Tuesday, May 22, 2018

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.

Saturday, April 14, 2018

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.

Monday, March 12, 2018

Leave No One Behind

It was another one of those calls.

My elderly father had just had another serious medical "event," resulting in CPR and an ambulance ride to the hospital. I needed to go be with him and my stepmother.

I opened a drawer in the early morning semi-darkness and grabbed a pair of jeans. I dressed quickly and quietly, trying not to disturb my sleeping husband. I pulled on the nearest pair of socks and my most comfortable shoes, not knowing how long I would be at the hospital.

I pretty much lived in those jeans for the next few days.

One day, during a conference with the medical team caring for Dad, I suddenly became aware that my jeans felt short. I looked down and saw red deck stain blotches on the front of the denim. Then came the moment of realization: I had pulled out a pair of old denim capris that I wore last summer for painting projects outside. As a finishing touch, the cuffs had come unrolled, hitting just above the ugly black socks that stuck out of my tennis shoes.


The worst part is that I didn't even care. My husband and I are already caregivers for a quadriplegic son. I take care of all of the nursing needs, and my husband stays up all night, every night, to ensure that our son is safe while he sleeps on the ventilator.

I have lots of days that are fashion fails. Caregiving is our life, our normal. We have done it for over two decades and are happy to do it. But it leaves little strength or emotional energy for anything else.

And 2017 was full of anything else. Health issues with my father and stepmother dominated the summer months, along with their major move to a new home closer to family and medical care. Our daughter was hit in two separate auto incidents that were determined not to be her fault. The second one totaled her car.

Then December hit with a vengeance. 

Our son developed two infections, and it took all our strength to keep him out of the hospital. Just as he began to recover, Dad passed out in -conveniently- the doctor's office. He was revived with CPR on the floor of the examination room and taken to the hospital by ambulance. He was admitted for observation, and we began the familiar juggling act to keep everything going at home and staying by my dad and step-mom's side. Our daughter navigated caregiving, a job change, and her own health issues.

Then, as the old year closed and a new year dawned, new and darker challenges assaulted us.

Here we are, in March, still deep in trial and work and sorrow. I cling to hope, believing against the crush of circumstances that God will deliver us as He always has. But these trials have reminded me in a profound way that I will not make it without Him. This old warrior is tired.

This is the reality of caregiving. 

If you're a caregiver, you probably walk a similar path. Sometimes it's a smooth, blessing-filled journey. Other times, it's all-out war, a battlefield filled with smoke and blood and the weeping of the wounded. This is the place where fashion fails and platitudes and casual Christianity are meaningless. Here the offers of prayers are taken seriously, where a simple act of kindness can literally help save a life.

Here, nothing much matters except to see the Deliverer coming over the horizon.

If you're a caregiver today, remember that your service to your loved one and to God is a sacred sacrifice. It's not a glamorous job, but it's a vital one. If you can relate to anything I'm feeling on any particular day, remember you are not alone. In fact, we're not meant to do this alone. Send me your prayer requests, and I will pray for you.

Caregiving is an often lonely job. But collectively we are the army that surrounds and encourages those who fight for others. Let's make sure no one is left alone on the fields of faith to struggle alone. The soul of any nation rests on how it treats its most vulnerable, both those who are wounded and those who care for them.

Wednesday, November 15, 2017

Vaccines and the Moral Dilemma

To vaccinate or not to vaccinate is a moral dilemma for many.

A New Vaccine for Shingles

In October of this year, Children of God for Life announced that the long-awaited, morally produced shingles vaccine has received FDA approval for licensing in the US. Shingrix, made by Glaxo SmithKline pharmaceutical company, is produced using a yeast cell line. Previously, people had only one option for vaccination against shingles: Merck's Zostavax which uses aborted fetal cells.

"Until now, people wanting to have protection from shingles have had to either use Merck's aborted fetal version or abstain entirely," stated Debi Vinnedge, Executive Director at Children of God for Life.  "We are absolutely thrilled that GSK has finally given the US a moral option!"

Shingrix has also received FDA recommendation as the product of choice and is also recently approved for use in Canada. Clinical trials have proven Shingrix to be a superior product to Zostavax, making it a generally more attractive vaccination choice for the prevention of shingles. 
Shingrix is 97.2% effective in people over 50 years old and maintained 90% efficacy in those 70 years old and above. After four years, those vaccinated still maintained with 95% immunity, compared with Merck's Zostavax, which is only 38% effective in people over 70 and maintained only 40% duration of immunity after four years.

To Vaccinate Or Not to Vaccinate? The Dilemma for People of Faith

In a recent case that highlighted the difficulties of vaccination for people of faith, a young mom landed in jail for refusing to vaccinate her 9-year-old son with a vaccine produced from the cells of an aborted fetus. She and her husband were not in agreement in the decision, and after initially agreeing to a court order to have the child vaccinated, she couldn't go through with it. A judge ordered her to serve seven days in jail, and she served her time, effectively creating a criminal class of parents whose conscience is violated by the use of aborted babies to create products for human consumption.

Today all common childhood immunizations are created using aborted fetal cells. Parents wanting to get their child immunized against measles, mumps, rubella, diphtheria, tetanus, pertussis, polio, chickenpox, and Hepatitis A are faced with the choice of either using a version that is repugnant to their moral convictions, finding an ethical version for those that have one, or take the risk of leaving their child unprotected. 

All fifty states in the U.S. now require at least some vaccinations for school entry, and updated vaccinations or proof of acquired antibodies to disease are required for healthcare workers across the country.

It is hoped that the success of the new shingles vaccine will encourage the development of other new, morally acceptable alternatives to current vaccines. Since Zostavax is a weakened version of its chickenpox vaccine, it is hoped that Glaxo Smith-Kline will produce a new version of the chickenpox vaccine using a weakened version of its shingles vaccine.

Perhaps soon people like the mom from Michigan will no longer have to choose between violating her conscience or putting her child at risk and breaking the law to properly care for those they love.






Sunday, August 27, 2017

Is Your Phone Making Someone Sick?

At a busy doctor's office recently, I got in line to check my son in for a routine visit. Instead of the old-school clipboard they used to update patient information, the receptionist handed me an electronic tablet. I took it reluctantly, scrolled through the prompts with the stylus, and confirmed the information on the display. I stood back in line and handed it in.

Then I went to the bathroom and thoroughly washed my hands.

Am I paranoid about getting sick? Yes, I am. As a caregiver to a son with high medical needs, I can't afford to be sick for even one day. Although we have grown children who help us a lot, I am the only one who does all the skilled nursing treatments required by my son's high-level spinal cord injury. And because we operate a certified nursing home to care for our son, regulations define who can come in to assist us.

Our son's fragile respiratory status, his father's commitment to watch him every night while he is on the ventilator to sleep, and our youngest daughter's struggle to juggle caregiving with a full-time job, makes the health of our household a vital concern.

A cold for others is an inconvenience. For us, it is a disaster.

According to a recent issue of RN Idaho, a magazine published by the American Nurses Association of Idaho for Idaho's nurses, my concerns about mobile devices are well-founded. In the article, "Mobile Bugs: Are Pathogens on Your Devices?" the authors assert that mobile devices are, indeed, potential reservoirs for pathogens.

Every year more than 90,000 people die in the United States from healthcare acquired infections, also known as HAIs. HAIs are infections acquired during a stay in a hospital. Researchers have found that up to 95% of phones in hospitals were colonized with bacteria, of which 5% were pathogenic. Some pretty nasty bugs were found on them, including MRSA, E. coli, Acinetobacter, Enterobacter, Klebsiella, and Pseudomonas. Viruses like rotavirus and adenovirus were also discovered.

The most disturbing news was that most healthcare providers reported that they didn't regularly clean their mobile devices. Although a direct connection between contaminated mobile devices and HAI's has not been established, it should be treated as a real possibility.

And even though research has concentrated on HAIs in a hospital setting, common sense would suggest that community settings - and especially ones in which sick people are concentrated - should be treated as potential infection pools, as well.

Prevention from infection can be as simple as regularly cleaning our own mobile devices at home and those we use on the job. It should, of course, become a habit to wash our hands before feeding or otherwise giving care to those in our charge. And we should speak up when we see a healthcare provider forget to wash up before providing care to us or a loved one.

Breaking the cycle of infection is an important way to keep ourselves and those we love healthy.

Callegos, Cara; Hong-Engelhard, Cindy; McDuffee, Veronica; Boeck, Caitlyn (2017, August, September, October). Mobile Bugs: Are Pathogens on Your Devices? RN Idaho, 5.