance players in the region, I was regularly confronted by office staff who didn't know what I was talking about. "It's an HMO?" they'd ask. "It's a supplement?" "No," I'd reply, then quote the words printed on her ID card. "It's a private fee for service plan that pays according to Medicare's schedule."
Her nursing home co-pay was reduced to eighty-some dollars a day. But more significantly, the plan had an annual out of pocket cap of $5,000. To my surprise, this year the out of pocket cap was lowered to $3,250. Some costs don't count towards the cap, such as drug co-payments and the cost of the premiums themselves. But it saved my mother many thousands of dollars the past few years of her life.
There is indeed waste in Medicare. And private insurance too, I've no doubt.
As I mentioned in the diary before this one, my mother was beset by frequent urinary tract infections the last half-dozen years of her life. On several occasions she was still being visited by a home healthcare nurse from her previous hospitalization or stint in rehab. I'll write more on this wonderful benefit later.
But I became very, very good at recognizing when my Mom had a UTI. And if she had a home healthcare nurse visiting I'd have her phone my mother's doctor and get an order for a urinalysis. I'd collect the urine and the nurse would either drop it off at the lab or phone a courier who would come pick it up.
The results always confirmed my suspicions. But would the doctor then admit my mother to a hospital room so that she could begin her IV antibiotic therapy? No, of course not.
Each time I had to drag my poor mother through six or seven hours in the meat-locker cold emergency room, where another urinalysis would confirm what we'd already learned from the urine collected two days before at home. My mother's doctor blamed Medicare, and I'd love it if one of this community's doctors could tell me if he was being truthful or feeding me a line of crap. "If I admit her and those lab numbers come in below X parts per million then I've got to answer a lot of tough questions" he would say. The cost of each of these trips to the ER, to confirm what we already had laboratory evidence of, was thousands and thousands of dollars. Penny wise and pound foolish.
During one of my mother's hospitalizations for a UTI a urologist was called in for a consult. He suspected a prolapsed bladder, a not uncommon thing to find in an elderly woman. It would prevent her bladder from fully emptying, promoting the growth of bacteria. "We could do a CT scan," he encouraged. "And if we confirm she has a prolapsed bladder, what do we do then?" I asked.
"Well, there are surgeries to correct it," he said, but continued "We wouldn't want to put someone your mother's age and health condition through them." "So, what would be the point in doing the CT scan?" I asked him. He seemed to literally deflate before my eyes, unable to come up with one reason. I'd just cost him his "commission."
There is indeed waste on the providers' part. One afternoon, about a year and a half after my father's death, when my mother was doing really, really well and was still living by herself, I arrived to have her tell me "I hurt my back."
She'd been invited to a neighbor's house for a picnic, and it had been requested that she bring her justifiably famous German potato salad. She'd gone to fetch her favorite cast iron skillet to fry up the bacon, and the unholy trinity of bending/lifting/twisting had done a number on her.
She took it easy for a day or two, but by then the pain was so bad I took her to the ER. She received what could only quite generously be called a cursory examination. "It's just a strain," the doctor assured us. "Take her home and give her Tylenol."
Several days later she was back in the ER, in even greater agony. This time they took an X-ray. Again they told us she had merely strained her back. Once again Tylenol was the answer.
A week later she was back in the ER, in tears from the pain. This time they took a CT scan. "Your mother has a broken back," the doctor told my local sister and me. "A fractured vertebra. It often doesn't show up on regular X-rays." Our hearts sank. Surely there was nothing that could be done. She faced the rest of her life in pain, perhaps in some sort of body brace.
"No, not at all," the doctor assured us. "We do what's called a vertebroplasty. We get her under a real-time X-ray machine and use a big needle to inject thick crazy glue into the fracture. It restores the vertebra to its proper height, or at least close enough to it to decompress the nerve. And it stabilizes it so that it doesn't fracture any further."
It proved to be everything the doctor said. A truly marvelous procedure. One that is very common in elderly osteoporotic women, because vertebral stress fractures are very common in them.
But my mother had been put through two weeks of unnecessary pain, and a substantial amount of money had been pissed away on three times the number of ER visits that should have been necessary. Yes, I know that CT scans expose a person to a high level of radiation. More than a conventional X-ray. But the conventional X-ray was worthless in this case (and proved worthless a couple of years later when another vertebra fractured,) and she wound up having the X-ray's radiation in addition to the CT scans' dosage.
Choose your hospital carefully. I write this tongue planted firmly in cheek. If your loved one's primary way of being hospitalized is via the ER (see above,) your choice of hospital is probably going to be limited. The paramedics are going to take them to the closest one.
But in my mother's case, that was a community hospital. A not for profit. Oh, they make profits alright, but they don't pay taxes on them, nor do they pay property taxes.
In exchange for this largesse they are required to provided discounted medical care to needy members of their community.
Each time my Mom was hospitalized (although more often than not the hospitalizations occurred close enough to one another that I'd wait until the bills for several stays had accumulated,) I contacted the facility's billing department and requested an application for charity care.
Here's where I use that word "advocate" again. Filling out these applications was quite a task. Photocopies were made of every utility bill. The garbage collection bill. Property tax statements. Monthly drug co-payments. Her Social Security benefit statement and Medicare Advantage premium. Etc. Etc. Etc. It was a lot of work. Many hours. With photocopies, my cover letter, and the application, it was like mailing back a small phone book (certified mail, return receipt requested thankyouverymuch.)
And each time, every time, although it would take months to process, the hospital did the right thing. I think it helped that my state has a pretty darned good Attorney General (wonder of wonders, she's a Democrat,)who has been hounding the state's community hospitals for failing to meet their obligations.
But once again - and I say this not to pat myself on the back but to continue to hammer home a point I have made before and will continue to make as long as I continue this series - any elderly and ailing American who doesn't have an advocate working on their behalf is in a very precarious position.
Caring for an elderly loved one is a continuous balancing act. You're constantly weighing risks and benefits. You don't want their blood pressure too high, but if they're overmedicated there's a good chance their BP will plunge when they stand up and they could fall.
You want them to stay hydrated, and the elderly tend to not drink nearly enough if left to their own "thirst meter." My mother basically turned into a camel in her later years, and had to be constantly prodded. "Drink and pee, Mom, drink and pee. In one end and out the other," I'd exhort her, to try to ward off another UTI.
But a few years ago my Mom was hospitalized with startlingly low sodium levels. A few points lower, we were told, and she would have gone into a coma. She was diagnosed with SIADH, Syndrome of Insufficient Anti Diuretic Hormone. The kidney doctor warned against her becoming overhydrated. "Don't let her drink too much water," he warned. I told him that she usually had a glass of Gatorade next to her. "Gatorade's okay," he said, "But stay away from plain water." As her BP was good, she became one of the world's few elderly individuals to actually be encouraged to salt her food. She also took two, 1 gram salt tablets each day, and her sodium level stayed where it should be.
Another balancing act: Waste management. The excretory tract of the elderly can be weak and slow moving. Opiates make this even worse. Fortunately my mother never needed any pain medication stronger than Tylenol (aspirin being contraindicated because of her blood thinner RX.) And impacted stool can be a very serious, and potentially dangerous situation. But go too far in the other direction and you've got fecal incontinence, feces up the vagina, and "Hello, e-coli urinary tract infection."
Healthcare professionals often view the world through very narrow lenses. I found this true of some doctors, but to especially be the case with support staff, particularly various therapists. There isn't a lot of holistic attitude to be found.
Invite a respiratory therapist in, and they'll advise ameliorating your loved one's post-nasal drip induced nighttime cough by tilting the back of her bed up. Point out to them that the wound care nurse advised against this very position because it increases the weight bearing down on the buttocks, and you'll likely get a stunned look from someone whose training apparently never taught them that the neckbone is in fact connected to the (beat) tailbone.
Well, that's enough for now, I think. I get nosebleeds if I stand up on my soapbox too long.
Please be encouraged to contribute your own experiences and observations in the comment section. I am still hoping to hear from some of the doctors in this community especially.