Monday, October 31, 2011

Hospital Roommate Etiquette: Rule Number Four

Here’s another in my suggested rules of hospital roommate etiquette. Rules onetwo 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.

Friday, October 21, 2011

Hooray! Two Disabled Accessories To Make Life Easier and Better

I’ve discovered two disabled accessories I want to share. I recently wrote a post about walker pouches and how important they are for every person who uses a walker.
But I was lamenting the fact that there is a large supply of boring utilitarian-looking ones, but very few fun, fashionable ones. I ended the post with a call to crafters to start sewing some attractive products.
A friend found someone who does just that. Her name is Kathy and she sews quilted walker pouches in almost 40 different patterns.
She says her mom needed a walker after knee surgery and her therapist hung a plastic bag from it to tote stuff around.  "Yuck", Kathy said, or so she told me. I can make something better than that, she thought. And she did.
One of Kathy's pouches
She offers a fabulous array of colorful patterns and has some that would be appealing to men, soon to be expanded.
Kathy sells them on Etsy, the internet marketplace for handmade items. 
The second disabled accessory is a day planner for caregivers. It’s written by blogger Tory Zellick, who provides a wonderful complement to my blog: she gives insight and advice for the people who care for the sick. Zellick was 18 when her mother was diagnosed with breast cancer and she was a full-time caregiver for the rest of her mom’s life, more than six years
She says her caregiving  would have been easier had someone handed her a day planner to keep track of all the important information. So she wrote one to help others who find themselves in similar situations.
“The Medical Day Planner: The Guide to Help Navigate the Medical Maze” is available to pre-order from Amazon

It centralizes all the information one needs when caring for a sick person. Whether you are alone in taking care of your loved one, or you share that duty with siblings or professionals, a planner where you can write stuff down is vital.
When you get a diagnosis of cancer or something else serious, your brain immediately gets fuzzy. While the doctor is talking to you, it’s hard to digest what he or she is saying. And it’s even harder to remember it.
A book I just read, “Carter Beats the Devil” which is historical fiction about magic and has nothing to do with serious illness, captured how I felt when I first got the news I may have lymphoma. In a scene where two people are having a conversation, the author writes not that one character’s mind was elsewhere, but that it “flew up, around the room and out the window.” 
When you get a life-altering diagnosis, your brain finally comes back to earth. Hours or days later, you ask yourself, “Now, what did the doctor say?”
Many people advise you to write things down, questions and answers for your doctor. It’s good to have something to consult when your memory differs from that of someone who was with you.
Later, as you go through the treatment and healing process, there are multiple medications, tests and appointments to juggle. And often, several people involved.
In my years-long case, I had voluntary caregivers, my wonderful husband and family and friends, a paid caregiver and a host of nurses who would visit my home to give me infusions or injections.
My kitchen island looked like a pharmacy, with mountains of meds (including two bottles that were so high, I called them the Twin Towers). Making sure I got the right doses of stuff at the right time was a confusing job with many participants.
When I first got sick, I started keeping a folder of my test results and notes. Sometimes a friend or my husband would write things down while I talked to the doctor. And we added it all to the folder. It got huge.
A day planner would have kept essential information in a central, organized spot, so anyone visiting my home could consult it. It would have assisted in the continuity of my care. As Zellick points out, it would even be useful for an able-bodied sick person  to keep track of his own medical journey.
My mother-in-law is fighting cancer now. She has a blend of family and professionals taking care of her. At one point about four months ago in the middle of what seemed like tag-team care, my sister-in-law said to me: “I need to get a book where we can all write things down and leave it at the house.”
The Medical Day Planner could not only be used at the house, caregivers could bring it to appointments. Too bad it won’t come out until March. We could have used it in our family for the past 10 months.
It would be a good gift for someone who has received a serious diagnosis of cancer or anything else, when you are not sure what to do or say. He may not even know he needs it (his mind might be still out the window). But he does.

Sunday, October 16, 2011

50/50 Movie Accurately Depicts Some Cancer Doctors

Saw the movie “50/50” the other night. My friend wanted to see it but she wasn’t sure if I wanted to. After all, I had lived through a harrowing cancer struggle and I might not be in the mood to be entertained by what was billed as a tough, funny tale of one guy’s similar battle.
I loved it.
It was true, beautifully-written and brutally-honest. It was laugh-out loud funny, hankie-grabbing moving and incredibly well-acted. (I told my friend that it helped that I knew the writer, Will Reiser, survived his cancer. Otherwise I would have cried buckets rather than cups. This isn’t a plot spoiler: he was doing pre-movie publicity.)
For a few of the scenes, I felt like Reiser had a camera behind me when I was meeting some of my oncologists. When the character Adam first meets with the physician who tells him he has cancer, the doctor, clearly uncomfortable, never looks him in the eye. Sitting behind a desk, he speaks doctor-speak and quickly directs Adam’s attention to the MRI on the computer, where he proceeds to talk in even more complicated doctor-speak. Meanwhile, Adam (who is expertly portrayed by Joseph Gordon-Levitt) is in shock, trying to comprehend any of what the doctor has just told him. When he asks a basic question, the oncologist suggests he follow up with the medical staff.
I felt like grabbing a remote and pausing the movie so I could explain to everyone in the theater how deadly accurate this is and how illustrative it is of changes that some doctors need to make in dealing with patients.
First let me say that I’ll be eternally grateful that I had the doctors I did and they treated me as they did. I’m still here after a lengthy journey with cancer
I was a tough case -- hard to diagnose for months. My type of cancer doesn’t show up on any scans or blood tests. More than one doctor said I may have had a brand new strain. Two called it “Laura’s disease.” One, a cardiologist, told me he will never forget me and will think of me when he sees my case discussed at medical conferences in the future. My current oncologist, who is younger than me, says he’s never had a patient with my type of cancer and as long as he practices, he will never see one again.
I didn’t want to be the poster child for the most difficult to detect disease on earth. Couldn’t I just get regular cancer and go for the routine prescribed treatment?
While I was on the long path to diagnosis, I was getting sicker and sicker. When a brain biopsy finally revealed a rare type of lymphoma, a nurse practitioner came to my hospital bed and told me. She was so warm and friendly and caring as she told me the news, I felt lucky to have that type of cancer and lucky to be in that hospital.
But later, as I was treated by some of the top doctors, I never got a warm, friendly or caring vibe from them. They were just like the oncologist in the movie, brilliant but visibly uncomfortable speaking face-to-face with a patient. My husband and I spent many an appointment in a dark room looking at my latest brain MRI, while the doctor repeatedly zoomed back and forth (my eye sockets coming scarily at us) and said "hmmmm."  So what does that mean? In plain English?
We got real answers later from their nurses or associates or, when I had a stem cell transplant, the transplant coordinator, who filled in all the blanks and the empty parts of me that needed nurturing and explaining and reassuring.
I can understand how this can happen. Visiting some of my doctors was a lot like the first appointment scene in “50/50” where Adam passes tragic patients in the hallway. The overcrowded waiting rooms of some of my doctors were depressing tableaus of fear and despair.
It was a revolving door of desperately-sick patients. These physicians didn’t have the luxury of time to spend with each patient: they just had time to deliver the medical bottom line and let someone else on staff explain it in human terms. 
The problem with this scenario is that to the doctor, I was one in an unending line of seriously-ill people. To me, I was the most important person in the world at that moment. It’s my life we are talking about. So to hurry through it without taking the time to add some compassion left me feeling confused, terrified and cheated. Just like Adam in the movie.
I know, some doctors are just better at the science end of things than the human interaction part of practicing medicine. But seriously, how much time does it take to put on a caring face?
Because one of the hospitals where I was treated was a teaching hospital, I was a living lesson for unending groups of doctors, residents and interns. They would enter my room en masse. White coats and serious faces. The main doc carried my chart. 
The routine usually went like this. The medical millipede would enter the room, stay at the foot of my bed. The doctor would ask me a few questions, jot a few notes, maybe check my heartbeat. Then the students would look at me as if trying to figure out what they had learned that day. Then they would shuffle out until the next time tomorrow when a new group made their rounds.
One day the man in charge asked me a question. If I could give some advice to an aspiring doctor, what would it be? Many pairs of eyes looked at me from the foot of my bed. 
I said, “Be nice.”
Visibly amused, they shuffled out.
It wasn’t what I meant to say. I didn't mean to imply they were mean. I meant to say “Be kind and offer some compassion and look at me like I’m a person, not a medical case.”
Some of my nurses were wonderful at that. Because I was a regular in the in-patient chemotherapy ward for more than a year, they welcomed me with kind faces every month when I showed up. One nurse took an interest in my family and I in hers. She kissed me when she saw me each month. Another nurse, when I told her I was not coming back for the last monthly chemo (yay), cried. She would miss me, she said. 
I don’t need kisses and tears from my doctors, but you get my point.
One hospital doctor stood out. When she would come into my room, she would not stand at the foot of my bed. She would come to my side, hold my hand and look into my eyes while she talked to me. She showed genuine compassion for what I was going through and didn’t act as if she were pressed for time.
It was nice.

Sunday, October 2, 2011

Disabled Necessity: Walker Pouches, Preferably Cute Ones

People who use walkers need pouches. Not just for convenience, but for safety and security.
While I’ve blogged about disabled people needing better (and more fashionable) walkers, the same goes for pouches. Or organizers. Whatever you call the item that hangs on the side or front of your walker so you can put things in it.
I’ve been using a walker for about six years now.  Some of that time I was bedridden and had to use a wheelchair. But I’ve been through multiple walkers (or mobility aids as they are called in medical supply stores or drugstores).
Each has features I like and dislike. As I was making my way around the house or hospital or rehabilitation facility, I would often comment that I needed something to hold my stuff or maybe a cup holder since moving from one spot in the room to another holding a drink was difficult.
What I didn’t know was there are plenty of walker accessories to make my life easier. But when you are suddenly disabled, you aren’t really thinking about the disabled accessory shopping scene. I’ve found out what’s out there by asking folks who have cool-looking accessories, by keeping my eyes open when I go to the disabled supplies area of my drugstore and by searching the internet.
Over the years, I’ve gotten stronger and more balanced. I can carry a drink and can (slowly) set the table for dinner.  But I’ve learned that having a walker pouch should be mandatory for everyone who is disabled. And there is always room for improvement in convenience and design.
I first spotted an attached walker pouch in my  senior exercise chair class at the senior center. Gloria has a nice blue one on her metal walker. She said her son bought it for her and she didn't know where he got it.
So I went online and found a similar one, in blue and green, that has lots of pockets and stays on when you fold the walker.
First, I put in a water bottle and tissues for when I’m walking around the house. I also used it to transport things from one room to another. But it was a few days after I got it that I learned it serves a greater purpose: a portable emergency kit. 
It was a Sunday night and I was headed to the restroom to get ready for bed. My husband was upstairs for the night and my sons were on their way back from a birthday road trip to the wine country. Because I didn’t want to miss a call from them, I put my house phone in the pouch before I headed to the bathroom.
I parked my walker in the open doorway, leaned against the sink as I washed my face and brushed my teeth. I took a gulp of mouthwash and started swishing, then lost my balance. I do this often, but I just grab onto my walker or a counter and it’s not detectable. I am unable to lift a leg quickly and put it down like other people can when they misstep.
Because my walker was behind me, I grabbed on to a towel bar, which promptly broke. As if in slow motion, I fell directly onto my right hip. 
A million things went through my mind. I had fallen three times before and had sustained multiple spinal compression fractures. Because I have steroid-caused osteoporosis and had kyphoplasty surgery on three vertebrae, I was extra susceptible to hip and spinal fractures.
Oh, (insert curse word), I thought.
Despite the tremendous pain,  I knew I hadn’t broken anything (because the times when I did break stuff, I knew it).  Yay, osteoporosis medicine.
There was a problem. I couldn’t get up. Now that much-mocked “I’ve fallen and I can’t get up!” TV commercial didn’t seem so funny to me.
I hoisted myself up to the toilet and spit out my mouthwash. My teeth: minty-fresh. Check.
Now to tackle the next thing: being rescued. I remembered my phone in my walker pouch (it was the first time I had brought the phone into the bathroom), so I dragged myself over and pulled it down.
Because I can’t see without my reading glasses, I had to try a few times but managed to page my husband, who came downstairs and  helped me up.
If he had not been home and I had not had my phone in the pouch, I would have remained on the bathroom floor for two hours, when my boys finally arrived home.
There are many times when I’m alone in my house. And there are numerous times when someone’s home but they wouldn’t hear me if I screamed.
Eunice with her pouch
I learned a big lesson that day: always carry essential items in my walker pouch. Whether I’m inside or outside, these items are in the pouch: my home phone handset, my cell phone, a spare pair of reading glasses, a bottle of water and light-up eyeglasses (my favorite new old lady accessory). 
If I’m in the living room or on the driveway, I know I can call for help if I fall. And the light-up reading glasses mean I can do it even if the power goes out.
So you walker users, make sure you have a pouch. Or have someone buy you one. There are many types out there: some fit on the front, some the sides of a walker. Some are baskets, which I don’t think would work for folding up. They do make cup holders to affix to your walker.
And a few of these accessories are attractive. In addition to the standard black and navy offerings, I found one online that has a cute Hawaiian theme.

Back at the senior center, another exercise buddy Eunice sports a lovely fabric walker pouch which suits her personality. She always looks fabulous and has an accessory to match. Her caregiver bought the pink paisley pouch at an out-of-town senior craft boutique. She said she knew Eunice would love it. Disabled folks aren’t at the top of the fashion curve, but we love some attractive options. 
Hear that, accessory designers? Sure, make navy and black, but other colors and patterns are fun. And crafters? Ditch the knitted covers for tissue boxes and toilet paper rolls and start sewing some slammin’ walker pouches.