WORD OF CAUTION:
This blog is not for the faint of heart.
It’s sometimes raw, brutally honest and it may often be difficult or painful to emotionally digest parts of my story.
If you are easily offended by the occasional ugliness of reality and/or the dark side of human nature, you may want to proceed with caution.
That said, in all honesty, if we never face or deal with the negative side of the caregiving experience, we’ll never appreciate the rewards and benefits it can also offer.
DISCLAIMER
Another thing I wish to set straight from the very beginning is the matter of personal faith (or the lack thereof).
I am a faith based writer, and grew up as a preacher’s kid in a Christian home, so that is my default approach to life.
You may have a very different personal frame of reference when it comes to spirituality or “religion”. Or, you may not believe in or identify with any faith at all.
That’s perfectly okay with me. I am not here to debate anyone’s theology or to push my belief system on anyone.
I am simply going to be who I am and speak from my own perspective. Take what you can use and leave the rest.
That said, if some of the episodes from my life (documented in this blog) were to be made into a movie, the film might be rated somewhere between PG-13 and R.
I make no excuses or apology’s for this fact because as most of us know, real life is imperfect by nature and can get messy at times, regardless of our personal spiritual belief systems.
The only exception to this rule is that I will not use actual profanity on this blog. The use of profanity in verbal or written form is a personal pet peeve of mine and it is a line I refuse to compromise or cross. Even if it is part of the story.
I promise I will warn you up front if/when that is the case when describing any parts of my personal story.
I have always had a strong personal faith in God and have witnessed firsthand His power to change lives for the better (including my own.) I don’t believe in political correctness or painting a rosy (false) picture of a perfect life, faith based or otherwise.
I do believe in unadulterated divine TRUTH. I also believe in divine RESTORATION. And when divine truth results in divine restoration, it is a beautiful thing.
The end goal here is to show that even an imperfect life lived as a flawed human being who serves other flawed human beings is still well worth living!
Regardless of our faith or belief system, as long as we are alive on earth, we will experience suffering of some kind. History teaches us that fact.
For those of you who identify as Christians: do I believe that the Christian life is one of perfection? No. Not on this side of eternity.
For example, look at what Jesus and his followers experienced during their time on earth and then try to convince me they lived “perfect” lives. Their earthly lives were not perfect by any reasonable human standard.
They were ridiculed, spat upon, laughed at and scorned by others for their positive words and deeds. And in the end, most of them died horrific deaths for standing up for what they believed in.
In fact, there are similar accounts of people of various faiths in many ancient historical texts that prove this point:
Jesus was a Jewish teacher who went about doing good, healing and helping others everywhere he went. He was not materially rich, nor was he popular with the ruling authorities of his day. It is said of him that he “was a man of sorrows who was well acquainted with grief”. In the end, he was crucified in a most inhumane manner, usually reserved for only the worst criminals.
https://en.wikipedia.org/wiki/Jesus
Mahatma Gandi lived a life of extreme self sacrifice and poverty in service to his country and to humannity. He led a massive movement against the rulers of his day and was eventually assassinated.
https://en.wikipedia.org/wiki/Mahatma_Gandhi
Mother Theresa suffered from major heart problems and related conditions in her later years after spending her lifetime caring for and serving the poorest and sickest people in her country. In the end, a heart attack ended her life.
https://en.wikipedia.org/wiki/Mother_Teresa
Budda was a monk, a sage and a philosopher who spent his adult life teaching others to live quiet and peaceful lives, focused on inner self development and how to detach from the external material world. He died of old age at the age of 80.
https://en.wikipedia.org/wiki/Gautama_Buddha
And the list goes on. You can probably think of others to add to this list.
Name any person, teacher, healer, peacemaker, or caregiver who has ever lived a “good” or useful life on this planet that did not deal with or face the dark and ugly side of humanity at some point during their lifetime.
I’ll bet you can’t name one.
So why should any of us (including those of us who call ourselves “people of faith”) think that we are exempt from the harsh realities of life? Are we any better than any of the people named above?
No. Real life is messy, painful and frankly, hard for many of us to endure or recover from. We all suffer at some point in our lives to varying degrees. Suffering is a fact of life. No one is exempt.
Despite all of the above, I do believe there is hope to be found in the middle of our often painful journeys as caregivers. And sometimes, there is actual JOY and PEACE in the middle of life’s storms that defies human understanding.
In scripture it’s called, “the peace that passes all understanding”.
I think we can all use some of that kind of divine peace from time to time, don’t you?
Finally, there is always a life lesson to be learned from any form of suffering. Sometimes we must dig deep to find it, but it is always there, hidden somewhere, if we are willing to seek it out and face the truth.
And it is those very life lessons I learned as a caregiver that I strive to share with you here on this blog.
In addition to the stated mission of supporting family caregivers and their loved ones, I have an even larger vision for this blog and the upcoming book.
Read on to learn MORE . . .
AS CAREGIVERS, WE SEE “BEHIND THE CURTAIN” ON A DAILY BASIS
As caregivers, we often see and experience what many able bodied people never see or experience.
To be frank, many people hope they will never find themselves in a caregiving role due to tragic life circumstances.
But the reality is, it happens to someone, somewhere in the world every day.
When we become caregivers for the first time, we suddenly begin to see many imperfections in ourselves and in those we care for on a daily basis. Just like in a committed marriage, to be a caregiver is to begin to understand our own selfish nature and hopefully, learn to overcome it.
CAREGIVERS NEED TO LINK ARMS AND UNITE!
As family caregivers we also begin to see the imperfections of the authorities and government systems of our day who promise to help, but in the end do little more than put a band-aid on a stab wound.
That MUST change.
I’ve often said that when it comes to government agencies (whose stated purpose is to provide assistance to at-risk populations and those of us who advocate for them), in reality, it seems to me that the entities who are in power frequently hope we will either give up, go away or die before they actually have to make good on their promises.
Sometimes, that causes us to become resentful, angry, impatient or depressed. Sometimes we feel helpless or discouraged.
Much of the time, we feel that no one else cares or could possibly understand the complexities of what we are going through at any given moment.
That’s why it is so important for us to join together and support one another.
Because on a deep heart level, we “get” what other caregivers are experiencing. And we know how personal dynamics can play out or shift between ourselves and those we care for, both in good times and bad.
We also know how tough it can be to stand up and fight with government agencies when things get rough and they keep stalling or refusing to help.
Let’s face it, it’s tough enough just to make it through some days as a caregiver as it is and retain any modicum of sanity! To add the challenge of confronting those who are supposed to be helping us is mentally and emotionally exhausting.
In reality, there ARE millions of other caregivers around the world who understand and are experiencing similar struggles. We just may not have met any of them personally . . . yet.
That is why I am grateful for the internet today.
Because of this amazing technology, we CAN build a supportive online community today that reaches to the ends of the earth, regardless of where any of us live.
If ever there was a GOOD time to be a caregiver, it’s now.
Resources abound. Granted, finding those resources can sometimes be a challenge, depending on our location and personal situation, but they DO exist.
THEN VS. NOW
Why do I bring this up?
Because back when I first became a full-time caregiver in 1983, the internet did not yet exist.
My family and I lived in a rural part of East Texas, an hour’s drive one way from any major city or resources. The small “cow town” where we lived had a population of under 3,000 people.
There were NO resources for lone family caregivers, certainly NO respite services, and specialized medical services in my local area were non-existent. I know because I desperately searched for them.
That was also before the Americans with Disabilities Act was signed into law.
So, there were no laws back then stating that businesses had to provide physical access to public buildings, designated accessible restrooms or even wheelchair ramps on public sidewalks.
NOTE: Please know that the part of my personal story I share below is not in any way to make you feel sorry for me. It’s just the reality of the way things were back in 1983 when I first became a family caregiver. I share it here only to provide those who are currently caregivers with a point of reference and comparison.
Less than a year after my husband’s spinal cord injury, I found myself isolated on a 265 acre farm in a small 50-year old farmhouse with a disabled husband who was paralyzed from the shoulders down, and wheel chair bound for life.
I was also the primary caregiver responsible for raising our three year old daughter.
In addition, I didn’t know anyone in the town where we lived when we first moved there from the city after my husband’s injury.
I certainly did not have a network of emotional support other than family, most of whom lived hundreds of miles away and whom I only saw once or twice a year during holidays or other special occasions.
Other than that, we occasionally spoke on the phone.
However, that was also long before cell phones existed, so long distance phone calls from what we now call “land lines” were expensive, and therefore were kept to a minimum in our house.
And I didn’t personally know any other caregivers.
Read the blog post Hurricanes and Halos for additional details of the introduction to my story.
YOU ARE NOT HERE BY ACCIDENT
Congratulations! You made it through my “Word of Caution, Disclaimer and More” post and you are still here!
That tells me that you are a person who is:
a) Not faint of heart when it comes to dealing with raw reality.
b) You also try to be as non-judgmental as possible and,
c) You are generally tolerant of other people’s belief systems, even if they differ from your own.
That is why I can say with confidence that you are not here by accident.
I believe you have been drawn here by invisible forces. Call it divine providence, the Creator, the Universe or any other force of nature you care to name.
Bottom line: You are HERE on purpose and for a specific purpose.
A CLARION CALL TO ACTION
Today, much has changed for the better in most communities when it comes to caregiving.
And yet, there are still so many newly disabled people and first-time caregivers who struggle to navigate the complex systems of medical care, public transportation, and government agencies that were originally (on the surface at least), established to help people who cannot (or can no longer) help themselves.
And their numbers are only going to grow significantly over the next few decades. Current statistics tell us that older people will soon outnumber younger people by a wide margin all over the world.
That’s why I believe you were drawn to this blog, the book, and/or the related social media pages.
Your story needs to be told. Your voice needs to be heard.
It is time for a national (and eventually a worldwide) movement comprised of former and current caregivers to rise up and speak out. Its time that we advocate and educate others on the topic of caregiving.
It’s also time for us to care for and promote physical, spiritual, emotional and mental healing and well-being for ourselves and for other caregivers. After all, if WE as family caregivers are broken, we can’t serve others.
And when family caregivers are not able to serve their own families in any society, it has the potential to cripple social service systems around the world.
The powers that be can easily ignore one, two, a dozen or even hundreds of voices who are crying in the wilderness about the needs of caregivers.
But they will not be able to ignore the approximately 133.2 million family caregivers (living in the U.S. alone), like you and me who are linking arms and working together to make the world a better place for all caregivers and the people they love and care for every day.
WELCOME TO THE MOVEMENT!