View From The Hospital Bed

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. 

How “Dementia Sucks” Got Published

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.

Crying in the Bathroom…

Photo by Thought Catalog via Unsplash.com

…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?

  1. 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
  2. Finding qualified candidates to fill the open jobs is extremely challenging 
  3. Retaining excellent employees is difficult in light of the number of opportunities being offered 
  4. If you don’t provide a supportive atmosphere for caregiving employees, they will leave one way or another
  5. 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?

  1. Their lives are in danger: 50% of family caregivers of people with dementia die before their loved one
  2. Their physical and mental health are threatened
  3. 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
  4. 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
  5. Their marriages are threatened
  6. 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

  1. Encourages employees to speak about their situations at home
  2. Provides support and resources to employees in caregiving situations
  3. Trains management to recognize and respond to the problem
  4. Enables applications for family leave
  5. Offers cross-training and the creation of teams so staff-members can fill in for each other
  6. Allows for remote work if at all possible so caregiving employees can spend more time at home
  7. 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.