Saying Goodbye to My Hospital Bed Feels Good

I feel like a little kid graduating from a crib to a big girl bed.

After 12-and-a-half years of sleeping in a hospital bed in our family room, I have moved on. To a regular bed in an actual bedroom.

I am elated and proud. And a tiny bit wary.

The hospital bed has been disassembled and soon will be picked up by trash collectors. Taking its place are a couple of new couches -- replacing the sectional we owned for nearly 30 years.

It’s a big win for the world of home decorating and for me. I’ve been sleeping in the out-in-the-open bed for a long, long time.

When I first got sick in 2005, doctors were unable to diagnose me for months. They suspected I had cancer, but they couldn’t find the specific cells (after numerous scans and blood tests, a splenectomy, grueling bone marrow biopsies and spinal taps). Meanwhile, I got sicker and sicker, lost more and more neurological function. I lost my speech, the sight in one eye and the use of one, then the other leg.

So I was in my home hospital bed months before I was hospitalized. I was too weak to climb the stairs to my bedroom.

The bed has been my home for more than sleeping for years. I am cancer-free (YAY!), but the non-Hodgkins lymphoma (eventually located after a brain biopsy) has left me disabled and weak and in nearly constant pain. Multiple compression fractures in my back make it impossible for me to sit up, walk or stand for long periods of time.

The only thing that makes the pain go away is to lie down flat. I would use my hospital bed many, many times a day for this. And for the occasional nap.

 A few years ago, a friend took a fall and broke her ankle. While recovering, she could not go back to her condominium because it required going up stairs. She was looking for a place to stay after spending time in a convalescent facility, but she hesitated about asking friends to use their home. “It’s not like they can put a hospital bed in their living room.”

Yes, I told her. They can.

Well-worn Bunny on my in-home hospital bed

On one hand, it was embarrassing to have a hospital bed in our family room. Other times, it was a godsend. I learned to get over the embarrassment, as I had to do to with other aspects of my sickness. 

When I first got out of the hospital after spending 4-and-half-months in institutions’ hospital beds, it was wonderful to have one at home. My own sheets, my own TV, a button to raise the head or foot of the bed, railings to prevent me from falling out and to help me sit up.

In those early months, my home nurse and my family caregivers used it as leverage to lift me into a wheelchair or a commode, and as a place to bathe and feed me. My physical therapist used it as a beginning site for my exercises, slowly getting my muscles to work again.

It was my anchor for celebrations. My husband, so happy I was home after many months away, threw a neighborhood party for me in June 2006. I was thin, weak, barely hungry and horizontal for most of the evening, but I loved seeing so many people. I was ecstatic I was home. 

On my 50th birthday that same year, dear friends and family came to help celebrate my milestone. I managed to open presents, cut the cake (and eat it, too) while in bed.

At smaller get-togethers over the years, I would try to sit up and be sociable, but would have to lie flat after awhile, so I wouldn’t be in pain. As I gradually gained strength, the home nurse and physical therapist quit visiting. More than a year of intense chemotherapy, involving a week in the hospital and three at home, made me appreciate the ease of sleeping and recovering in the bed. Then, when the cancer returned and I underwent a bone marrow transplant, the bed helped as I again slowly regained my strength.

Later, the bed proved invaluable for my two separate carpal tunnel surgeries and months of recovery when I couldn’t use my hand to grip my walker. The button to raise myself up helped lift me to use my walker with a special elbow-steering attachment. 

But there were downsides to sleeping in an open room all the time. Every time someone came to the lower level of our home late at night or early in the morning, I was awakened.

And the two cats we had over the years considered me part of the furniture. Day or night first Allie (RIP) and then Albert would jump onto the covers, snuggle up at or on my  feet, or sit on my chest and breathe in my face or give me a quick couple of licks to make sure I was awake.

When my bed’s motor finally gave out a few months ago, it was stuck in the nearly-flat position.  This was a great angle for my back, but bad for getting up or seeing the TV, particularly with Albert on my chest. Medical equipment companies said they would not repair it but would replace it. At a cost of about $2,000 with insurance, I declined. (When the bed was first sent it to me, it was on a rental basis. After a year or so, it was declared ours. We never paid a cent for it, because our medical bills routinely exceeded the maximum insurance limits.)

We instead decided to buy a sofa set that was easier to get in and out of than our previous one. And I could use a relocated lower bed in the adjoining room to sleep. (I couldn’t get in the previous one due to its height -- and the fact that steroids use during my sickness left me with osteoporosis and 2-and-a-half inches shorter.)

New furniture!

Bunny -- my cancer buddy who was a fixture on the hospital bed -- found a new home in the regular bed in the bedroom. 

This new arrangement is working out fine. I’m definitely getting more sleep, uninterrupted. I’m adapting with a bit of difficulty to not having the bars on the side -- which I depended on to get up or turn in bed. And I’ve moved my rolling tray table -- which at times was piled high with medications or supplies -- into the downstairs bedroom so the area looks less like a MASH unit. I lie down on the new love seat when I need some flat time or move to the bedroom for long spells of back relief. 

Our family room looks like a family room, for the first time in more than a dozen years. But I’ve learned that a family room isn’t just what’s pictured in furniture ads. It’s the good, bad and the ugly things that happen there. It’s life and how you adapt to it.

Goodbye, hospital bed. I could not have done it without you.

California Cracks Down on Disabled Parking Cheaters (Finally!)

California laws changed the first of the year to make it more difficult to obtain and renew disabled parking placards.

Hallelujah.

I wish I could jump for joy. But I can’t because I’m disabled. And I don’t have the time to even try. I’m too busy looking for a handicapped parking space while sneering at able-bodied folks using the spots.

Often they are just shoppers or restaurant patrons, but these dastardly motorists include Uber drivers, construction workers, delivery people and armored truck drivers (all of whom have blocked some of the handicapped spots where I have tried to park).

Since cancer left me disabled nearly 13 years ago, I’ve been growling at cheaters and ranting about them in my blog and social media. I’ve appealed directly to my local law enforcement officers, praised the occasional sting operation and investigated ways to report the crimes (There's nothing really effective. Parking Mobility has hopeful merits but it's not for me, when I'm driving alone.)

And now, on the heels of a scathing state audit that showed California’s administration of the disabled plates and placard system embarrassingly sloppy, the state implemented a law January 1 that begins to address the problem.

I think the law should have been harsher (given the magnitude of disabled parking fraud), but it’s a start.

Consider some horrifying statistics from the audit:

— As of June 30, 2016, DMV records showed there were 26,000 drivers aged 100 and above with active placards or plates. That same year, there were 8,000 centenarians in the state. 

— Additionally, some 35,000 dead people still had active placards/plates. 

— Of 2.9 million placard/plate owners in the state (about one in 10 drivers), auditors estimate that in a three -year-period, 1.1 million placards/plates were issued without proper medical documentation (required to obtain a card).

— During that same time, 260,000 applications were approved with questionable medical signatures.

The problem, the audit concluded, was multifold, but boiled down  to improper tracking and enforcement and lax rules that let cheaters get away with using placards they shouldn’t have.

The new law will put some tighter rules in place: making changes to the application process to require more detailed verification about what qualifies the person for a placard, a change in the automatic renewal process for permanent placard holders, and a limit on the number of replacement cards a holder can receive.

Previously, if you get the blue permanent placard, it would be good for two years. At the end of that period, a new one just appears in your mailbox, free of charge. As I wrote in a previous blog post, this just invites misuse. 

The new law mandates a renewal process requiring applicants to fill out a notice every six years, beginning with the placards expiring in 2023.

It's a step in the right direction, but not strict (or quick) enough. Why not require an occasional recertification by a doctor?  Some might find that burdensome, but I’m pretty sure disabled people see a medical professional fairly often, so it would be no big deal to get another signature every four or six years.

Another aspect of the new law is a limit on how many replacement placards a person could get. Before, you could get a replacement if yours was lost, stolen or damaged by filling out a form and giving it to the DMV. In nearly 14 years of using disabled placards, I only remember one time when I had to get a replacement (and I am constantly dropping and losing things). But the audit found with no limitations, people abused that option. Big surprise.

Nine people had requested and received 16 or more placards over a three-year-period and two had applied for and received 20 or more.

Now, the new law limits you to four replacement placards in a two-year period, without having to get a medical certification. Again, I don’t think this strict enough, but at least it’s something.

Other audit recommendations the DMV is adopting are improving record-keeping, matching its files with death records, working toward a system where a traffic enforcement officer can check a database of registered placard owners, and scheduling, monitoring and publicizing more stings.

All good ideas. 

And there’s another one that the DMV pledged to implement: a public awareness campaign (similar to the seat belt and texting ones) alerting the public that it’s NOT OK to park in a disabled spot or to use a placard illegally.

Seems like common sense, I know. But unfortunately, there are lots of folks out there who use someone else’s card, use them after their loved ones die, sell them on the internet or visit doctors who promise to sign a disabled plate certification for a fee. And that doesn’t include the flagrant violators who think it’s OK to park in the spots “just for a minute” (like to use an outdoor Redbox movie dispenser or pick up take-out food) or think their work (construction, Uber driving or delivery) trumps the law. 

While the enhanced rules and plans won’t solve all the violations I see on a regular basis, it has to help. With better scrutiny of the application process, an emphasis on improving enforcement and a public awareness campaign, maybe — just maybe — people who regularly break the disabled parking laws will curb their inconsiderate, illegal behavior.

That would be great news to those of us who depend on those spaces.