What You Need to Know about the Coronavirus (2019-nCoV)

A new (novel) virus, called the coronavirus (2019-nCoV), has alarmed the public and health care providers alike in recent weeks. It emerged from Wuhan, Hubei Province, China, and has rapidly spread to Australia, Canada, France, Japan, Macau, Malaysia, Nepal, Taiwan, Thailand, South Korea, Singapore, Vietnam, and the United States. The first cases were reported on December 31, 2019, according to LiveScience.com. 

Early indications are that the virus may have come from the Huanan seafood market. It was initially thought to be connected to human infection from animals sold at the market who carried the coronavirus. But continued infection in people with no connection to the market has pointed to human-to-human infection. At this point, it is unknown how the virus is being spread. It appears to be spreading during the incubation period, before a person begins to develop symptoms, making it especially dangerous.

Symptoms are believed to appear from 2-14 days after exposure. Common symptoms are fever, cough, and fatigue. Some less common symptoms are coughing up blood or sputum that may be blood-tinged, headache, and diarrhea. Complications have included acute respiratory distress syndrome, anemia, acute cardiac injury, and secondary infection. 

Treatment for now consists of supporting the patient's systems while the body fights the disease. No antiviral treatment has been effective against 2019-nCoV. Corticosteroids have been administered in some cases, but it is unknown whether these treatments were beneficial. Trials are now being conducted to find effective treatments and a vaccine against the disease.

Currently, the Centers for Disease Control and Prevention (CDC) is recommending that those who either have the disease or are being tested for it wear a mask. This may prevent the transmission of disease through larger fluid droplets. But according to Fox News, Dr. William Schaffner, a professor of preventive medicine and infectious diseases at Vanderbilt University, and the medical director of the National Foundation for Infectious Diseases, has warned that wearing surgical face masks won't prevent the spread of the disease.

A respirator may be more effective if worn correctly. But for now, conscientious hand-washing is recommended. The CDC has listed the following ways to minimize exposure to this virus:

• Wash your hands often with soap and water for at least 20 seconds. If soap and water are not available, use an alcohol-based hand sanitizer.
• Avoid touching your eyes, nose, and mouth with unwashed hands.
• Avoid close contact with people who are sick.
• Stay home when you are sick.
• Cover your cough or sneeze with a tissue, then throw the tissue in the trash.
• Clean and disinfect frequently touched objects and surfaces.

Sources: 

https://www.livescience.com/new-china-coronavirus-faq.html

https://www.contagionlive.com/

https://www.foxnews.com/health/do-surgical-masks-protect-against-coronavirus

https://www.cdc.gov/coronavirus/index.html

https://www.cdc.gov/coronavirus/2019-ncov/about/prevention-treatment.html

A Walk Through Thoracic Park

This last Thursday I spent the day completing my quadriplegia son's care needs. Friday I spent screaming at the nearby hospital. Saturday I was home again catching up on my son's care.

I am a caregiver. This is my life. If you care for someone you love, you understand.

The screams didn't last all day Friday, just when I tried to get off the MRI table after the imaging on my spine was complete. My muscles froze into one solid spasm. I couldn't move, and it felt like my back was being broken into two pieces. A series of primal screams escaped from me that felt like my soul had leaked out. I was finally able to make it to a wheelchair, where I was taken down to ER.

The two MRI techs who helped me are probably in counseling today. One of them kept mumbling to me, "I'm so sorry. I'm so sorry."

After hours in the waiting room, hunched over in a wheelchair, dressed in hospital scrubs, and clutching my belongings, I was finally taken back to an exam room. There I found some relief and answers to my pain. I also had time to think about the experience. What did they do right at that hospital? And what, if anything, could they have done to help me?

What they got right.

1. I had had to cancel my original appointment in radiology due to snowy weather and bad roads. The roads had cleared up, so I drove on up and appealed to them to work me in. They not only got me in, they did it so quickly I barely had time to pay for the new purse I found at the gift shop. It takes a lot of pain to keep me out of a gift shop.

2. They had two baskets of pens at the check-in. One was labeled "Clean," and one was labeled "Dirty." As a nurse who is OCD about infection control, I was very impressed by this kind of dedication to cleanliness.

3. The room (when I finally got to one) smelled and felt clean. The privacy curtain looked new. Everything appeared well-organized.

4. The health providers took time to listen to my concerns and took my perspective into account when writing orders.

How they could improve.

1. Training personnel on how to assist patients with mobility problems. I had warned them about my intense back spasms and doubts about being to get off the table. They quickly assured me they would take care of helping me back up. But in the midst of the spasms, I had to instruct the tech on how to press and massage the back muscle to release the spasm. It was the only way I got on my feet long enough to make it to a wheelchair. 

2. Listening first before making an assumption about a patient's needs. After setting me in the waiting room to tough out the pain, they came and got me once. I thought I was going to a room, but they wheeled me down to have a CT. When I told the tech I couldn't get down flat again then, she mistook my hesitation for fear of the test and proceeded to instruct me on how it wouldn't take long and wasn't scary. I responded a bit testily that I was a nurse, had no problems with getting a CT (I had just endured the MRI tube), and that my problem was getting off the table. I was returned to the waiting room.

3. Remembering that pain, though not a visible sign of disease or injury, is a significant symptom. As I sat in the waiting room, others came and went. I obviously don't know why they were there, but I have a lot more respect for those who arrive in an emergency department in pain. I understand the struggle those departments have with people who are on the hunt for pain killers. But I can't take narcotic pain killers. Two or three ibuprofen would have helped.

I finally got seen and am on the mend. Thank God I have still been able to care for my son through my own health saga. And I thank God for a loving family and faithful friends who have stepped in to pray for us and assist us on the rough days.

What are your stories as you walk through your own caregiving experience? Do you have ideas that could improve the quality and delivery of healthcare in your area? We'd love to hear them. 

Gather the Memories While You Can

He had been in fragile health for some time. His favorite way to spend an afternoon was to sit and reminisce over his life. As his memory began to slip, sometimes he told the same story over and over, usually beginning with these words, "I may never have told you this..." Distracted by a myriad duties I needed to be finishing, I often just smiled and endured the recitation while I mentally organized my day. After all, I'd heard it many times before.

As he got older and frailer, I began to realize that one day soon, he would leave us, taking his memories and my connection to our shared past with him. I began to get a pen and paper, or a hand held recorder, and ask questions while I took notes. Sometimes it was a lengthy session. Sometimes I just jotted down a sentence or two.

What I discovered was a gold mine. Dad was a veritable storehouse of information, dates, and names. Our afternoons together became a treasure hunt for my family's story. We both had our DNA tested and he gave me valuable clues as I pieced together our pedigree. I learned not only what he did, but why he did it, answering some nagging questions about our family and bringing me a new sense of release and peace.

With his help, I was able to publish a book on the history of the community in which we live. I couldn't have done it without his vast knowledge of people and places. The book is dedicated to him, and my only regret is that he passed on before I could place it in his hands.

Now he is gone, and I cherish those times I had with him. He took great comfort in knowing that what he thought was important for us to remember about him and the family had been preserved. And I learned so much, mostly how vital it is to be present when I am with others. I had always taken his presence for granted, and now that he is gone, I often find myself trying to remember something and wishing he were here to ask. I miss the essence of who he is, but I am comforted by the treasure of the sweet fellowship I was honored to experience.

As a lay researcher, I realize the importance of writing down even the most basic family information. I have spent countless hours trying to dig up just the names and birth dates of people associated with a history project. Information that may seem unimportant now may be vital to someone later.

As a caregiver myself, I know that sometimes we are so focused on what our loved ones have lost that we forget what they still have to offer. Caregiving, with all its trials and stresses, can be a deeper experience when we acknowledge the life that was lived.

This November is National Family Caregivers' Month. As we gather around the Thanksgiving table this year, let's remember to listen to Grandpa's stories a little closer. Scoop up the memories while you can. Write them down. Even a scribbled note may yield a treasure trove of information later. While you're at it, don't forget to write down your own story for those coming after you.

Gather the memories while you can. One day they will be gone, and you will be a better person for having listened.

Three Things People Say that Make a Caregiver Cringe

What do I need? Where do I start?

During our twenty-one years of dealing with disability, people have taken really good care of our family. So I have hesitated to share today's post, thinking that it may make us appear ungrateful.

Believe me, we appreciate every good thought, prayer, and action taken on our behalf over the years. We are truly thankful for the caring people who surround us.

It is written, however, not to complain but to encourage others who might want to help their caregiver friends but don't know how to reach out effectively. Here's a few ideas of what caregivers need -and don't need- to hear from their concerned friends and loved ones. I've included some ideas that my friends have concocted for us that saved our sanity and made us feel truly loved.

1. "Let me know if there's anything you need."

On any given day, I pretty much need everything: rest, hope, money, respite, the weeds pulled in my flower garden. But I'm not likely to call you anytime soon. Our situation has taken so much of our dignity over the years, I just can't ask anyone for more. It's hard to always be the ones in need, so I will probably politely thank you and leave it at that.

I also know that most of our friends and family would gladly help out if they knew what to do. A great way to really assist your caregiver friend is to not wait for that phone call.

Just do something.

Don't worry if it's the right thing. They'll love you for trying, even if it's not really what they needed. Instead of a vague offer of help, pick out something specific and do it. For example, you can ask, "What is your favorite pizza and would Thursday night be a good time to drop it off for you? Or, "I'm thinking of weed eating a few weeds this weekend. Could you use an hour of weed whacking around your yard, too?" Drop off a deli tray or a plate of brownies. Stick a prepaid card in the mail for a meal at a restaurant that does takeout or curbside pickup.

Once when our son was being released from the hospital after suffering a particularly bad infection, a friend dropped off a gallon of milk, toilet paper, and a take-and-bake pizza. She didn't stay long, because she knew we were exhausted. And the pizza could be refrigerated until we were ready to cook it. What an awesome and thoughtful thing to do.

Recently, I had out-patient surgery. Two of my dear friends, who know that I can't ask for help, took charge. Because my husband had to keep up the caregiving at home, one friend drove me to the hospital, waited while I had the procedure, and drove me home. She also brought food for the frig. After I returned home, another friend babysat me for the afternoon while I rested. She brought food, too. I can't begin to tell you how much these two did to ease my recovery and restore my soul.

Helping out a caregiver doesn't have to be expensive, involved, or time-consuming. Just the fact that you took the time to reach out is healing to a family scoured out by overwork and sorrow. Sometimes that can be achieved by simply sending a card in the mail to let them know you're thinking of them or a Facebook message of encouragement.

2. "Be sure to take care of yourself."

Um, okay. I'm trying. But who will do my job for me while I get that pedicure?

Believe me, caregivers know that they need to take care of themselves. But most day, theys are too busy just keeping their heads above water as they are swept down Urgent River. It's like telling a drowning person to take time for himself. He can't do that. He's busy drowning. What he needs is to be pulled to safety, not a haircut.

A great alternative would be, once again, to put feet to your concern. See number one for ideas. Anything you can do to relieve some of the caregivers' burdens can give them a chance to find time for themselves.

You can also ensure that a caregiver is pampered by pampering her yourself. Soon after our disabled son returned home after his accident, a group of my friends threw me a shower at a friend's house. We ate together, they washed my feet, and they showered me with gifts. After all the weeks of standing beside our son as he fought for his life, I had almost forgotten how to do anything but exist in pain. The gift of an afternoon with my precious friends reminded me how wonderful it is to be alive.

3. "You should get out more"

This one is right up there with the previous comment. Obviously, if we could get out more, we would. Caregivers are not only too busy, they are often too tired to keep up much of a social life. This is part of the sacrifice they willingly make to serve their loved one. They understand what they are giving up, and they are willing to do it, which may seem incomprehensible to others.

Caregiving often leads to a sense of isolation and loneliness. Instead of shaming them for not being able to make the extra effort to socialize, consider how you can draw the circle that brings them in. 

Use some creativity if you can't figure out how to get them away for a respite. Why not give them a "shower" in their own home, so they don't have to find an alternate caregiver? You could gather a few friends, replenish their kitchen or bathroom necessities, and have some fun in the process. Or host an evening of bunco or a"movie night" in their living room. Have a barbecue in their back yard and give it a Caribbean theme. Take your life group to their place for a Bible study. Fill their house with laughter and love for a couple of hours and let them be refreshed. Just be sure to ask about any special considerations for their loved one.

Once an acquaintance who loves to cook insisted on preparing a multi-course dinner for us at our house. He even wore a chef's uniform and served us as we sat around the table and took in the wonder of it all. The meal rivaled anything we could have ordered at a restaurant.

What most people who care for others need is, really, just to be remembered on some level. 

Just the fact that you reached out and let them know they are not alone is priceless. Your expression of concern can be as individual as you are. Make it simple, or make it a multi-course dinner. What will matter is the knowledge that someone cared.

When We Reach for Uncommon Goals

It is shortly after midnight when I am awakened by the shrill beep of the backup battery at my bedside. 

As my brain struggles to emerge from of a deep sleep, a shudder runs through me. That sound can only mean that our power is out again.

We live in rural Idaho, a beautiful place teeming with wild critters (most of whom are actual animals) and nature. But sometimes nature betrays us here. And when it does, it's often the spring storms that plunge us into the dark. Twice this month, wind and rain have taken out our power.

And because our adult son Kevin has depended on a ventilator to sleep since his spinal cord injury in 1997, a power outage is a big problem for us. After his accident left him paralyzed from the neck down, Kevin was initially completely vent-dependent. But he surprised the medical world by regaining much feeling and movement. After two years of needing the ventilator for every breath, he was able to wean off for all his waking hours. He stills goes back on the ventilator at night. Without it, he can't sleep.

In the beginning, every power outage panicked us. 

It meant "bagging" him by hand with the same type of ambu bag used by emergency personnel until the electricity was restored. After he could breathe on his own, it meant staying awake until we had power again.

Over the years, we bought a couple of generators in an effort to find a way to let Kevin sleep in an emergency. These were cumbersome and loud. We graduated to deep-cell batteries and a pure sine inverter with which to keep his equipment safely running through the outages.

But an outage meant someone had to know how to switch everything over to battery power. Even with short-term battery backup until we got the other equipment in place, it was still cumbersome.

So Kevin began researching solar power. He did all the research himself, consulting with techs and combing through reviews and YouTube DIY videos. He spent hours learning how solar power works and the best system to safely power sensitive medical equipment.

It took him two years to assemble the needed supplies. He and his father brainstormed how to set up the system for the most efficient and safe conversion of sun power to electricity. They made the system off-grid so there would be no possibility of dangerous feedback to the power lines.

Hello, Idaho; nature calls.

Recently the system was finished, and before we even had a chance to take it on a test run, nature provided the opportunity. When the power flickered and died shortly after midnight. Kevin's dad Aaron, who stays up every night to ensure Kevin's safety on the ventilator, made the changeover to the solar-powered battery with a couple of switches.

To our relief, the system worked perfectly. Kevin stayed on the ventilator all night, and by the time he got off it, the system had already recharged the batteries, so they were ready for another night.

This week, it happened again. 

Once again, the system performed without a hitch.

Kevin has made a couple of additions that now allow him to safely charge his smaller devices, such as his phone and touch-pad, directly from the battery bank.

This morning, I'm grateful for a son who has taken intelligent charge of his own safety. I'm grateful for a husband who was willing to be his hands and feet in building the system. I'm thankful for the opportunity to watch them work together for a common goal. I'm inspired by this example of caregiving at its purest, as I watch a father assist his disabled son reach uncommon goals.

Tonight, other trials may keep me awake. But Kevin's independent spirit has made it possible to sleep better, knowing he will.