This morning, while it’s still dark here, we’re driving north up the road to my local community hospital to have my left hip replaced.
My husband, Jose, is taking three weeks off to stay home with me, (blessedly able to have that much paid time off and willing to nursemaid me), and a friend from our church has offered to coordinate meals and drives when he needs a break.
She, too, will be with us as she recently had bypass surgery and knows the drill all too well.
I’ve tried for weeks to wrap my head around the idea that a foreign object — the ceramic head made (je suis ravie!) in France, the rest in Warsaw, Indiana — will become part of my body.
In the United States, where 47 million people suffer (as I do) from arthritis and millions are obese or overweight (guilty), 200,000 of these procedures are done every year. It’s hardly unusual. But that doesn’t make it any less scary. My hip was destroyed, ironically, by the drug given to me in May 2010 to reduce severe inflammation, producing AVN. Beware!
The sweetie needed some tests, and one of them involved a CAT scan with a dye injection. (Looks like he’s OK, thank heaven — only a kidney stone. I shouldn’t say only, as everyone who’s had one or knows someone who has says it is excruciating.)
I’m the one who’s usually lying on the gurney/MRI platform/X-ray table. We’ve been back and forth to our small local community hospital so many times in the past decade — thankfully, for nothing serious — we’re on a first-name basis with the doctor who works the overnight shift at the ER. On one of our last visits, he asked: “So, whose turn is it now?”
It was my turn, then, with a fever of almost 104 and a spot on my lung so dark and ominous he drew the curtain and said it might be lung cancer. The sweetie, a photographer by trade, asked to see the films, as he can read negatives with the skill of a radiologist, even if he doesn’t know what he’s looking at.
It turned out to be only pneumonia, but it still meant three days on an IV, sharing a room with a 95-year-old who startled awake at midnight, sat on the edge of my bed and tried to pull out her tubes. I coughed, as one does with that disease, so hard my body ached from exhaustion; I wrote an essay about it for The New York Times.
This time it was my turn to watch the phlebotomist wheel in her cart and overhear her explaining to him how his body would react to the contrast dye. I kept him company as long as I could. In our 11 years together, I’d never seen him lying flat inside a diagnostic machine, grateful for this and shocked at the sight.
I sat and waited, staring at the lavender wall trim and burgundy cupboards and a cheerful British print on the opposite wall, aware for the first time how soothing it all was and how much I needed it to be so.
My last ER visit was January 2009, the beginning of a five-month odyssey to figure out my painful/arthritic/inflamed left hip — I was in so much pain I could barely walk and I do remember admiring the handsome design of our shiny new ER.
When I’m scared, and I admit to not loving going anywhere near that hospital by now (three orthopedic surgeries since 2000, a hip replacement my next, and more than five times to the ER, for everything from a broken finger to a mild concussion the sweetie incurred in a biking mishap) I do not want to be soothed or distracted by television. Old copies of People don’t do it for me either.
The sweetie, a devout Buddhist, did a lot of deep breathing to stay calm.
I’ve spent a fair bit of time around hospitals, thanks to my mother’s various illnesses, which included a mastectomy and a brain tumor (both of which, 10 years apart) she survived. I’ve seen her in hospitals from London to Sechelt, BC, and have learned to make medical staff crazy when necessary with my direct questions and insistence on information.
We’re glad we have a good hospital nearby, deeply grateful for good health insurance and generally good health, and knowing we can get there within a 10-minute drive.
I’ve been facing this sudden reality for about the past two months. My divorced mother, 76, who lives in a very far away city in Canada — I am just north of New York City — now must move into a nursing home. I have someone there sharing power of attorney with me, but even so it has become an unpaid, draining, overwhelming, full-time job demanding almost daily decisions, all of them with major consequences.
None of which are anything I have ever faced before or have a frame of reference for.
I’m the only child.
If you have not yet entered this specific obstacle course, a few things you need to think about:
Does your parent have a will? Do you know where it is and who is the executor?
Have they, in advance, designated a power of attorney?
Do they, or you, have a written inventory of all their belongings and which they might want to keep when they have to trade a home for one room?
What do they want to do with all ephemera — photos, letters, documents? Have you or they sorted through it and identified what is important or of sentimental value? Identified who’s who in the photos?
Who will handle your parent’s affairs financially?
Do they have long-term care insurance? (Do you?)
Have you discussed any of this with your parent?
Do you have anyone, like a geriatric care manager, to help you if you are trying to deal with all of this from a distance?
Here’s what we’ve faced:
She fell in the hospital, breaking her hip in the emergency room
Surgery to repair her hip and months of rehab and physical therapy to regain strength and mobility
Another fall in the hospital, which protested there was no way they could prevent yet another one
Bowel surgery and a colostomy
She has COPD and heart problems as a result
She has early, for now, mild dementia and trouble with short-term memory
The learning curve is vertical!
These are just some of the many people I’ve spoken to in the past three months:
Two nurses, doctors (at least four, so far), physical therapist, occupational therapist, nursing home staff at four homes while seeking a suitable and available bed, hospital social worker, hospital risk manager, attorney, realtor, notary for the buyers for her apartment; auction house coming to appraise and sell her things; Salvation army for picking up the rest, movers to move her into the nursing home, airline (for my flight); car rental (for my visit), UPS (for packing and shipping back here whatever I can take or keep), bank staff to try and arrange handling of her finances…
The only thing keeping me sane is knowing many other women also going through this hell or who have already gone through it, and who kindly offer compassion, humor and advice.
It is a maelstrom of grief, fear, sadness, confusion, anger, frustration, loss. And the cost is staggering — $6,000 a month for one room. Yes, a nursing home room is definitely much cheaper elsewhere, but she is not physically able to move and emotionally would not want to as her friends are in this city.
I like this story a lot, from The New York Times. It’s about a young man, Alex Carno, whose leg was shattered by a bullet who met a suburban Mom when he was in rehab:
With dizzying speed, the pace of his life slowed to a crawl. It now takes patience no teenager has to move to the door with a walker, to wait for a visit from a friend, to wait for someone to call someone who could arrange for the right paperwork.
But once or twice a week the phone rings or the apartment ringer sounds, and a woman with no official title or longstanding relationship to Alex tries to move his life into fast-forward.
Jenny Goldstock Wright met Alex in the recreation room of a Westchester rehabilitation hospital where her grandfather, 95, was recovering from a stroke. It came out that the two men — one young, one old — had both grown up in Harlem, three blocks away and 80 years apart. “It was like he was a neighbor or something,” Alex said.
Bonds form fast in hospitals: Families see each other’s pain and fear, and they understand it, from fierce firsthand experience.
“I just felt instantly he was a good kid, and lonely and scared,” said Ms. Goldstock Wright, a 39-year-old philanthropic adviser who lives in Katonah, N.Y. She doesn’t know all the details of Alex’s injury — he told her he had been shot over a Marmot winter jacket he was wearing — or even much about his past life. (The police said the case was still under investigation.)
“I don’t know, and I don’t care,” she said. “The system’s treating him like a throwaway. He deserves better.”
Real compassion demands action. It’s so much easier to write a check to charity — or not, or to ignore or turn away from another’s needs, especially if they don’t look or talk or behave like us or live in the same neighborhood.
I was a Big Sister for a while, to a 13-year-old girl also being raised by her grandmother in a poor and chaotic household. It’s not easy to enter the life of someone so much younger, make a commitment to them, let them count on you and know you have to keep showing up because they need you. It’s important and valuable and teaches both people a lot about themselves. But it’s challenging and for that reason alone, many people shy away from such intimacy.
I also live in Westchester, whose affluence can be stifling and smug, an insular world of Range Rovers and enormous mansions.
You know, you should really never say anything out loud that might tempt the fates.
I was up at my local community hospital 10 minutes north for my routine mammo last week, and joked with a friend working at the front desk as a volunteer about the sexy, new high-tech ER they recently unveiled. “I wonder when I’ll see it,” I laughed.
Last night at midnight, unable to move, stand or walk without excruciating lower back pain — tried to lift something banal, too heavy — it was time to visit. Private exam rooms! Beautiful frosted glass at the check-in desk, staff who, (I hate to say I love a hospital but I do really like this hospital) always introduce themselves to you by name. It was nice as a hospital can be, and once more made me deeply grateful my partner has good insurance and had been able to keep the job that provides it.
Now I’m doped to the gills so will try to keep posting, as lucidly and often as my fuzzy little brain allows.
I have to travel to Connecticut tomorrow for a New York Times assignment with a firm and fixed deadline, and a paycheck we need.
Maybe I’ll take my walker. That’s my kind of reporting…
A friend of mine works for a major New York City hospital, very close to someone in a very senior role. In this position, this person (whose gender I’m keeping deliberately vague) has a clear view of some issues in the healthcare debate most of us don’t. I hadn’t seen this person in a while and asked how work was going — after all, every news report suggests that healthcare and education are booming, even in the recession, unable to find and hire all the help they need. If anyone’s job is safe and secure, this person’s must be.
Not true, they said. This year is OK, they told me, but next year might not be. As the recession drags on, this major, well-known and respected hospital is losing patients who are losing their jobs — and with them — their health insurance. The dominoes are falling in so many directions it’s hard to keep track.
As more Americans lose their jobs this hospital is losing patients, i.e. income. Without sufficient income, the hospital will likely have to cut services or staff. So this friend of mine might lose their job, too.
When patients don’t have insurance, they can go to an emergency room for care and get whatever the hospital decides it can afford to supply them. So, in two ways, the recession is draining income from hospitals: the formerly insured who can’t afford optimal care and the uninsured or indigent who take whatever they can get, a growing tab that hospitals legally must pick up. They’re getting hammered financially from two directions.
What strikes me about the healthcare “debate” is how little we still understand the minutiae, and how eager some stakeholders are that we do not. Those of us outside the system — and there are so many players, many with competing interests inside the system — can’t even ask all the tough, smart, informed questions because most of us, however intelligent or educated, don’t even know what to ask. There is a real sense of urgency to get to answers, now, as President Obama has said there will be a new healthcare plan by the end of this year, only 5.5 months away.
And how much do you even understand, or trust, the answers we’re being given?
Not in the United States, where editorial and op-ed pages are currently bristling with competing ideas and fears. We’re facing more class warfare as the wealthy are asked to kick in more tax to pay for the rest of us. Those who have good health care benefits through their jobs don’t want those benefits taxed or messed with. Those who can’t even afford to see a doctor are desperate. The one-third of us who work freelance, temp, permalance or don’t have access to a subsidized group healthcare plan are paying through the nose for market-rate prices — one New Yorker I know is paying $1,200 a month for his family of four. He runs his own company in an industry that’s been hammered by the recession and has already had to lay off many of his long-time, full-time employees. Do you have a spare $1,200 a month right now? Who does?