Here’s a link to the interview. Enjoy!
Even as a young girl, I dreamed of being a published author. Over the years, I’ve written a lot of stuff, simply because it’s my nature to write. I also have this habit of wanting to share solutions when I find them, so I have spent considerable time teaching and educating as well.
My subject matter has varied, because my life has offered a number of “teachable moments.” When I was a graphic artist, I learned a lot about design and the technical aspects of taking an idea from brain to computer and then figuring out how to make it translate to ink on paper (and later, as web content and video). I taught at companies, for associations and as an adjunct professor at institutions of higher learning. I even wrote most of the questions for the Adobe Certified Experts exam for Illustrator CS3.
The caregiving phase of my life, when I devoted a great deal of time, energy and resources to helping my aging parents, was nothing I had anticipated. When my father got sick, I was taken by surprise. My parents were living in Florida, and while we “visited” frequently by phone (I live in NJ), everything seemed fine until I saw my father in person in 2003. Yes, he did a great job of covering up is infirmities. I realize that I was also complicit in his deceit: denial is a very powerful defense mechanism, and I didn’t want to believe my father was as sick as he was.
Losing my father in a relatively short period of time (just over a year) was painful, but illuminating. I learned a great deal about my parents’ situation and what was required in order to effectively advocate for my loved ones.
My mother lived on her own in Florida after my father died, but my husband and I spent our vacations visiting her, helping her, making sure her needs were addressed. When her cognitive decline became evident, we invited her into our home and I began taking care of her hands on.
The following five years were extremely challenging. Living with a parent when you are an adult is unnatural. Dealing with a person whose cognition is failing is one of the hardest things a person can do. They are still the person who drove you nuts in your teens, who second-guessed you as an adult and is undergoing changes before your eyes. They will make you question your own sanity while they are losing theirs.
Journaling was a natural activity for me to combat the insanity I confronted each day as my mother’s caregiver. At one point, I brought her back to her apartment in Florida to sort through her clothes and bring back items that she could use in New Jersey. It was her last trip to her last independent domicile. And I was all alone with her. So I started a blog, where I recorded my ravings and put them out to the world in case someone, somewhere, might find value in my perspective and the things I learned along the way.
My mother died in April, 2015, and I no longer needed to journal about caregiving. I stopped blogging.
A year after her death, I revisited my blog and was able to appreciate what I’d written as a reader might. I found myself enjoying the ride. I was pleased with the calibre of the writing, and I was glad to have a record of all we had been through. So much had become blurred in the heat of crisis.
And I thought “The book everyone has been telling me I need to write already exists.” It just needed some polish.
So I grabbed all the blog posts and got to work cleaning it up, discarding things that might hurt living people and turning it into a manuscript.
Then my husband, Bob, got sick. In January, 2017, Bob landed in the hospital with several life-threatening conditions. I was thrown back into full-time caregiver mode. I couldn’t stay focused on building my business. But I could work on the book at off hours, mostly at night when I couldn’t sleep.
After five months on disability, Bob improved sufficiently to return to work. At a family get-together, I saw my niece, who is a copywriter for a well-known media agency in NYC. I told her about my book and she asked if she could read it. Could she? I sent her a PDF to read.
She got back to me quickly with positive feedback. (She is not one to offer praise unless its warranted). I was encouraged to go forward and committed to finding a publisher.
I set about doing traditional market research. I purchased a copy of “The Writer’s Market” and began crafting my pitch letters, looking for the right publishers. I searched for books like mine. And then I received an email.
A fellow to whose blog I was subscribed wrote about how he got HIS book published. He had self-published his first book, but he wanted a publisher for his next work of non-fiction. He had gotten an offer, but it was less than ideal. And then he read an article about “book shepherds” in the San Francisco Book Review.
The first expert cited in the article was the person the author contacted. He happily reported that this wonderful resource helped him to find a much better deal with another publisher.
And then I thought “Why wouldn’t I contact her?”
So on July 5th, 2017, I sent an email to Debra Englander, explaining who I was and what I hoped to accomplish. She asked me to send her what I had, and we would talk Friday.
On that Friday, we spoke and she told me she loved my book and thought she had a publisher who would be interested. I was shocked, but pleased. What was next?
She would send me a contract. She would write a “mini proposal” to the publisher and see what they thought.
I signed the contract, mailed it with my check and hoped for the best.
Twenty days later, I had a deal with Post Hill Press. And they would publish it in May 2018.
I worked with the editors. They created a cover I absolutely loved. Together, we honed the manuscript into a real book.
In April 2018, I received the first copies of the book. Holding the actual product in my hands was a thrill that’s difficult to describe. On April 29th, I gave a book talk at a new dementia home in Paramus. On May 15th, 2018, the book was out for all the world to see, and I delivered a talk to a women’s group I belong to.
Since the release of the book, almost a year ago now, I’ve learned a lot about the publishing world as it exists today. I have promoted the book at bookstore talks, podcasts, TV shows, blogs, webinars and more. I am evolving my business toward professional speaking and training. The real revelation was that getting published wasn’t the finish-line; it was just the beginning.
Gratitude for the gifts of my journey permeates my life. Being able to use my experience to help others is truly gratifying. There’s a lot more to do, but having the book out gives me credibility and a platform to keep disseminating the message: “Don’t Walk the Caregiver Road Alone.”
If you’re an aspiring author, I encourage you to find your voice, find the courage to share it with others, and take pride in your accomplishment. Writing a book, however you do it, is not easy. Showing it to others requires courage that relatively few possess. But if you have something to say, the act of documenting your message is cleansing. The act of sharing it can be world-changing, even if it’s for just one other person. And that’s a gift that only you can give yourself, and to the world, if you dare.
…And other symptoms of incongruent workplaces
When I first began caregiving my demented mother in 2010, I was in no position to work outside my home. I had been a self-employed graphic artist for many years. My husband had a full-time job with good benefits, affording me the ability to work from my home-based office, take care of the house, my pets, and my mother, managing her care while performing duties that kept my clients happy.
In 2012, my husband lost his job, and we had to pay COBRA (paying both the employee and employer’s share) for our health insurance while we figured things out.
I had become rather adept at navigating long term care insurance, medical insurance and other bureaucratic systems on my mother’s behalf. And I had, at that point, placed Mom in a memory care facility. But I was not well-versed in financial instruments and was disappointed in the alternatives I had been offered in pursuit of ways to preserve my mother’s resources for her care. I investigated ways I could become better educated and possibly earn a salary with benefits.
The financial services company I employed for my household needs offered a program for business owners looking to make a change. I applied and they recruited me. They paid for my education and enabled me to attain securities and life insurance licenses. I studied hard and passed all the exams on the first shot. I was appointed and was expected to bring in new accounts right away.
During my first year, I was paid a salary with benefits, including health insurance for my husband and me. That was a big relief. And I was encouraged to go “out in the field,” to acquire new business. My appointments granted me some flexibility to see and care for my mother. But there were also a lot of demands on me to be in the office for meetings, paperwork and training sessions.
The trajectory of my mother’s illness often called upon me to drop everything and go wherever she landed, because she couldn’t speak for herself. My employers knew my situation, and in fact, found it a compelling reason to hire me. My story was a powerful “why” in talking to potential clients about planning, particularly for long term care.
The summer of 2014, my mother was hospitalized twice. In July, she had sepsis (a blood infection), which required her to be restrained and medicated. I really thought she was going to die then, but she recovered. After a challenging period of dealing with a bad rehab facility and getting her transferred back to her home with physical therapy provided there, she did better. But I was having to take a lot of time off to coordinate.
With her condition improving, I dared to consider spending more time focused on my profession. Then, in August, I got the call that Mom was bleeding profusely and was on her way back to the hospital.
My mother had a rare, undiagnosed disorder that produced too many red blood cells. Her body responded by rupturing her intestines to compensate. It was time for hospice.
And that was about the time I found myself weeping in the bathroom at my office. My employers were pressuring me, writing me up for poor job performance. My mother was dying and needed me to be with her. I didn’t know which way to turn.
Emerging from the sanctity of the ladies’ room with red-rimmed puffy eyes, I ran into my manager in the hallway, and he asked me what was wrong. I could barely get the words out.
He said there was a way to get me the relief I sought. He gave me the phone number of a benefits administration team, and they connected me to resources that enabled me to apply for family leave. I could take up to twelve weeks off without jeopardizing my position. And because I live in the state of New Jersey, I could also apply for benefits that would pay some compensation. I would have to fill out forms (corporate, federal and state) and get signed statements from two of my mother’s doctors certifying her need. The important thing was I COULD take time off to do what I needed to do for my mother and myself.
I ultimately left that job, but at least I had time to make an informed decision beforehand. I was able to weigh the pros and cons. And I left on good terms.
Since then, my life has changed a great deal, but the memory of that day in that restroom stays with me. I know that there are thousands of people, working outside the home and caregiving someone inside their home, faced with a lot of the same angst I faced. I want to shine a light on this issue, both for the employees who are suffering and the employers who rely upon them.
There are over 43.5 million people in the U.S. providing unpaid care to another person. With the ranks of the aging increasing by 10,000 per day, and the vast majority being unprepared for a long term care event, the need for adult children to intervene and provide care is going to skyrocket.
Why should employers care?
- The sheer number of people in need indicates that virtually everyone with a family will have some kind of caregiving responsibility at some time in their lives
- Finding qualified candidates to fill the open jobs is extremely challenging
- Retaining excellent employees is difficult in light of the number of opportunities being offered
- If you don’t provide a supportive atmosphere for caregiving employees, they will leave one way or another
- Employers have families, too. Without understanding the risks, they may succumb to the demands of caregiving their own aging loved ones
Why should employees care?
- Their lives are in danger: 50% of family caregivers of people with dementia die before their loved one
- Their physical and mental health are threatened
- Their careers are threatened: many caregivers lose their jobs because they never disclosed their situation to their employer and their performance was suffering. Many others leave without notice during a crisis
- Their futures are threatened: if they aren’t careful, they can easily spend everything their loved one had on care, and wind up dipping into their own resources, impoverishing themselves
- Their marriages are threatened
- Their children suffer, too
So, what can be done?
First thing, caregivers need to recognize that they are, in fact, caregivers. It may sound silly, but a lot of people in that situation think of themselves as just being “good kids.” It usually starts slowly, with “favors,” but can grow quickly when there’s a health crisis. So know this: if you are providing support to another adult, you ARE a caregiver.
Second, employers need to align with employee’s needs and develop a policy that
- Encourages employees to speak about their situations at home
- Provides support and resources to employees in caregiving situations
- Trains management to recognize and respond to the problem
- Enables applications for family leave
- Offers cross-training and the creation of teams so staff-members can fill in for each other
- Allows for remote work if at all possible so caregiving employees can spend more time at home
- Sponsor workshops and seminars for employees to obtain the knowledge they need to become legally-appointed and capable advocates for their loved ones
If you’re an employer who is curious about enacting the kinds of policies discussed here, there are resources available. And if you’re an employee (or an employer) who has aging loved ones, I encourage you to seek help with your questions. Please don’t wait for a crisis, or you might find yourself crying in the bathroom.
This blog was originally posted on the “Light Of Gray” in 2014.
These days, I am reading the powerful Stephen Covey classic “The Seven Habits Of Highly Effective People.” The principles outlined make so much sense to me, I feel as if everyone else probably knows them already. But in reality, few embrace proaction and effective living. This knowledge comes, in part, from my membership in the caregiver community.
Family caregivers are some of the nicest, most sincere, hard-working and generous souls on the planet. They are also some of the least healthy, most angry and stressed out people who draw breath. I am often frustrated by the things they say and do, because they are quite clearly destroying themselves. Too many of them die young. Many more injure themselves permanently and wind up needing care (too often without the necessary resources or plans in place to enable their own adequate care).
To drive the point home, I offer the Seven Habits of Doomed Caregivers:
1) Always do exactly what your loved one asks as soon as they ask no matter how unreasonable it might seem. After all, they are your (fill in the blank: mother, father, grandparent, etc.) and they always knew best (at least once upon a time).
2) Do everything yourself. No one else cares enough and nobody can do it all as well as you can, right?
3) Never take a day off. You’re strong. You can handle it. Your loved one can’t go on like this forever, can they? Maybe it just seems like forever.
4) Never ask for help. People will only let you down. If you ask and they say “no,” it will only make things more awkward. If they say “yes,” they won’t do what they promise. Or they’ll make you sorry you asked.
5) Don’t see your doctors. It’s hard enough getting your loved one to their doctors, so you don’t have to go for your own visits. Who has the time? You’ll be fine. Until you aren’t.
6) Don’t vent. People will think you’re crazy. Or weak. Or exaggerating. So hold it in. Until you can’t and explode.
7) Give up doing everything you enjoy in order to spend the maximum amount of time with your loved one and to save as much money as you can. Life is short but seems much longer when you don’t have any fun, ever.
I see people making these terrible decisions all the time. And there’s no pay off, no good reason for it. They usually have options; they just choose the wrong ones out of some misguided idea that the old rules somehow still apply. THEY DON’T.
Once a loved-one becomes ill and you are in charge, TAKE CHARGE. If you are caregiving a parent, once you start paying their bills and taking responsibility for your parent’s life, you must also have AUTHORITY. If mom or dad make unreasonable demands, your life-long programming will compel you to comply. But you must learn to fight the impulse. Because what they think NOW is generally irrelevant. They are failing. They are frightened. They want control. But they are no longer capable. You need to take control. That’s not easy, but it’s essential, for their survival and yours. You are the adult now. You have the experience, strength and perspective to make the best decisions. They no longer do.
And if you need help, ask for help, hire professionals, and educate yourself as to the resources available.
Facing caregiving alone, following the seven habits outlined above, is a recipe for disaster. Please don’t succumb. Life is too short to be squandered on wreckless caregiving. Be more effective and proactive. Develop a team. You have the right to live your own life, on your own terms. It’s a shift you can make happen if you have the will. Use your strength wisely.
That got your attention!
You may be wondering, “is she saying that watching TV causes brain damage?” Well, not exactly (but I’m not saying it doesn’t, either).
After years of studying what actually causes cognitive decline, research shows that a number of lifestyle choices have an impact on the development of degenerative brain diseases, like Alzheimer’s Disease. The big question, to me, is why do we make these lifestyle choices in the first place?
The answer, in large part, has to do with information we derive from watching television.
We may laugh about it, but the phrase “AS SEEN ON TV” remains a powerful reminder of just how ingrained the veracity of anything ingested from that medium is regarded in the minds of the American public.
Commercials shown on broadcast TV in the 60s and 70s revealed a desirable life filled with modern conveniences, including delicious, easy-to-prepare foods and marvelous labor-saving devices. The American Dream as I knew it was shown in vivid detail, in living color, on the ever-illuminated 19 inch screen in my family living room.
A diet rich in high fructose corn syrup, sodium and preservatives was tantalizingly promoted by the marketing geniuses of the day.
My loving parents demonstrated their deep affection for their family by providing the kinds of foods that were portrayed in those glowing scenarios. It never occurred to us that Madison Avenue had anything nefarious in mind. They showed us what we had to have, and we dutifully went out and filled our shopping carts with these yummy, brightly packaged consumables.
Some red flags went up when I was in the fifth grade and the school nurse called my mother in for a conference regarding my weight. I was a fat kid. I needed to go on a diet when I was 10. I was introduced to calorie counting and cyclamates. One of the worst days of my young life was when cyclamates were banned for being carcinogenic. I had really enjoyed the foods that were flavored with those less-than-wholesome substances. Other sugar substitutes came along (aspartame and sucralose) to take their place in my dietary lexicon. After all, how enjoyable is life without diet soda?
I have fought weight gain my entire life. My quest for health has lead me to embrace more physical activity and a diet that goes against everything that constituted “normalcy” in my childhood. And this direction has developed as a direct result of having witnessed both my parents’ sad endings.
My father suffered myriad illnesses that had to do with his smoking (another habit promoted by Madison Avenue in an earlier time), consuming processed foods and not getting much exercise. He succumbed to congestive heart failure and vascular dementia, among many other things. He died at 76.
My mother, who had Type 2 diabetes, high cholesterol and high blood pressure developed dementia with psychosis and died at 86.
Everyone dies. But the suffering endured by my parents, and their descent into dementia was prompted by their diet and lifestyle. Understand, I am not blaming them. They were pursuing the American Dream, as seen on television. Nobody told them how the story would end for them. And I don’t know how differently they might have departed had they known what I have since learned.
I do know that food is medicine (or poison). What we consume plays an enormous role in how our bodies repair themselves and how we age. We don’t have to develop dementia. We can have some impact on how we mature. Unfortunately, the makers of the stuff that’s actually good for us don’t have a whole lot of money to advertise to us. They’re too busy struggling to make a living. So instead of leading a life that incorporates healthful food and smarter lifestyle choices, if we watch TV, we’ll be shown commercials promoting drugs that address the symptoms garnered by consumption of “convenience foods” packed with preservatives and chemically-derived flavor enhancers. And we’ll think of these as “normal.”
If you “ask your doctor,” as the commercial voiceovers suggest, they will likely confirm what you see on the screen, because they are taught to treat symptoms. The medical school curriculum does not include nutrition. They learn about conditions and how to treat them with drugs and procedures. Root causes are not discussed.
And turn off the TV. That’s probably one of the single best things you can do to prevent Alzheimer’s.
Teaching is a pursuit I really enjoy. Creating syllabi, designing presentations, setting the pace and structure for the instillation of concepts are all fun for me. I have a lot of information to share, and having the opportunity to disseminate what I know to enthusiastic seekers is a privilege.
This year, at Bergen Community College, through the Institute for Learning in Retirement, I am conducting a course called “Dementia Sucks: The Class.” My book is the basis for the material, but I’ve gained a great deal of new insights since the book’s publication, and I’m eager to share them.
While I’ve delivered a number of classes and talks on this subject matter before, I have to admit this session was a little unsettling for me. I like to ask attendees why they come to my talks to ensure that I hit on topics people really want covered. This time, I got a surprise.
Two of the eleven students in attendance had been diagnosed with Alzheimer’s Disease. This was a first for me. I am accustomed to speaking to people who are caregivers, or who are in the red zone for becoming caregivers. One gentleman was accompanied by his wife. The other was still high functioning enough to drive and conduct an independent life, but he was clear that he had this dire diagnosis and wanted to learn all he could while he could.
The way I structured the course, the first class was designated to introduce my qualifications, define dementia and outline the most important considerations for potential caregivers and potential dementia sufferers before the worst happened. The second class was about preparation and the third was about surviving. And I promised that in the last session, I would be discussing the latest exciting research and suggesting resources.
I had to gently change up my approach, because I didn’t want to upset the folks who were already in the grasp of this dreaded disease. And their situation is more urgent. Waiting to take action is particularly dangerous for them.
Something Substantial to Offer
In the last few weeks I have been lead by several different people to look at “The End of Alzheimer’s” by Dr. Dale Bredesen. I had noticed this book at my library recently, but I was in the middle of another book on the subject, so I passed it up.
Then I got followed by someone on Instagram whose handle is “Alzheimer’s Has Been Reversed.” I didn’t pay much attention, because I thought it was probably a scam of some sort.
At a business seminar, I spoke with a wellness coach following his talk. He suggested I read Dr. Bredesen’s book.
And then, leaving a business expo in New York I met another wellness coach. We actually had dinner together and she recommended the book.
Looking more closely at the Instagram message I’d initially disregarded, it was, in fact, about Dr. Bredesen’s work!
So I went back to my library, found the book and took it home. Apparently, everything I believed to be true about Alzheimer’s Disease, that it was caused by a variety of ailments and could be treated, successfully, with lifestyle changes, better nutrition, supplements, exercise and meditation, was empirically documented.
I don’t know anyone personally who has benefited from Dr. Bredesen’s protocol, but the reputable sources validating the work made it clear that it is legitimate. I emailed a link to my student (the independent gentleman) suggesting he investigate further.
The universe is miraculous, and I am grateful to be witness to this incredibly important development. I suspect the mainstream media will not be announcing this discovery anytime soon. There’s too much money to be derived from advertising the ineffective drugs that don’t work, and all the expensive ancillary services that reap profits from the misery of others.
It is my sincere hope, that while the rest of the world shakes their head over the latest political affront, that we will quietly guide those in need to this non-medical solution to a hideous epidemic and solve it before millions more succumb.
And I’m happy to do it, three to twelve students at a time if need be.
Most of us have heard of “The Sandwich Generation.” This refers to the phenomenon of people caught between generations, helping their children achieve maturity and independence while also having to assist their aging parents. The pull on the attention of these people, who often have demanding careers and businesses, can not be overstated.
For those who run businesses, the problem is compounded, because they often employ staff with similar issues. Those workers are often in the unfortunate position of having to take time to assist their own family members. Distracted by their outside responsibilities, they may be fearful of revealing their situation to their superiors, concerned that they might lose their position if the true nature of their obligations was known.
With 10,000 people turning 65 every day, and 70% of those aging people destined to experience a long term care event, the numbers of family caregivers will increase exponentially. So the impact of this trend on business and the economy will escalate.
If you have never been a family caregiver, it’s difficult for you to grasp the enormity of the task. Depending on the circumstances, the person giving care can be in deep distress and potential in danger. And it’s absolutely imperative that everyone becomes aware of the frightening potential of this approaching epidemic.
The Meat of the Sandwich
Let’s first look at the basic caregiving situation. In virtually every family, there is usually one person who takes care of everyone else. Usually, it’s “Mom.” But 40% of the time, it’s “Dad” (especially if there is no Mom or if Mom is the one who is sick). Typically, this person works, either full or part-time. There may be a crisis, like a fall, or a critical illness, that requires immediate intervention by the caregiver-in-waiting.
There’s also the “sneak attack” care scenario: aging parents start asking for “favors” from their adult children. They need help understanding something: an unusual piece of mail or threatening phone call; news from a medical provider; a change in service from an insurance provider. Then it gradually morphs into escort services, rides to therapy, picking up items from the grocery store or pharmacy, and before you know it, you have a full-time, unpaid job that eats your life.
It’s not uncommon for these caregivers of aging parents to also have children. The expectation for those with healthy kids is that they will grow up, graduate from school and become independent. That is not always the case. They may have difficulty finding work in their chosen profession, or take a job and leave it, only to return to the nest. Sadly, many develop substance abuse problems, adding another stressor to the mix.
These are just some of the typical situations vying for the attention of family caregivers. These people also tend to have careers and subordinates who work for them (who may also be family caregivers).
So, for the “Sandwich Bosses,” the people who run companies or departments, what are some ideas for improving their lives? Here are some ideas:
- Put yourself first. If you go down in flames, so does everyone else you care for or supervise.
- Hire the right professionals to do the things you don’t know how to do, like wills and estate planning.
- Learn to say “no” when the demands of others are becoming too much.
- If it’s bad for you, it has to be just as bad, or worse, for your subordinates.
- Create an environment where it’s safe for people to talk about their situation. No one should have to fear losing their job for having to care for loved ones.
- Teamwork is essential: cross-train employees to cover for each other so business can continue with minimal interruption.
- Remote work: allowing employees to work from home can go along way toward easing stress on family caregivers.
- Identify resources: there are places people can go to solve a lot of their problems. Being able to provide guidance toward support services and establishing formal policies can be a huge help to everyone involved.
These are just a starting place. Caregiving is complex and different for every family. Understanding what you’re up against, practicing self-care, and supporting valued employees can keep you and your enterprise moving forward as the demands of a growing population of people in need encroaches on your productivity. By preparing for it now, you can meet (meat?) the challenges as they will undoubtedly be delivered at your doorstep.
For more on this important topic, listen to author Tracey Lawrence speaking with Tiana Sanchez on “Like a Real Boss”.