Editor’s Note: The 2019 holiday season is now behind us. But it’s never too early to think about preparing for the 2020 holiday season. We hope you had a wonderful holiday and that you will find this post both educational and useful!

As a caregiver, have you ever spent Christmas in the hospital with your loved one? If so, you know the experience gives a whole new meaning to the popular phrase,“Caring and Sharing.”

There are reasons people with chronic illness or injury spend more holidays in the hospital than their able-bodied peers. The same is true for family caregivers vs. non-caregivers.

The biggest reason for this phenomenon is the stress caregivers and their loved one’s experience leading up to and during major celebrations.

During my fourteen years as a caregiver, I estimate that my husband and I spent half of our holidays (and other special occasions) in a hospital. That’s a significant and startling statement when you think about it! And we are not the only ones—it is something that many families with injured or ill loved ones and their caregivers experience.

Most of the time, my husband’s physical (or mental) health worsened right before (or during) a family celebration. In addition, for ten years in a row, I contracted pneumonia on or around special occasions.

Most people accept the fact that holidays can be stressful, even for non-caregivers, who have healthy immune systems. But when a primary caregiver or the one(s) they care for are suffering from a depleted immune system leading up to a holiday, it’s even more stressful. Surviving the season with sanity intact can be an overwhelming prospect for everyone involved.

A caregiver’s sense of being overwhelmed is often amplified if relatives or friends who are not caregivers, come to visit. On top of the usual daily care giving routine, you must somehow muster the energy for extra cleaning, cooking, shopping and catering to the needs of your guests.

Add to that a last minute medical emergency, which results in the need for a hospital stay and it gets complicated.

The very thought of dealing with these scenarios can be enough to send a caregiver’s immune system into a downward spiral. Particularly if they are already on the edge of burnout, or about to fall off the proverbial cliff!

I’ll illustrate my points with stories from my own life.   

OUR FIRST CHRISTMAS IN THE HOSPITAL

Our introduction to spending Christmas in the hospital occurred a few months after my husband’s tragic accident in August 1983. It was the first of many such holidays we would spend in a hospital environment.

Five months had passed since the accident and he was still an inpatient in a rehab facility where he’d stay for nine months.

He was not far enough along in his rehab to leave yet, even for a brief home visit during the holidays. So, we had no choice but to spend Christmas in the hospital that year.

I did my best to decorate the ward he shared with a dozen other patients. A strand of garland here, a piece of holly there, and a small artificial Christmas tree placed on a tabletop added a festive touch to the room. The hospital’s electrical code didn’t allow me to string lights around the room, although I wanted to do so.

We sandwiched our family holiday activities in-between my husband’s pre-scheduled daily therapy sessions—physical, occupational, speech therapy and more. Therapy after catastrophic injury doesn’t take a break, even during holiday season. 

The medical staff did their best to keep our spirits up, despite the difficult place we found ourselves in that year.

I remember experiencing bittersweet emotions during that time. On one hand, I felt gratitude that he was getting good care for his spinal cord injury. Yet, I felt sad that we would not be home for Christmas or New Year’s Day celebrations with our families.

A BRIEF MOMENT IN THE SPOTLIGHT

A social worker at the hospital located us during a therapy session one day. She said a newspaper reporter contacted her and told her he was looking for human interest stories for the holiday edition of the Houston Chronicle.

We had been caregivers for a quadriplegic friend in his home for a year-and-a-half. Four days after we’d moved out of our injured friend’s home, my husband also became a quad, which qualified in her mind as a unique story.

The social worker asked us if it was okay for her to set up an interview between us and the reporter. He wanted to print our story for publication during the week between Christmas and New Year’s Day. We agreed. The reporter met with us in a corner of the hospital lobby and took page after page of hand scribbled notes.

This interview was the first of many newspaper, T.V. and radio interviews we would receive from members of the media over the next fourteen years.

Yet, in spite of the curious attention from the press, the gravity of our circumstances was always in the back of my mind. I found it challenging to convey to others the harsh reality of living daily with a spinal cord injury─without getting too graphic.

The truth is, caring for a spinal cord injured family member 24/7 is not glamorous at all. In fact, it’s a grueling lifestyle. The same is true of so many other chronic injuries or illnesses. Unless and until people experience it firsthand, they have no idea what it’s like.

I only hoped our story would inspire strength and courage for others who found themselves in similar circumstances.

A COMPASSIONATE CLUB OF KINDRED SOULS

We were not alone. We met plenty of other families at the rehab center who were dealing with spinal cord injuries, brain damage and other devastating diagnoses because of accidents or illness.

As a result, we formed close bonds with many of them. It was as if we belonged to a secret club, invisible to the outside world. Yet, within the walls of the rehab center, we shared a common reality.

Regardless of race, creed, experience level or backgrounds, we understood intuitively the challenges that families we met in rehab faced.

For several families and individuals, financial or insurance coverage issues took center stage.

Others were dealing with the devastating emotional loss of spouses, who abandoned their loved one after diagnosis, rather than agreeing to become full-time family caregivers.

Still others (as did I), struggled to adjust to the sharp learning curve involved in becoming a caregiver. It required full-time effort to educate ourselves about our loved one’s condition. To learn how to best care for them demanded our full attention and energy.

Each case was unique. At the same time, our collective stories shared plenty of similarities. Once we became acquainted with each other, it only took a knowing glance between us to have compassion or kind words for those who were experiencing an extra hard day.

It was akin to what I imagine prison inmates serving life sentences must sense when meeting their fellow prisoners for the first time. There’s little discernable mutual hope for the future. Yet, the shared sense of loss brings people together at a deep emotional level.

It was devastating to witness those who lost their will to live. I will never forget walking into a ward shared by a dozen or more patients and noticing an empty bed. To realize it was occupied by someone for whom we cared and spoke to yesterday was shocking. To then learn that our friend gave up fighting for life the night before, brought me to tears every time it happened.

Hospitals and rehab centers can feel like a prison to those who were once healthy and able-bodied. This is also true of their family caregivers. Especially during extended stays.

MEDICAL PROFESSIONALS PLAY A KEY ROLE

I must admit upfront: writing on this topic stirs mixed emotions in me. I’ll try to explain why without disparaging the majority of medical professionals who care deeply for their patients and treat them with fairness and kindness.

But, to be honest, in my caregiving experience, medical professionals have been both a help and a hindrance during holiday stays in the hospital.

THE GOOD STUFF…

Most medical staff members are helpful and do their best to show consideration for patients and their caregivers who must spend the holidays in the hospital.

I recognize and honor the fact that medical professionals have a tough job to do. And most of them strive to do the job to the best of their ability every day. But sometimes they become so focused on addressing illness or injury medically, empathy for the emotional needs of patients and family caregivers is inadvertently overlooked or ignored.

Let’s face it: being admitted to the hospital any time of the year can be stressful for both patients and their families. More so when hospitals are short-staffed during holidays. It stretches medical professionals to their limits.  

Often, they too experience extra stress while caring for patients during special seasons of the year. Add to this the fact that primary medical professionals need vacations too, requiring back-up physicians to cover for them,  and stress levels of both patients and medical professional can climb exponentially.

The important truth is this: it only takes tiny gestures of compassion from medical staff to create huge positive outcomes in a patient’s overall healing.

Several recent studies have shown that even an extra four minutes of attention from physicians can mean the difference between patients feeling that the medical staff truly cares for them vs. when staff seems to be emotionally detached.

Remarkably, a doctor spending a few extra minutes to listen to patients and caregivers, can change the paradigm outlined above in dramatic and positive ways!

https://www.dignityhealth.org/articles/How-the-Power-of-Physician-Empathy-Helps-Patients-Heal-Faster

One way in which medical staff can brighten the otherwise gloomy experience of being admitted to the hospital during the holidays is to allow families of patients to decorate hospital rooms for the season (within reason).

It’s the small things that matter most to patients and their families.

For example, I’ve encountered doctors and nurses who wore a Santa hat while making their rounds, spreading cheer and goodwill wherever they went.

Others took time to notice and comment on decorations around a patient’s bed to help brighten a patient’s day.

It helps if hospitals relax visiting hours and/or allow extra visitors (if workable). This makes it possible for extended family members to take part in joyful celebrations with patients.

Hospital rooms are perceived to be a home-away-from-home for patients and caregivers alike. As such, they should be made as comfortable and familiar as possible.

Pictures, blankets and or decorations from home can create an atmosphere conducive to healing and rest. In my opinion, this includes a comfortable place to sleep for caregivers who stay the night. But don’t get me started on that topic!

Kind words from medical professionals help facilitate the healing process and the likelihood that patients will follow doctor’s orders.

https://www.goodnet.org/articles/how-doctors-kind-words-help-patients-heal-faster

It has been proven that happy patients heal faster than those who feel alone, isolated or ignored by medical staff.

https://www.newsmax.com/health/Health-News/health-kindness-compassion-medicine/2014/11/24/id/609278/

THE BAD… AND THE UGLY…

DISCLAIMER: The stories below describe rare exceptions to how most medical professionals interact with their patients in a hospital setting. But they illustrate the frustration and friction that can occur when things go wrong. The reason I share these stories is to show the lasting impact that harsh or negative actions or words from a medical professional can have on patients and their families.

The opinions and observations stated below are from an experienced caregiver’s perspective and are not intended as a general criticism of all medical professionals.

As a caregiver, at times, I’ve encountered medical staff who were rude or uncaring.

EXAMPLE ONE: The Night Nurse

 This incident occurred during Thanksgiving season 1983.

This is a true story of a supervisory night nurse with an obnoxious attitude. She was responsible for my husband’s post-surgical care after he was stabilized, but before his transfer to rehab.

He had just had major surgery on his spinal column and had to lie flat on his back in bed.

At first, they assigned him a room right across from the nurse’s station so they’d hear him if he called out for help. He shared that room with another patient who was able to push the alert button on his behalf if needed. Additionally, his mother and I took turns sitting by his bedside.

But after only two hours, the night nurse in charge moved him to a room around the corner from the nurse’s station, at the far end of a long hallway. After she moved him, she refused to allow his mother or me to stay in the room with him.

That’s how he found himself in a room alone, out of hearing range of the nurse’s station.

He needed to watch T.V. 24/7 to keep himself distracted from his pain and discomfort. Yet, he had to wear prism glasses to see the T.V. in that position. And he wasn’t able to put them on, adjust them, or take them off without help.

Paralyzed from shoulders to toes, it was challenging for him to lift his hand more than an inch off the bed while lying flat. He also did not have use of his fingers so it was impossible for him to press the call button attached to his bed to request help if he needed it.

In addition, he was in a state of full-blown panic after coming out from under anesthesia. It was unbearable for us to leave him without a way to communicate with the nurses.

We begged the head nurse to help us figure out a way for him to communicate with her and the other nurses so he could manage by himself. She refused.

In fact, she fought us every step of the way. It turned into an all-night battle. Despite being stressed and exhausted from the twelve-hour surgery he had just undergone, we were determined to find an acceptable solution.

Finally, in desperation, in the middle of the night, we brainstormed with other family members huddled in the waiting room and hatched a plan. First, we sent someone to get the supplies needed from my mother-in-law’s house.  Then, we tip-toed past the nurse’s station while she was tending other patients.

Once in his room, we attached a small bell to the lowest part of the hospital bed rail, using a short string. It was less than an inch away from his hand, so he could easily ring it to get the nursing staff’s attention.

Still, the night nurse ignored his requests for help. I didn’t understand why we had to fight so hard for something so simple. It made no sense.

What were we to do? What would you have done in that situation?

By morning, we ran out of patience and workable options. We had no choice but to report her to the hospital administrator. Afterwards, they transferred him back into a room across from the nurse’s station. His mother and I were allowed back into his room, this time with no restrictions.

Perhaps she was having an exceptionally challenging night. But from our perspective, her negative attitude and related actions hindered rather than  helped us through that stressful night.

EXAMPLE TWO: The Social Worker

After my husband’s surgical incisions had healed enough to move him,  they transferred him to the rehab center. During his first week in rehab, the social worker assigned to him cornered me in the hallway one day. He asked me how I was adjusting to our new reality.  

Towering above me by at least a foot, he was an intimidating figure. It didn’t help when a few seconds later, he  blurted out , “When are you going to leave him? Eventually, most spouses do, you know.”

I was downright stunned for a few seconds while processing his question. His words offended me to my core.  It took everything within me to resist the urge to turn and walk away from him.

Instead, I mustered every ounce of my courage. Pulling my 5 foot 4 inch frame up as tall as I was able, I made direct eye contact with him, and squared my shoulders. I quietly informed him that I had no intention of leaving my husband and explained why in no uncertain terms.

He continued to argue aggressively with me. I held my ground. I could not imagine his motives for asking such a personal question, nor was it (in my opinion) any of his business.

Perhaps he was in the habit of asking all spouses of his injured patients the same question. He may have thought he was helping me face reality. I’m sure he has long since forgotten he ever said that to me, but I can’t forget how his words affected me. In retrospect, he should have approached this sensitive topic with more compassion.  

I have long since forgiven both the night nurse and the social worker. I pray God’s blessings on them wherever they are today.

FINAL THOUGHTS

Keep in mind that both of these incidents occurred back in 1983, long before basic compassion was widely adopted by most hospitals as a standard of care. In the decades that have elapsed since then, I’ve witnessed a gradual change for the better in most medical facilities.

For that, and on behalf of all family caregivers everywhere, I am grateful. I hope the trend of compassionate care and positive patient interaction continues to be the norm.

I also hope that my experience will encourage family caregivers to continue to advocate for their loved ones when they land in the hospital during Christmas, or any other season of the year.

Every patient deserves respect and proper care while in the hospital. Likewise, every patient needs the help of family or friends to make sure that abuse or neglect do not occur under any circumstances.

As family caregivers, even though we may experience burnout ourselves, we are often the only people who stand between our loved ones and overworked or stressed hospital staff. Regardless, mutual respect should be demonstrated by both sides. No matter what.

Even more so during holiday seasons.  

LIFE LESSONS LEARNED:

• Caregivers need to take extra good care of themselves and their loved ones before holidays to prevent an unexpected health crisis.
• It’s a good stress reduction practice to discuss with your doctor specific action steps you should follow if a crisis occurs while he/she is on vacation. Get contact information ahead of time about who will offer back-up care in your doctor’s absence.
• If you as a caregiver need hospitalization (and your loved one cannot be left alone), things can go downhill fast. That’s why a plan must be put in place in advance. It’s vital to identify and train any volunteer willing to offer emergency back-up care at home for the injured or ill person, before you reach crisis management mode. Survey family, friends, or (if applicable) members of your church who might be good candidates. If all else fails, find a nurse or Certified Nurse’s Assistant in your community who can help. If you can’t afford to pay, barter goods and services, or offer other incentives or rewards.  
• The attitudes of everyone involved can make or break the holiday spirit when facing the prospect of an unplanned hospital stay. A positive mindset (and a few personal items from home) can help keep things bearable. Get creative!
• Mutual respect and cooperation between medical professionals, patients and their caregivers in hospital settings are vital to fostering healing.
• To add insult to injury is not acceptable under any circumstances.

If you are a family caregiver and you feel you need additional support on this topic (or in general), here are some excellent starting points:

Caregiving holiday survival tips – https://www.aarp.org/caregiving/home-care/info-2017/holiday-caregiving-survey-fd.html

How to find care giving support groups (online or face-to-face) –  https://www.aarp.org/caregiving/life-balance/info-2017/support-groups.html

Other resources caregivers should know about – https://www.aarp.org/caregiving/local/info-2017/important-resources-for-caregivers.html?intcmp=AE-CAR-CLB-EOA3

Everyone wins when compassion, tolerance and sensitivity come together to promote healing, happiness and honest communication in hospital settings.

Whether you are a caregiver, a patient or a medical professional, remember this: by adopting a positive mindset the next time you are in the hospital at Christmas (or any other time of year), you’ll be giving a priceless gift to yourself and those around you.

The gift I refer to is called, “Peace on Earth, goodwill toward men.”