My E-Bike ‘Tude Went Kaput

Happy Friday! As we ride into the weekend, I found (and love) this post from Tim Doyle on LinkedIN (it’s here, you should read it). I’ve always been a firm believer in the fact that there are only 3 things you need to survive in this world (and yes, you can disagree with me but here they are: – a warm blanket, a bike, and a library card).

My mom had vascular dementia, an ascending aortic aneurysm, and melanoma. She died in her sleep as a result of community-acquired pneumonia she acquired in the nursing home where she was. The decision to go into assisted living (hers) was difficult for all of us.

Probably one of the worst parts of it was giving up her tricycle (which she loved and rode for the last time the week before we moved). She was 84 at the time. I would ride alongside her in my Trek Bicycle 2100 ( a nice light carbon fiber thingy – not at all like her heavy red trike which I struggled to ride because it was so heavy). It was much older than the one pictured above (and red), but it had the same basket, handles, and seat.

Here’s my point: I rode a Trek e-bike (“pedal assist”) a few years ago at their shop in Rockville MD. At the time I had a little ‘tude about e-bikes as a whole and knew that they were getting some challenges from the bikers who ride on the trails in DC. My ‘tude totally went kaput on the day I took the Trek e-bike out for a spin. AND – seeing how happy my mom looked whenever I rode alongside her, I’m wondering about how Medicare can cover a wheelchair or a scooter but then only give you a 30% tax credit on an e-bike.

Bilateral movement – bikes, walking, swimming is a phenomenal activity and great for your #health. I know electric bikes are great for the environment, but I wish companies like Trek BicycleSpecialized Bicycle ComponentsRad Power BikesAventonSchwinn Fitness and Cannondale would think a little more about accommodating all of us and that yes, Center for Medicare and Medicaid Innovation Medicare and other companies would cover the cost at 100%.

E-bikes are great for so many reasons (environment, health, social) and it’s a shame that they aren’t covered under insurance like other medical equipment.

What do you think?

Do you think electric bikes should be covered under insurance? Why or why not? Let us know in the comments!

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A Legacy of Nursing

Nurses From the Truesdale Hospital Nursing School (1952)

My mom’s graduation picture from the Truesdale Hospital Nursing School is on the left. She’s the one who first coined the praise “Now, Let’s Just Think…” which is the title of this blog. She said this frequently when trying to make sure the diverse perspectives of the decisions we made were always well thought out.

I recently ran across the article documenting her graduation in the Fall River (MA) Herald News (Saturday, September 6th, 1952). It reads as follows:

Attired in their professional nurses uniforms, accented for the occaision with corsages of American beauty roses, 26 seniors recived diplomas from the Truesdale Hospital School of Nursing at commencement exercises last night in the Fall River Woman’s Club.

“The Meaning of This Commencement” was the topic of the guest speaker, Dr. Neal B. DeNood, professor of sociology at Smith College. He told the girls that their graduation was “The most important that has ever happened to you or will.”

Dr. DeNood emphasized the importance of the nursing profession as one of dignity and honor and urged the nurses to live up to it’s high standards.

The professional spirit of nursing, the speaker asserted, is of the highest morality since it subordinates personal aims and ambitions to the profession.

Dr. DeNood praised the nurses on their choice of a career which he said is devoted to the greatest thing in the world – service to humanity.

Dr. Neal B. DeNood

Not My Mom’s Healthcare Career

A few days ago I was reading an article written in April of this year on the “7 Nurse Retention Strategies You Can Use Now”. The paragraph that stood out the most to me was this one:

“It’s estimated that over 260,000 nurses leave the profession annually and are not being replaced as quickly as they leave. In turn, new academic nurses do not have the same experience level as more mature nurses. For skilled nursing, the median turnover rate is 43.9. Each percentage change costs about $379,000 on average, which means an average loss for a hospital of about $5 to $8 million annually, not to mention the erosion in quality of care.”

I was struck by the phrase “more mature nurses”. I know a few of them and they’re total rock stars who need an abundance of support right about now.

The photo above is mom’s graduation photo from the Nursing school she attended (and graduated from) in the early 1950s. That’s her on the far right. As you can see, she was a young nurse with confidence. One of the traditions upon graduation was to sign each other’s sash. As mom was a “diploma grad” and traveled across Massachusetts from hospital to hospital, many of the comments on her sash were about the different hospitals where she had worked and some of the humorous stories of their adventures at each place. They all were supportive, encouraging, and nurturing — wishing her all the best in the career she had ahead of her.

In all honesty, though, I’m glad my mom is not here to see how her field of Nursing and our healthcare system has been affected by the Covid19 pandemic (she died in 2018). I’m also glad she’s not here to be present for the suggested retention strategies that the hospital where she worked and where we both volunteered, has probably implemented to retain their team today.

Notice I wrote “hospital” — no plural — no “s”?

During her career, once she had her license, she only worked at one place; our local hospital. She was “in it” — totally loved her nursing career and was able to maintain her (what is now called) “work-life balance”. Even as she worked in acute care (in the ED, ICU, and what was then called Recovery), she had quality time to spend with us (our family) while also taking classes related to the hobbies she enjoyed — photography and gourmet cooking.

If mom worked in acute care now, I’m sure I’d never see her as she was the type of person who would have picked up additional shifts. And I know caring for just a few of the over 700,000 #Covid19 patients who have died would have taken an emotional toll on her as well. As smart, and compassionate as she was, it would have been very difficult to see her leave for work each day knowing the effect her career (and the lack of support, staffing, and equipment) would have on her life. — And I am haunted by this — knowing she would have navigated moral stress, critical thinking, and decision making like the trooper she was, it would have all taken a toll on her; my mom — “the mature nurse”.

The nursing retention strategies listed in the article were:

1. Engage from the first touch in recruiting and hiring

2. Establish a hiring standard

3. Put science in your selection

4. Adopt a structured competency nurse residency program

5. Actively support career development

6. Support clinical decision making at the point of care

7. Foster a culture of learning and competency

When I see lists like the one here of the “7 suggested Nursing retention strategies”, I often wonder what mom would have thought of it. I don’t know that she would have understood the science behind recruiting and hiring as just being a “part of the team” was most important to her; I know for sure she would have supported the importance of career development.

After she had retired she told me that she wished she had held onto her Nursing license so that she would be available to give flu shots in the community where she and my dad lived. Instead, she developed a “recovery closet” that held wheelchairs and walkers for the residents in their community who needed support and assistance after surgery or joint replacements. I remember driving her to drop off equipment and watching her as she instructed each resident on how to use the equipment based on their injury.

When she got back in the car, you could see that same confidence that is in the photo above. She loved being a nurse.

In her 80’s she made the decision to return to our home state and live in an assisted living community. As we were packing up to move she said to me “I hope they have nursing students there so I can teach them something they may need help with.”

In 2018 she developed pneumonia that she never recovered from. I remember one night when I was staying with her, she was wheezing and struggling to breathe. I got up and sat with her and patted her back as she pointed to the different places she wanted me to pat to help her feel better. “Do you want to go to the hospital?” I asked her. “No” she said, and explained to me what she had heard throughout her career — that “pneumonia is a friend of the aged that takes you at night when you are sleeping.” A few weeks later, that’s exactly what happened.

Did I tell ya I’m glad she’s not around to see the challenges her healthcare colleagues are experiencing as a result of the #covid19 pandemic?

Several months ago, I was interviewing for a position at a local hospital and was discussing some of the challenges faced in hospitals today with the senior administrator I was interviewing with. He asked, “have you ever heard the expression ‘Nurses eat their own’?” When I told him I had, he asked me what I thought “was meant by that”.

“Ohhhh…not a nurse.” I told him, thinking “nope, not gonna sign up for that class” (and even attempt to answer his question). Needless to say, the interview seemed to progress downhill from there and I never heard back about the job. Months later, that question still haunts me. When I have thought about it, I think buried deep underneath the question are unresolved concerns and issues about the challenges with retaining experienced healthcare teams.

And then I go back to thinking about my mom and the 1 hospital where she worked. She resigned from the hospital when she was asked to return to working weekends. She declined and resigned from her full-time position choosing instead to work per diem when she wanted to.

When she resigned from Nursing altogether, she still went back to the hospital and volunteered on the fund-raising committee. I remember how happy she was one day when she came home and told me that her committee had negotiated to have a nice Harley Davidson motorcycle donated to the hospital and how much money they would be able to raise from the raffle tickets they had planned to sell.

Healthcare was her mission and will always be part of the legacy of our family.

And maybe that’s where we need to start when having a discussion about retention; not just with Nurses but with our entire healthcare team. Maybe it needs to start with an authentic conversation about the mission we are on and if our mission is in line with the mission of the hospital where we would like to work. Maybe instead of the scientific data-driven recruiting and retention strategies, we need to just ask “what brings you to our hospital and how can we support you in your career, and how would you like to contribute to our mission and vision towards caring for the patients and families we serve?

And then just listen.

Take Care of Your Brain

Photo by MART PRODUCTION on Pexels.com

Lately I’ve been researching information on how to increase your brain function as well as the different things we do every day that help support our feelings and emotions. (So, if you know me – you know that this post could easily go on for pages right? – Luckily, this is not the case).

I think this interest peaked at the beginning of the #Covid19 pandemic when “sheltering in place” and thinking about that which was most important to me. I did a lot more puzzles, spent a lot more time talking to my friends and family and less time looking at screens – all of them. It seemed the birds outside of my window were getting louder and there were more of them. The neighborhood as a whole was a lot quieter as more and more of us stayed inside. During the winter, our neighborhood seemed even more peaceful with the stillness of the cold air and the blanket of snow on the ground.

It became easier to forget what day it was as they passed from weeks to months while we waited for news from the CDC, the most recent updates from Johns Hopkins, Covid tests and then, finally, vaccines. I felt like a bear – hibernating, yet also took the time to remain abreast of the news within my profession of healthcare and in hope that my friends, colleagues and their families were all safe and sound.

Now it’s nice to step out of the fog that’s felt like a cognitive ill wind in my brain for the last few months.

Along these lines, yesterday morning I received this graphic from a friend of mine which clearly shows the different things we can do to support our brain. (Created by the @FitnesstutorUK (I recommend following them on instagram because they have an abundance of great information.) This graphic shows the different ways we can nurture and support the different chemicals in our #brain.

Then yesterday evening I found myself celebrating Swing & Jazz Music and playing in the Savoy Ballroom (courtesy of the team at #google). Here’s the link: https://g.co/doodle/86vw4rj – Not only is it a nice beat, playing along is another great exercise for your brain. – Trying to get through level 3 has been a beast!! – But it will help you too!

“They’re On The Boat”

S.A.Leys Photo / http://www.SALeys.photo

Mom’s vascular dementia came on quickly – within two weeks of my Dad’s death.

It took us all a bit of time to adjust. Initially, it was hard even to figure out which end was up, and we just went day by day trying to figure everything out. After a few months, however, we settled into figuring out a routine that would work for us to get mom to all of her appointments while also keeping track of shopping and meal prep and everything that needed maintenance around the house.

It was a scrappy start, but we slowly got to the point where we could figure everything out. One of the biggest (and probably the most heart-wrenching) challenges was mom realizing that her memory was going, and then trying to navigate that with her. Eventually, we settled on the idea that “this is what happens when you get old” and not calling it something more clinical that no one was ready to hear.

It was the “elephant in the middle of the room” that we just referred to as “it’s what happens when you get old” instead of “vascular dementia.”

One day mom dropped a full glass of Merlot on the white carpet next to her chair. When it happened, she was overwhelmed, and so we had her move to the couch so we could move the chair and clean the area around it quickly. She then forgot about it.

A few days went by, and then one morning, she sat with her coffee and read the paper. As she reached for her coffee, she noticed the faint stain (which my brother and I had unsuccessfully tried to clean multiple times).
“What’s this?” she asked. “Ah, I was klutzy,” I said. “Susan Ann!” – her response. It was a lot better to take responsibility for the spill than it was to see the immensely sad look on her face that accompanied her realization that her memory was fading very fast.

I don’t know that you ever realize how intense caregiving is when you’re “in it” – only when it’s behind you, and you have time to reflect and adjust and yes, grieve and remember. For the most part, I am incredibly grateful for the time we had together. It was nice to step off the treadmill of working like a nut and calling Mom and Dad every few days to check how things were going to spending time with them in person. We enjoyed being together even if a huge chunk of that time involved driving to appointments, buying groceries, or meeting with healthcare providers and the hospice team.

Whenever we fell into the “doughnut hole” with her medications, we talked about the doctors that she didn’t want to see anymore and the medications she didn’t want to take because of how they made her feel.

Thankfully, the doctor who ended up treating her was the one she loved the most. A very compassionate man who agreed to care for her while we remained in their home – helping us and supporting us through each difficult decision as it arrived.

We laughed a lot, thoroughly enjoyed going on picnics in our golf cart, and loved watching the dolphins and manatees swimming out in Sarasota Bay (the video above was filmed during one of those picnics). My other favorite part was listening to her critique of the houses in our neighborhood, especially as it related to color choice, texture, and design.

Probably one of the things that made me the most anxious during that time was when mom couldn’t find her glasses. We had an abundance of “cheater readers” around the house, so the challenge was navigating around the cheaters to find her prescription glasses so she could read or sign whatever was in front of her. “Here, they are!” I would say while handing her the glasses I had in my hand. “No, those are magnifiers,” she’d say. It was frustrating, as many of them had the same shape frames.

Mom and Dad (who together battled autoimmune illnesses for 25 of the 60 year they were married) both have been watching over us from heaven for a few years now. A few weeks ago, in searching for my glasses, I ran across Mom’s. I thought “here they are!” – half expecting her to be sitting on the sofa in my place saying, “Oh good, you found them!”. But this wasn’t the case, and as I held them in my hand, I found myself relieved of that same anxiety I felt whenever I would be searching for them.

I decided to put them where I know I would be able to find them easily if needed – they’re on the boat.

Our Family Fauci Story

Here’s why, like many people across our country, I’m a fan of Dr. Fauci.

In 1992, my mom called at 6:00 am one morning and said: “your dad is in the hospital at the Brigham; get here when you can.” (I was living just outside of Amherst MA at the time, it took me under an hour to get there).

It was one of those calls you never want to receive.

Mom and dad were sailing and had arrived in Cuttyhunk, a small island off the coast of Massachusetts. They had just put the boat on a mooring in the harbor and were getting organized when dad suddenly fell flat on the deck of the boat and briefly lost consciousness. When he regained consciousness a few minutes later, mom was so concerned that she radioed for the seaplane to come and pick them up so they could fly back to the mainland for medical care.

Mom was a retired Emergency Department, Registered Nurse. Dad had been feeling “sluggish” for several months (initially they had thought he had asthma), but during this weekend, he felt well enough to go sailing. As mom remained more conscious of his symptoms, she decided to call for the seaplane right away.

Things Get Worse:

They flew back to New Bedford and then went to a hospital that, because of their small size and limited resources, could not fully assess what was going on, so he was subsequently transferred to the Brigham and Women’s Hospital in Boston. Within minutes after arriving into the Emergency Department, Dad had six seizures, followed by a brainstem stroke, which left him in a coma. By the time I arrived, he had been admitted to the oncology pod, still in a coma, while they continued to evaluate him. Because Brigham is affiliated with medical schools in Boston, — many teams subsequently arrived to assess his symptoms.

After days of obtaining a thorough history, tests, labs, he was subsequently diagnosed with Wegener’s Granulomatosis syndrome — (which was confirmed when his Brigham team consulted with Dr. Anthony Fauci at the National Institute of Allergies and Infectious Diseases).

After a few more days, mom and I were scheduled to meet with the neurology team to discuss whether he would ever come out of this coma and what our best next steps should be in caring for him (i.e., “do we bring him home?”, “does he need surgery?”, “what is his overall prognosis?”). From his team at the Brigham, we learned that multi-organ failure was a symptom of Wegener’s and that there were less than 500 people in the United States who had been diagnosed with it. It was referred to as an “orphan illness.”

Dad’s Wake Up Call

A few days before our scheduled meeting, one night after dinner, the phone rang. It was my Aunt (dad’s sister) asking Mom if she could bring a priest into the hospital to pray for dad. So late Thursday night before our Friday morning meeting with the neurology team, my Aunt and my cousin were with the priest who was praying over dad. At one point, he reached for my dad’s hand to hold it, and he (my dad) jerked his hand away, which caught everyone off guard as it was a sudden jerky movement from a guy that (up until that time) had been in a coma.

Fast forward to early the next morning (6:00 am Friday): I was the first to arrive and was walking into the department when the primary Doc asked me, “is the rest of your family here?”. “No, not yet,” I told her, at precisely the same time Mom and my brother came around the corner and walked down the hall to where we were standing. The Doc looked at my mom and said, “I can’t really explain what happened, but your husband is awake and conscious. They have the news on so he can be more oriented to time — but we were all glad to see him awake and talking to us”.

Because the illness he had affected his organs, he needed to stay a few weeks longer and then also (subsequently) have cardiac double bypass surgery.

All this to say — while Dr. Fauci was not his Doctor, the fact that dad’s team at Brigham and Women’s consulted with him was inspiring because of the quality of care they provided and the years added to his life.

Let’s Just Think About This

Now, whenever I see Dr. Fauci standing behind the President or speaking at a press conference, I feel a lot more relieved because of how knowledgeable he is considering the complexity of the Covid-19 virus. And then I remember my dad and the battle he fought. Because of the care and recommendations he received, he was able to live another 22 years (and celebrate his 60th wedding anniversary with mom).

Having experienced the autoimmune illnesses that we have in our family, we learned that Dr. Fauci is a guy you would want to have on your team because of his knowledge, tact, compassion, and the length of time he has been at the NIAID. It’s 2020 — he’s worked at the same place since the mid-1980s; let’s just think about that. In my mind, a 40-year career at the same place isn’t just a “job,” it’s an honorable life mission.

As my dad’s illnesses progressed over the years (and in 2009 when his symptoms worsened), we went to one of the top-notch cancer treatment centers in the country close to where they lived in Florida. The team informed him and mom that his cancer had returned, and there “was nothing we can do for him.” They told mom she should “just bring him home and watch over him.”

But — as usual, that didn’t deter mom who asked their neighbors for names of oncologists in the area. Once she found some names, she called me and said: “I have some names and was wondering if you could look them up on your computer.” I researched each name on her list a bit more and found that one of the Oncologists had completed his residency in Boston. Mom and dad scheduled an appointment and drove over to meet with him.

In meeting with the Oncologist, they learned he had been a resident in Boston (at the Brigham) for the same Doctor who had been dad’s Nephrologist (the Doctor on his team who had contacted Dr. Fauci to confirm his diagnosis). He subsequently agreed to care for dad and provided care in the form of that delicate balance of chemo and radiation, which led to his cancer being in remission for a few more years.

Looking good and fighting on at 80 y/o

As illnesses go, however — (especially when they’re compounded with his Wegener’s), Dad’s cancer ended up coming back, and that’s what was the cause of his death in 2014; years after the guys at the best cancer place said to mom there was nothing they could do for him.

Retrospectively, on the one hand (and when mom has had this conversation with other people), they have said to her, “well, the Cancer hospital was right as that’s what he died from.” On the other hand, when I think about the quality of his life from 2009 forward and the time we all spent together, I’m pleased mom didn’t listen to them. I’m glad we were able to find an outstanding Oncologist as well as a great primary care physician who had retired from Johns Hopkins and set up his practice on Anna Maria Island, close to the beach and 15 minutes away from mom and dad’s home.

I’m proud to live in a country where you have experts and highly skilled professionals like Dr. Fauci and Dad’s team at the Brigham that you can ask (or consult with) who can make recommendations and broaden your scope of knowledge. And yes, where they also support each other in hospitals and healthcare organizations across the country who continue to provide compassionate care for the patients and families they serve. While I have never met Dr. Fauci, I will always be grateful for him and our Brigham and Women’s team for their excellent care, recommendations, and follow-up.