In a recent blog post published by HealthLynked, I described my mother’s battle with lung cancer to raise awareness for National Lung Cancer Awareness Month. So, in line with that post I wanted to grab the opportunity to write about the importance of recognizing family caregivers, particularly since the month of November is also National Family Caregivers Month.
Who are Family Caregivers
The first time I heard the term Family Caregiver, I attended the opening to a short Dutch documentary film friends of mine wrote the score for, De Lengte van Liefde meaning ‘the measure of love’. It was about the relationship between a mother and daughter. The daughter, age 21, had suffered a stroke while on holiday. The plot of the film was how they struggled to find a sense of normalcy again. The daughter tried to regain her independence, while the mother sought to find balance in her own life. It was a touching story that went on to win the city prize in Utrecht during the 2016 Netherlands Film Festival.
The film was my first formal introduction to what a family caregiver was and their value to society. That is, a family member, friend or neighbor who takes it upon themselves to care for their relatives or loved ones. The director of the film, Anna Peeters, made it known that she specifically wanted to shed light on the importance of recognizing these individuals. In her own words, she was in awe of those who selflessly commit to caring for their loved ones regardless of the outcome.
An important difference between a standard caregiver and family caregivers is that the latter goes unpaid. Many family caregivers care full-time for their loved ones, often while working part-time or even full-time while taking care of their loved one. Family caregivers provide billions of dollars worth of long-term care in America alone, greatly reducing the strain on the healthcare system. Irrespective of the demand and toll caring for a loved one involves, family caregivers often sacrifice their time and own wellbeing to improve upon the quality of life for their loved one. They do this despite the dramatic changes their loved one undergoes–changes that also affect the caregiver.
Taking a hard look in the mirror
After seeing this film, I began observing my aunt. She made regular visits, sometimes two or three times a day, to Oma, my grandmother, who had suffered a debilitating stroke that paralyzed the left side of her body. I was so struck by her selflessness. I remember saying to myself, “Take notes because when the time comes you’ll need to do the same for your parents.” Fortunately, in the Netherlands, they have a healthcare system built for long-term care of their seniors. Despite acknowledging my aunt as Oma’s caregiver, and shadowing her dutifully when I could, nothing could have prepared me for what was heading my way.
In the fall of 2017, my mother was diagnosed with stage four non-small cell lung cancer. I had known her health was in decline. She was misdiagnosed three times for carpal tunnel, arthritis and rheumatoid arthritis. The doctors would later explain that the tingling and numbing sensation in my mom’s wrists, shoulders and knees were all ‘silent’ symptoms of a bigger problem that was rapidly spreading. Lung cancer is considered the deadliest cancer as the symptoms often go unnoticed until it is too late, having metastasized well beyond the lungs.
I was living in The Netherlands at the time, so in a matter of a few days after making arrangements for my apartment and work, I found myself on a flight back home. At the time, I remember having the full intention of at least working part-time. Working mobily would be completely manageable, or so I thought. However, when I first laid eyes on my mother, taking in her weakened state, I knew that there was really nothing else that mattered more than spending whatever precious time we had left together. I wrote my work I was taking an indefinite extended leave.
There are more than 40 million family caregivers in the United States, and usually the responsibility falls on women’s shoulders. A majority of family caregivers fall between the ages of 50 and 64 years old– individuals such as my aunt– while around a quarter of caregivers are between the ages of 35 to 49. The smallest and final group is comprised of 18 to 34 year olds. In what felt like a nanosecond, I found myself in the smallest group, taking on the role of my mother’s caregiver.
The duties of a Family Caregiver
Following my arrival, by day one, my mother and I had fallen into a steady routine. I would wake up, put on a brave face, and check in on her, never quite knowing what to expect. I would prepare the first of many small meals to give to her throughout the day. I was determined to put some weight on that tiny frame of hers, if not just to give her the energy she needed to go to her appointments.
Driving my mother to all her appointments was strangely calming. Honestly, I felt like I was being transported back in time during those car rides. All of a sudden I was 15 years-old again and driving Mom to all her real estate appointments on my learner’s permit, zipping around in her car, blasting the stereo. Only the feeling didn’t last once I put the car in park. I would then help Mom out of the car and bring her inside. I would sit patiently in the lobby, holding on to her purse, making sure I had all her jewelry secured as she began her treatment. Afterwards, if she still had the energy and needed a proper distraction, I would take her to do her favorite activity: retail therapy.
I was fortunate, even toward the very end she could still take care of her more personal needs. We would place a chair here or there for extra support to help her pause as she maneuvered through her personal routines. I would keep an eye on her at all times to make sure she didn’t fall, while trying to give a grown woman her space. When her hair was falling out, I was there with the clippers. When her nails needed upkeep, I was there with the polish. Whenever, whatever she needed I was there. Until it was time to let go.
Solidarity among Family Caregivers
These are painful, jagged memories that maim and leave deep scars, but you learn to cherish them and to welcome the discomfort as a reminder of what once was. My time as my mother’s caretaker came about as fast as it went. I would say that I was fortunate to have had the experience last only six weeks. Naturally, my family and I wished for nothing more but time, but not if it meant more suffering and pain. I count my blessings that she didn’t have to suffer long after her final diagnosis, and that I could be as present as I was. The experience changed everyone in her wake.
There are so many touching and at times horrific stories of family caregivers who spent years of their lives taking care of their loved ones. Anyone who has dealt with loved ones suffering from cancer, dementia, Alzheimers, Parkinson’s, MS, immune disorders, etc., will know exactly what I mean when I say time can be a double-edged sword. The less time you have when caring for a loved one, the more traumatic and upsetting the situation seems when you lose them. However, the more time you have, the deeper psychological distress can penetrate when watching your loved one change and suffer over the years. In the end, though, time is paradoxically also the ultimate healer.
All that time spent cooking for Mom, I lost more than 15 pounds. In fact, a little more than eight months later, I was diagnosed with Graves’ Disease, also known as hyperthyroidism. The doctor explained that Graves can be triggered when a person suffers from a traumatic experience, to which I replied, “Such as the sudden loss of a loved one?” It would take a year after my diagnosis for my body to find equilibrium again, almost exactly two years after her passing. This made absolute sense given that the grieving period usually takes about two years post-mortem.
Family Caregivers that keep giving
My story is not unique, but it only really covers particular kinds of short-term situations where family caregivers are necessary. Even my aunt’s story, caring for Oma with the help of a full nursing staff at her beck and call as provided by the Dutch government, does not cover the scope and magnitude of what many families go through. In many cases, there are family caregivers who completely manage the care of their loved ones, taking them into their homes, rearranging their houses, their schedules, even their workload so that they can assist their loved ones for the long haul. This is something we commonly see among aging parents who suffer from Alzheimers and/or dementia.
A friend and colleague of mine shares regular updates about her mom, who was diagnosed with Alzheimer’s more than five years ago. Thankfully, she shares the responsibility with her sister, but this requires a lot of tag-team effort. Listening to her stories, it very much sounds like their mother has re-entered a child-like state, not just because of her worsening condition but because of all their arrangements. Who takes her when? Who arranges dinner? How do we cover her personal needs? Where to hide the car keys?… Of course, not all situations have to be as dyer as they seem. It’s important to look for the humor in even these stressful situations.
For instance, my colleague decided to treat her mother to the ballet. Since her mother was hard of hearing and since ballet is largely visual, my coworker figured this would be a perfect opportunity for them to sit in silence and to enjoy the performance together. About 20 minutes into it, her mother very loudly asked, “What are they saying? I can’t hear what they’re saying.” To which my colleague responded, “It’s a ballet, Mom, they are saying nothing.” Again, 20 minutes later, she asked again. And again, “Nothing Mom, nothing…” By the time the performance ended, some two hours later, my colleague had scheduled her mom for a hearing aid fitting at Costco the next day. Lesson learned. Never assume your hard-of-hearing mother won’t have any trouble understanding the ballet.
While comical after the fact, when you’re in the moment these incidences can be quite stressful. Another colleague cares for both parents, also Alzheimer’s patients and well over 90 years old. After they went missing from their own home one too many times, my coworker knew she had to find a nursing home. Her parents had relied on one another for nearly 75 years, but it was time for outside help. It’s a sure sign that outside help is needed when the Florida Department of Law Enforcement is on the verge of blacklisting your parents for having too many Silver Alerts. In reality it is heartbreaking to see your loved ones decline before your very eyes, but most of the caregivers I’ve spoken to readily share similarly funny-in-retrospect stories. They are a badge of honor among the caregivers: they are not beaten down by the situation, but they can often laugh at it, at least in a bittersweet way.
How can HealthLynked help?
As you can see, no two situations are alike, but one thing is certain, a sudden or gradual shift will occur in your or your loved one’s health. You or your spouse, relative, neighbor or close friend must now step in. Whether it’s you or your family caregiver, the next question is how? We don’t have the same insurance plans; we don’t go to the same practice; we might not even be family? How will we manage our needs? How do I keep up with records, allergies and preconditions, appointments, prescriptions, and billing?
This is where HealthLynked can prove to be a wonderful tool. By creating a profile and becoming one of our nationwide HealthLynked members, you can grant others permission to view your records and to easily share information in a private, secure and HIPAA compliant format. This allows for the flexibility to share records with caretakers, whether they are spouses, relatives, neighbors or close friends, through the immediate ease of the HealthLynked App. There is no discrimination, and you can revoke permissions at any time you want. The HealthLynked platform is designed to make caregiving easier and more accessible.
To All Family Caregivers
Many presidents spanning over the last few decades have come to recognize Family Caregivers as heroes. After all, a hero is a person who carries out courageous acts and is noble of character. When our loved ones face a sudden trauma, or perhaps their bodies are suddenly failing them, they must now face the impending unknown. When this occurs, there is perhaps nothing more terrifying than having to deal with these obstacles alone. When a family caregiver can step in and provide their loved ones support during their time of need, it creates for a stronger family and a stronger community. They bravely step into the unknown to share whatever burden, even when they may not benefit, even when they don’t have to. A true and noble gesture.
So thank you to all family caregivers not just in the United States but all over the world. You most definitely are some of the greatest heroes in all of our communities.
To find a healthcare professional, use HealthLynked. It is a first of its kind medical network built as a social ecosystem with a higher purpose – improving healthcare. Go to HealthLynked.com to learn more, sign up for free, connect with your doctor, find a new doctor, and securely store and share your health information. Download our HealthLynked app available on Apple and Android devices.
Contributing blog writer: Marpessa Rietbergen, a Network Provider Administrator at HealthLynked.
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