Some people are shy. I used to be, but found no satisfaction in it. So I’ve been sharing my story lately and now that “Dementia Sucks” has attained bestseller status, folks are listening!
Here’s a wonderful interview with Markos Papadatos of Digital Journal talking about my caregiving journey, how to led to writing the book and creating a brand new course for people about to become caregivers to aging love ones. Check it out!
You were doing fine. Your folks seemed fine. Everything was moving right along, and then COVID happened. Suddenly, the kids are home all the time. You’re trying to work from home. And your parents, who’ve been so independent and on top of it all, are showing their vulnerability.
It’s more than a little disconcerting. You haven’t really given this a whole lot of thought but, dang, they aren’t going to be around forever and maybe, just maybe, there are things about Mom and Dad that you really should know but haven’t even considered asking.
Now is your golden moment. You have an opportunity to ask them all those questions you’ve been avoiding, but what should those questions even be? HOW do you even approach the conversation? And what do you do with that knowledge once you have it?
Here’s where you should go, right now: the Family Care Survival Course. This online 2 hour on-demand video curriculum will walk you through the tough stuff and give you a grounding in how to do this complicated stuff with greater success and more satisfying outcomes.
Designed by Tracey S. Lawrence, author of the ground-breaking book “Dementia Sucks” specifically for the adult children of aging loved ones, this course is packed with great, actionable information. Delivered in Tracey’s down-to-earth, approachable style, you’ll come away with a strategy to get your family moving in the right direction!
A big part of my life is devoted to educating people. My mantra for 2016 was about the need for everyone to appoint an advocate. When you get sick, you can’t fend for yourself. HIPAA laws require that you put your choice in writing so your advocate will be able to do their job should the need arise. My husband and I have done this, and we are clearly in the minority.
On New Year’s Day 2017, my husband, Bob, had a health emergency. Miraculously, I was able to find an internist who was willing to come to our home and see him on that holiday Sunday. Upon examining him, this doctor sent us to a hospital that, while less than convenient geographically, admitted him with relative speed and got him connected to all the specialists, tests and treatment he would need to recover.
Bob remained in the hospital until January 11. He had four roommates during his stay. Three of them were single males with no advocates. Their fates were all frightening and sobering.
The first roommate was in great distress when I came for my first visit to Bob’s semi-private room. He had not been fed in 27 hours. There were no doctor’s orders for meals and no one to follow up for him; just the nurses and staff, who were overwhelmed caring for lots of other patients. He was alone and apparently had no primary care physician. This guy was pulling out his IVs as he howled in anguish. A nurse helped him removed his tethers to prevent him from hurting himself and the fellow immediately checked himself out with his condition untreated.
Roommate 2 came in with COPD and pneumonia. Single and apparently lacking a primary doctor, he had stumbled into the ER in crisis and was admitted. Over 24 hours later, no meals (but he stayed long enough to finally enjoy the “cuisine”). No advocacy. He did receive some treatment but needed to go home. His pets had been unattended for the two days he’d been receiving care. With outdoor temperatures in the 20s, he lived two miles from the hospital and had no money for a cab ride home.
Roommate 3 was a young man with several doting female family members (his mom, grandma and an aunt). There was not a lot of room for all of us, and there were a lot of strained smiles and “excuse me”s getting in, out and around in the room. But that fellow apparently received adequate care and was released within two days with his mom to help him.
The saddest case was an elderly gentleman who was in my husband’s room for just a few hours. He had been a heroic policeman who had disarmed killers and saved lives. Having lost use of all of his limbs over time, his family abandoned him. He brought Bob first to anger with his protestations and then to tears after hearing his story.
As I managed Bob’s care from the outside, I was impressed with the internist who got us there. He was communicative, respectful and responsive. He coordinated with other specialists he respects. He got things done and kept his eye on the big picture. This is someone I want on my team.
This challenging return to caregiving has made me refocus on an important priority: starting with the right doctor. Most of us begin with our insurance and go from there. Searching the “provider locator,” we try to find a network doctor who will serve us along with suitable “in-network” facilities as we need them.
Unfortunately, playing the game from the insurance company’s perspective, we are at the mercy of actuaries rather than medical professionals. The decisions being made are based on finance, not health. And that’s a dangerous approach. The needs of the patient, the human being in question, should always come first. But that’s not how the current system is built. That’s why it’s broken. The cards are stacked against us and we often don’t realize how badly until we’re in the middle of a crisis.
So here’s what I recommend: find a good doctor. Not just someone who tells you what you want to hear. We all need someone who is more than simply qualified, but who listens and is willing to work as part of our team; someone who knows how to navigate. Otherwise, we can find ourselves stuck in the cracks of this broken system.
And please appoint an advocate: select someone you know and trust, who will stand up for you and follow up with the professionals, because we’re all human. We all miss stuff. And you need to put it in writing, or they’ll never get anywhere.
It doesn’t matter what hospital you’re in so much as who’s writing the orders and who’s coming to visit. That’s all part of a much bigger prescription that requires a team to implement.
While these suggestions may seem overwhelming, acting on them while you’re healthy is the smartest thing you can do to protect yourself. Doing it by yourself from a hospital bed is damned near impossible.
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.
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.
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.
So, if you have concerns about your health, get outside. Move. Eat more vegetables and fruits. Avoid sugary drinks. Read books. I can recommend a few if you like.
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.