Showing posts with label paralysis. Show all posts
Showing posts with label paralysis. Show all posts

Monday, October 31, 2011

Hospital Roommate Etiquette: Rule Number Four

Here’s another in my suggested rules of hospital roommate etiquette. Rules one, two and three involved things patients can do to make life more comfortable for the roommates.
Rule number four expands the horizon a bit to include people who visit you.
Rule Number 4. Control your visitors.
Let me say that I loved having hospital visitors, in small doses and at the right time. During my ordeal fighting paralysis and cancer, there were weeks when I was so out of it, I didn’t know who was visiting me. There were times in the Intensive Care Unit when visitors were not allowed. And there were times when I felt too bad or what was happening to me was so embarrassing, I didn’t want any well-intentioned extra guests in my room.
But overall, I was deeply grateful to have visitors. Some patients never had a visitor. It broke my heart. 
But a few of my hospital roommates needed to rein in their guests.
One older woman had a crowd of people coming to see her. They would have to walk by me to get to her, glancing at me from the foot of my bed to walk to her area.
One day, they all came at once. I didn’t have any visitors at that time.
As more and more people filed by me, I thought of the routine at the circus when an unending stream of clowns emerge from a car.
This was the clown car in reverse. 
The room was set up so each patient had half of the space, separated by a curtain that had to be drawn to provide us some privacy and pulled back to allow us to see each other and speak.
It was closed the day the clowns were sent in. The curtain next to me begin to undulate as more and more visitors crammed by my neighbor’s bedside. Soon the fabric had moved about a foot into my space and a couple of men’s back sides could be seen nearly hitting my bed.
Just then, thankfully, a nurse came in and sternly told members of the crowd they needed to stay on their side of the room and could not infringe on my area. She showed them the imaginary line that they were not allowed to cross.
I think a few of them left, because the space couldn’t contain them. 

It’s not too much to ask for boundaries when you are confined to a bed and have a tiny living space to begin with. I was using a bedside commode, a toilet right by me, so it was particularly creepy to think of sitting on the pot with a host of strangers close enough to touch.
I learned that not only does the number of visitors matter, it’s what they do there that can also be incredibly rude.
I know patients are sick and might not feel like policing their guests, but please, people, have some common sense when it comes to your visitors.
I’ll never forget one roommate I had who had issues with her mom. The mother brought the patient’s little boy, Damien (real name), to visit. While the two women were hollering at each other, the toddler would run over to my area, stare at me and touch everything.
This incensed me because I was immunocompromised, highly susceptible to any type of germ. And Damien's mother in the next bed was suffering from a staph infection! 
I had one roommate whose grown brother was a germaphobe who would use the hand sanitizer mounted near our doorway about once every 10 minutes. I had no problem with that visitor quirk.
But this kid was running around hog wild and the grownups’ only possible use for the hand sanitizer was as a weapon they might dislodge and hurl. 
  
One young teenage girl I was roommates with brought her boyfriend, who was in his 40s, with her and made him her permanent visitor. He slept in the hospital bed with her, fully-clothed, for days on end. He hid when the meal server came by, then the patient would ask for a second meal (claiming she didn’t like the first) and he would emerge later and eat it.
And he would use the patients’ bathroom.

Major piece of advice: NEVER USE A PATIENT’S HOSPITAL BATHROOM. It is  for the patient. Hospitals provide public restrooms on every floor for visitors. Walk a few steps (it will feel good getting out of the room for a while) and visit those when you have to relieve yourselves.
Not only is cleanliness a factor when anybody off the street is using your bathroom, but there’s a dirty little secret about that toilet. It will likely have a “hat” in it.
A hat, a cute name for something weird, is a plastic thing the nurse sticks in the toilet to catch urine or feces of a patient. When the person fills it, she is not allowed to flush, but has to notify the next attendant who comes by so it can be noted and recorded in the charts.
It’s just another part of being sick that is humiliating. But while your hat is waiting to be emptied, you don’t want somebody’s significant other running in there to use the facilities.
Lastly, make sure your visitors are rested enough to come by. If they are too sleepy to interact with you, what’s the point of visiting? (This doesn’t apply to those kind souls who plan to stay all night with you.)
One roommate had a daytime visitor who walked into the room, set his cell phone on a table and fell into a deep sleep. The phone would ring every few minutes, blaring screechy, grating music over and over. He did not wake up.
The woman he was visiting was kind of out of it. Two other visitors thought it was amusing, said he needed his sleep and did nothing to wake him up or grab the phone.
Which made for a lovely afternoon for her roommate: me.

Saturday, August 20, 2011

My Favorite Daily Living Aids: Not Just For the Disabled

A sock thing
My favorite daily living aid -- something to assist disabled or handicapped people -- is not much to look at. White terry cloth on one side, black fabric on the other, two white straps stitched on.
But I consider it a miraculous invention, one that helps me not to feel so handicapped.
It’s what I call a sock-putter-onner and you’d never guess its function to look at it.
I would have never known about it if I hadn’t spent time in rehabilitation trying to make my way back from paralysis and brain cancer.
It’s one of three handicapped products that I learned about during my hospital and rehab stays that everyone should know about. You don’t have to be physically as low- functioning as I was to benefit from them. You can look for them at your local medical supply store or search for them using Google or Amazon.
No. 1. The Sock Thing
It was an occupational therapist who introduced this device to me. They (I had many over the months I was in rehab) taught me to do daily living activities -- brushing my teeth, washing my face, putting on clothes, socks and shoes.
I couldn’t bend down to get my socks on and still cannot. But the sock thing was a helpful device. You just slip the sock onto the end, pull it up and voila!

The sock is on your foot and the thing is in your hand.
In the midst of my pain and struggles to work my way back to moving, walking and taking care of myself, the sock thing gave me moments of joy. It seemed like a magic trick. It’s easy and it works.
When I got home, I searched the internet to find one like it.  There are many such devices at a variety of prices, but I found mine  for less than $10.
My husband thinks I am susceptible to gimmicky products and infomercials. I guess I am a bit. But this thing is no gimmick. It delights me (seriously) ever time I use it. It just gives me a feeling of accomplishment. I don’t have to ask anyone else to put my socks on for me.
Anyone having trouble putting on socks (like those who suffer from back pain or arthritis) would benefit from this device.
No. 2. The No-Rinse Hair Wash Shower Cap
I first came across this during my first stint in rehab. When you are busy fighting to recover from a horrendous injury or disease, washing your hair is not a top priority. But, you do think about it.
One of my roommates, asked by the nurse if she needed anything (like her water pitcher refilled, for example), said this.  “I really need my hair shampooed. And I could use some color, too.”
It had been days since she had been in an accident that left her severely injured. She hadn’t even been given a sponge bath, much less a shampoo.
The nurse ignored the hair coloring request but told her about a  shampoo-in-a-cap that she could get. They had to special order it for the patients. I got in on the ordering (don’t know how long it had been since my hair was washed).
It’s another miraculous product. It looks like a bulky shower cap, but if you warm it up a bit in the microwave, stick it on your head and massage it in, you have hair that feels  like it’s been shampooed and rinsed. It smells great and it lifts your spirits.
Back when I had hair and was confined to a hospital bed, my shampoo routine consisted of a nurse -- as part of my sponge bath -- grabbing a washcloth, dunking it in the soapy solution and handing it to me. I rubbed it on my hair.
Sort of the opposite of those shampoo commercials where washing your hair looks fun and luxurious.
When I was released from the hospital, I sent my husband to our local medical supply store to find the magical shampoo caps. The shop had to special order them and they were not cheap, but I would supplement the washcloth treatment with what was almost a real shampoo every once in a while.
It was as close to luxurious as I was going to get.
As I heard about friends or relatives undergoing surgery or breaking bones, I realized you don’t have to be bedridden to appreciate these. Anyone who can’t take a shower for whatever reason could use them.
No. 3. The No-Rinse Body Cleanser
Ditto with this daily living aid.


One of the products the hospital nurses used was a gentle no-rinse soap that I brought home when I was discharged. 
I couldn’t physically get in the shower for some time after I came home from the hospital. My caregiver continued the sponge baths I received in the hospital. She used the solution that didn’t require rinsing.
Eventually I got strong enough to get in the shower by myself and sit on a shower bench, which I still do today. But the no-rinse product is always handy for a quick standing-up-at-the-sink freshening-up. And I bring it when I stay at hotels or homes that are not handicapped friendly -- meaning I cannot physically use the shower or bath.


A version of this product also comes in wipes, which would also be useful.
  

Monday, June 13, 2011

Backstory: I'm a Survivor of Everything from Cancer to Paralysis to Hospital Roommates


To say I’m a cancer survivor isn’t enough. I’m a survivor of many things, all of which happened over the last six years.
Before then, I was a veteran journalist, a wife and mother of three, a Northern California native and Arizona resident who had moved to Southern California because my husband changed jobs. It was a good move, I repeatedly told my heartbroken teenagers, because we can keep our old friends and visit our beloved family in Arizona and Northern California while making new friends and learning new things in an exciting,  vibrant locale. 
I was at a proud place in my career. After decades in the newspaper business and freelance world, I had recently won national awards and the top award in Arizona journalism. When we relocated to California, I planned to resume my freelance writing once I got my boxes unpacked, the kids settled and my computer up and running.
Then, at age 48, I got sick. 
Doctors couldn’t figure out what was wrong with me. I had severe vertigo, a high fever for two months and drenching night sweats. I was unintentionally losing weight (which the old me would have loved) and was getting increasingly pale, weak and anemic.  I would lie down and take a nap after walking down the stairs from my bedroom to the family room.
Over the ensuing months, my legs quit working. Just like that. My ability to speak or see would at times just be gone, then come back.  Then I permanently lost the vision in one eye. I fell three times and suffered more than a dozen excruciating compression fractures in my back. I had every test and scan you can imagine. Multiple times.
A brain biopsy finally yielded lymphoma cancer cells. Doctors believed it was CNS lymphoma, affecting my central nervous system. (Later they determined it was diffuse large cell-B vascular lymphoma, one of a myriad of types.)
I was confined for  4 1/2 months in a hospital bed. I was paraplegic, couldn’t move a muscle from the waist down. I spent time in three hospitals and three rehabilitation centers, including one I believe was the best possible rehab place and one close to the worst.
At times I spoke in tongues, ripped out my intravenous line, was shackled to my hospital bed, had both an oxygen mask over my mouth and a feeding tube through my nose.
My lymphoma -- a rare type that does not show up on any scans -- was head to toe, but much of it was in my brain. Massive doses of chemotherapy for 15 months seemed to clear it up. But a year later, it returned.
I descended into hell again after my oncologist told me a stem cell transplant (also known as a bone marrow transplant) was my only option. I had that nearly three years ago and so far, so good.
So I am not just a cancer survivor, I’m also a survivor of a stem cell transplant that brought me back to and from the brink of death, massive quantities of steroids, severe steroid side-effects including osteoporosis and cataracts, total body irradiation, many surgeries, spinal taps, too many MRIs to count.
I’ve survived depressing paralysis, grueling physical therapy and terrifying drug-induced hallucinations.
I’ve had good and bad nurses, some of the best doctors on earth and a few who were far from that. I had a paid in-home caregiver whom I adored and a revolving door of visiting nurses who came to my house to give me shots or IV infusions.
I have seen my husband, children, friends and relatives bravely take on the sudden roles of caregivers and perform admirably.
I lived feet away from dozens of roommates in hospital- or rehab- rooms. Most were OK, a few were wonderful and some were downright rude and creepy. I’ve sampled hospital and nursing home food, tried out various wheelchairs, walkers and canes and visited countless number of accessible bathrooms.
Today I am able to do a lot of the things I used to do, albeit with planning and patience. I can drive, shop, cook, care for my family, visit with friends, dine out, and attend my beloved book club. I can go to the movies, concerts and plays. I can visit the beach. I’ve mastered the art of dancing while holding onto a walker. I attend a fabulous exercise class for “50 plus adults” at the local senior center.
When people see me with my walker, some give me a compassionate look. Several  will say, “You’re so young! What happened?”
I give them the short version. “I had cancer and part of it was in my brain.” 
Others -- a lot of them -- say, “Did you have hip surgery?”
To which I respond: “I  wish.”