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.
“I want to go up there”, my 95 y/o friend would tell me, as we were in the car driving during the Fall when all of the leaves were changing color. “Where?” I would ask.
“Up there” she would say again. pointing to the mountains (okay – hills) that were usually right in front of us as we would drive. Drive to a haircut appointment, drive to pick up groceries, or to go out for lunch. “It must be really beautiful in the Fall” she would say.
She told me her son had driven her to top of these hills several months ago. “You could see everything,” she said. But it wasn’t during the Fall and as the leaves were now changing colors, I’m sure she was correct when she said it would be colorful.
So this turned into a mission for me. To find the road that went to the top of the mountains that overlooked our small town of Frederick, MD. So that when the Fall came and the foliage was at its peak, then maybe instead of celebrating her birthday at a noisy restaurant, we could “grab some sandwiches” and have a picnic.
It was a wonderful idea if only I could find the road to the top.
It would have been so great if you could just point your phone to the view and say “Hey Siri, how do I get to the top of those mountains so I can check out the view?” But – in the world of Siri, you have to know what you’re talking about and maybe it’s not a bad thing to actually use that “old skill” of actually looking at a map, or in this case, a trail guide.
I told a few of my other friends about this endeavor I was on to find the road that led to the place that overlooked our town. Sure enough, one day I was driving with another friend who said “I think I know the road the goes up there”. For the next hour we drove through a few different neighborhoods and then finally found the road that led us to Gambrill State Park.
Ever been there? No? You should go.
As you can tell by the photo above, we missed the foliage by about a week and a half. But next year – next year, we’ll be the group of folks hanging out at the overlook having a picnic.
“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?
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!
We’ve had an abundance of it as a result of the #Covid19 pandemic which has made me think a lot about the way I spend my time.
What inspired me was the sharp increase in guitar and musical instrument sales as well as puzzles; the “things you can do when you have an abundance of time on your hands” activities. My neighbors and I have two large tables downstairs in a community room which presently has no less than 4 puzzles on them. It’s the coolest thing as it’s not uncommon to find boxes of puzzles on each table as many residents have been contributing to our endeavor. We now have 4 full cabinets of puzzles, most of which we have completed and some of which have been put on hold because of the colors being too close to each other.
We’re at the point where we’ll complete a thousand piece puzzle and then shift to something easier like a 100 – 300 piece puzzle that usually is left on the table after someone visits Walmart or the Dollar Store.
During Christmas, I tried to order some additional Liberty puzzles online and was amazed at how many of them were sold out. I love @libertypuzzles and I think I wasn’t the only one who thought of them around Christmas time when shopping for puzzles for family and friends.
This (below) was one of my favorites. I refer to it as the “work on the puzzle – crave coffee” puzzle. We purchased it for $1.00 from the Dollar Store.
When working on a puzzle of Venice, a group of us decided that we were never going to go to Venice because of how difficult the puzzle was – even though 3 of the people who helped put it together had traveled to Venice at least two time in the past. Whenever we would get really frustrated I’d say to them “come on you guys – you’ve been there before this should be easy!” which just made them more frustrated. When we finally finished it, back into the cabinet it went with an abundance of relief that it was completed.
I May Be A Puzzinstigator
So before I proceed further with this story, you should know that I am one of the puzzinstigators (puzzle instigators); one of the people who can’t stand it when the puzzle table has nothing on it. I may be one of the people who takes trips to Walmart, the dollar store, or Amazon to make sure we have enough puzzles to keep us occupied. It is a great bonding experience and yes, it’s nice to be able to select which puzzle should be the next one to complete.
When the pandemic was at it’s worst and we had reached 200,000 deaths in our country, I found myself feeling more depressed and quite homesick. I went online and ordered 3 puzzles, one that was a Vermont country setting, another that was a Maine Lighthouse, and the last one which was a map of New England. The writing on the New England Map was so small that there were several calls to “put it back in the box and do it later!” “I have no interest in going to New England – ever!” one of them said.
Like most of the others, we ended up completing it and this morning I sent it to a friend from home in Rhode Island because I wanted the puzzle to go somewhere where it would feel loved and appreciated – because you know, puzzles are sensitive like that.
The puzzle pictured at the top of this post has been our nemesis since the beginning of the year. One night when we were watching Jeopardy (and yelling out the answers), one of the residents came in with a paper bag and walked over to me and said “I have some puzzles that I picked up at the Church – they were giving them away for free..” “Excellent, thank you!” I said.
She pulled out three boxes of puzzles but the one above was the one that got to me. As Robert Redford said in “The Natural” (a movie I have watched at least 10 times during the last year), “there’s nothing like a farm.” The colors, texture and so many different shades of blue and green; this was a wonderful puzzle. The other thing I loved about it was that even though the puzzle was 1000 pieces, some of the pieces were quite large which made me think this would be an easy puzzle for all of us to put together and that we would have it completed in record time.
It’s now May – the puzzle was completed only a few hours ago. No less than 6 of us worked on putting it together, but on any given night we were lucky if we connected more than 5 – 10 pieces.
This past Saturday night I came to the point where I couldn’t take it anymore so I sat at the puzzle table for hours, sorting out the pieces by colors and shapes – trying to get to a place where we could have it completed. What often happens when we have puzzles like this is that some of the other residents will say “give it up, put it back in the box and do something easier” which sounds really tempting right? – except when you’re one of the people who has worked so assiduously on putting it together. Even after only a few pieces are connected, once you start, it’s very hard to look back or give up.
And I think that, for me, this has been one of the major lessons of this pandemic.
Yes, there are times when I am frustrated, times when I want to take the puzzle apart before it is complete and just put the pieces back in the box for another day instead of taking a long hard stare at colors, shapes and textures. It is easier to just say “forget it, I’ll do this later.”
It’s quite the metaphor when thinking about these last several months.
But completing puzzle after puzzle after puzzle with friends and working together while staying socially distanced, with masks and hand sanitizer has been a blessing that has kept a lot of us going and having quality conversations away from politics, Covid or the traumatic events that have affected every state in our nation.
“Here – I think that piece goes next to it.” instead of “what? you voted for (insert opposition candidate here)?”
I have a much greater appreciation for time and the value of conversations around interests and events of the day. I also appreciate the thoughtfulness of our friend who thought of us when she saw all the puzzles on a table at her church – and ended up bringing them home.
As tragic as the covid pandemic has been, and continues to be, there are several life lessons which should not be overlooked. The importance of relationships and friendships, thoughtfulness, and most importantly, the value of time.
I’m sitting here looking at the snow thinking… (I know – never a good thing right?) Years ago, around this time (probably a few weeks sooner..) the dreaded day would come when the truck arrived outside of my dad’s clothing store with our delivery of Christmas boxes. The doorbell to the stockroom would ring and parked outside would be an 18 wheeler truck filled with 108 (the most I remember) boxes of boxes.
We’d (my dad, brother and I) would have to find enough room in the stockroom to put them all – so they’d go upstairs and anywhere else we could fit them until they could be unpacked, folded together, ribbons and tissue added and then delivered to each department. It was the most anxiety-provoking of days – worse than black Friday or the day after Christmas when we had the perfect storm of store returns and sales.
Yesterday I was on the phone (for over an hour) with a woman who does grief and eldercare consulting nationally. She told me about the importance of storytelling and playing the stories of the people we love who have died – completely through from beginning to end because they always have good, funny parts in them. She told me that sometimes when we experience grief, we get to the tough part and just stop at (or get stuck with) the sadness instead of going all the way through the story to the end.
The anxiety-provoking truck of boxes filled with boxes is the worst of the Christmas box story.
The funniest was the year we decided to pull a joke on my dad and wrap all of his Christmas gifts in boxes from other stores – we had Talbots boxes, Macy’s boxes, Cherry and Webb boxes, Wilsons of Wickford, Narragansett, and JC Penny. It was funny to watch him as he became more frustrated upon opening each box – “why didn’t you just stay on the island?” he asked. We continued laughing as all of the boxes stacked up on the floor. It was at that point he stopped and looked at us – and then looked at the labels on the clothes. He realized that the majority of the labels (except for the ski clothes) were from his store.
Fast forward to several years later when we were unwrapping gifts one Christmas in Florida. He unwrapped a gift from friends of ours to see it in a Leys box. We all started laughing as the store had been closed for years – “are those things still around?” he asked.
After mom died, I was packing up her apartment at Blenheim and was at the post office sending something to my brother. The man behind the counter saw the name on my card and asked “are you THAT Leys?”. I said, “no, not the red-haired ones, we’re the other side of the family”. “I sure miss that store,” he said “I can’t find a Barracuta jacket anywhere!” – When he said it, I realized I missed all of those fun times; even the boxes of boxes. But I’m glad the stories and great memories are still with me.
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.
As Father’s Day is coming up, I’ve been thinking a lot about my Dad lately – the lessons he taught me and the fun days we had together. Some of them stick out because of how hilarious they were.
We (our family) spent a lot of time fishing when I was little. I remember those days – usually because of how cold they were – especially out on the boat during the Fall. The thing I remember catching the most of was Mackerel. When we returned to the dock, Dad would clean them and then into the freezer they would go until the winter months. To this day – I hate Mackerel because there were usually a lot of bones, and you had to be careful when you ate them.
Life got a lot better when dad started buying his lobster traps – but that’s another story for later.
What I liked about fishing was just the time spent with each other talking, strategizing which lure to use, and then waiting for the bites to happen and the challenge of reeling them in. I would usually try to reel the fish in, but then I would usually get tired because I wasn’t strong enough to get the fish on deck – so I’d hand the fishing pole to him and say, “okay – your turn.”
Later in life – Dad kept two fishing poles in the back shed at their home in Florida. One day, we were walking down the street in their neighborhood that overlooked Sarasota Bay. We could see the fish jumping out of the water. Dad said, “there’s probably bigger fish underneath them that are chasing them.” “We should go get bait!” I said. “Probably shrimp would be best,” he said, “we’ll pick some up tomorrow.”
The next day we drove over to the bait and tackle shop on Anna Maria Island and bought two large boxes of shrimp. I was so psyched to be with him, walking with our fishing poles down to sit on the bench along the waterfront. It was just like old times. I thought about how many years had passed since we had stood on the back of the boat fishing.
We baited the hooks and then sat waiting. Every time I would feel a nibble, I would jerk the line and then – nuthin. When I reeled the line in, the bait would be gone, but no fish would be there. This happened again and again and again.
Dad and I continued to sit together, talking, and fishing. We’d talk, and then I’d feel another jerk on the line. I’d tug it again, reel it in again only to find the shrimp would be gone, and there would be no fish on the end of my line. “What the hell?” I would ask dad. Maybe it was the lures we were using. Perhaps the shrimp was on the hook the wrong way. I was exasperated.
But we continued to sit there for hours talking and completely emptying the two boxes of shrimp we had purchased. “I feel like I just took them out for a nice dinner,” I told him.
But as exasperated as I felt, the most important thing was having the time to sit with dad and talk to him and have a relaxing afternoon together. As we packed up the tackle box and the fishing poles, I felt sad that our afternoon had ended, but it was getting late, and mom would be cooking dinner by the time we arrived.
It was during our walk back to the house that dad happened to mention that the fish didn’t have any teeth. “What???” I asked him. “WHAT????”
He explained to me that the fish we were trying to catch had tiny teeth, and because of this, it was challenging to catch them. “So, we just fed them two boxes of shrimp?” I asked. “Yes, sometimes you can catch one, but not usually.”
As we got closer to home, I remember laughing and thinking that all this time, he knew this but didn’t say anything. And then I remembered the great time we had, spending the afternoon with each other.
After he died, I remember walking into the back shed – his shed – where all of his tools and tackle boxes were. I would look up at the two fishing poles, wishing I could take the one I always used with me. But then I would think about how old it was and the logistics of getting it onto the plane. I decided that I would fish another day but leave the poles in Florida, hoping that someone else would enjoy them as much as dad and I did.
Life is short. Spend time with the people you love the most. Even if the fish are just taking all of your bait, the most important thing is the time that you are spending together. – Lesson learned. Thanks Dad.
I took this photo sometime around 2010 ish. One of the benefits of working 12-hour shifts every Friday, Saturday and Sunday was that around 6:00am on a weekday, I could get up, grab my camera, drive into DC and get some photos of some of my favorite places without a lot of people around.
On this day, I was leaning against one of the stones on the back of the WWII memorial and looking through my viewfinder – totally in awe of the reflection of the Lincoln Memorial and the history of the Washington DC area. I now wonder about the legacy of our nation and I’m apoplectic about the fact that we can use DNA to cure cancer, wireless networks to communicate anywhere and we still can’t abolish racism and treat each other equally.
And in the words of Langston Hughes, “What happens to a dream deferred?“
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.
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.
Today I was at Walmart looking for one of those hook thingies to hang Christmas decorations on my door. I was distracted by this really beautiful Christmas tree – the ones that have snow on them. A man walks by me and says, “wow, they’re getting so expensive, aren’t they?” (it was a 7.5 ft. tree for about $160.00). He tells me “I don’t even get a tree anymore” and that he doesn’t really celebrate Christmas since his wife died of liver cancer about 15 years ago. “She fought hard,” he tells me.
We discuss how relationships are interesting like that – how you really see someone’s strength when they are faced with adversity. He smiles upon hearing this “yes, she was quite a fighter,” he says. “I’m sorry about your loss,” I tell him – thinking that even though it was long ago, he still misses her. He tells me that there will not be anyone else for him (not sure how we got to this but we did) – but he seems content and walks me through his thoughts about the rest of the trees and the Christmas lamp post that is next to them that he thinks will be stolen in a second if someone actually purchases it and puts it out on their lawn. “Maybe it’ll help the mailman see where he is going as it gets darker,” he says.
I loved speaking with him, not only because he was telling me about his life but also because he actually looked like an elf. He was a little guy – about 5’4″ ish with short wavy hair, jeans and a red and black checkered flannel
shirt, and one of those small little cute beards on his chin – the kind that you see on elves when you’re shopping at Walmart.
When he left, I kept looking at the tree. Like the last thing I need in my place is a 7 1/2 ft. Christmas tree (that honestly – I would seriously keep up until April because it looked really cool). But when I think about our conversation and what he first said when he walked by me, it was like mom and dad were speaking through him – like a tactful “what the hell are you thinking buying a tree like that?”. (It was a Teresa Caputo like moment)
And yes, I left without it – but it was definitely the high point of my day. When I left, I had the 8 items I was holding in my arms and went to check out at the register (one of the ones that are staffed because I hate the self check out thing). The lady in front of me said “Please go ahead of me – you only have a few things,” but I said, “No, you go ahead, I just need to stand here and think about the way my life is going.” (which made the lady behind me crack up and tell me all about her daughter and the 7 (!) Christmas trees she has in her home.
I love these conversations that take place during the holidays; they’re not kidding when they say, “it’s the most wonderful time of the year”.
On this the 18th anniversary of 9/11/01 I wish we could have a national (if not a global) debrief on where we all were and the lessons we learned. But because there is not enough room in my apartment to do this – I’ll just give you my short version.
On 9/11/01 at the point where the two planes flew into the World Trade Center, I was facilitating an orientation for the nurses and staff at Adventist Behavioral Health and teaching them about how to manage stressful situations in fast-paced healthcare environments. When I left the orientation and heard what had happened from the staff huddled around a computer, the rest of the day just felt numb and robotic.
It was a few weeks later that I came to understand the challenges we were facing.
A few weeks after 9/11, a member of the Adventist leadership team asked me to help a member of their church whose 8 y/o daughter didn’t want to go to school. She had seen several professionals already but no luck. I told her I didn’t think there was anything I would be able to do differently but she said, “look I know you like talking with children, can you just see?”
I agreed and met with her the next day.
The next day our little patient and her mom came into my office. Clearly – she didn’t want to talk to me as she buried her head into her mom’s sweater as soon as they sat down. I asked her mom about the different people they had seen, and her mom said, she wouldn’t talk and wouldn’t go to school. “I don’t think she trusts anyone” she said.
As soon as her mom said that, our young patient picked her head up and looked at me. I gently asked her “is that true? Is it hard to trust someone you don’t know?” I watched as she nodded her head up and down.
“That’s okay” I told her “I know trust is something you have to earn, right?” Again – she nodded her head up and down.
I told her it was important for us to know why she didn’t want to go to school. But that I also knew that I had not earned her trust. The only solution I had was to see if she would be willing to tell her mom why she didn’t want to go to school. When I asked her this, she agreed to whisper her reason for not going to school in mom’s ear.
I watched as she put her hand up against her mom’s ear, so I couldn’t hear her and then I saw her whispering something. Mom’s face turned pale and she started crying and gave her daughter a huge hug and said, “it’s okay honey, we’re going to all be okay”.
I asked if I could have a minute or two to meet with her mom and she agreed and one of my colleagues took our young patient across the hall to sit with her where they would still be able to see us. Mom looked at me and said “she told me she was afraid to go to school because if she left, she was afraid the terrorists would come to get her (mom). So together we developed a strategy which we hoped would help integrate her back into her classroom. Also during that time (and from working with the teachers in some of the school districts in the area and hearing their suggestions, one of the things they stressed was having kids being able to attach pictures of their families to their backpacks so that they felt they would have their family with them – at least in spirit.
But one of the most challenging and poignant conversations was with another one of the church organizations I had been consulting with when I asked the members present if there were any questions (related to the developmental issues and ideas for coping skills) I was speaking to them about. One woman raised her hand and when I called on her, she asked
“How do I cope with the fact that I can never know that my child will be safe when I send them to school?”
To this day, this question haunts me. And when I think about all of the chaos and turbulence that has and continues to take place in our country and the anger, fear and divisiveness that is present, I think that this is the issue that’s underneath all of it – the vulnerability and sadness in knowing that we are never able to know for sure that our children and families are safe. This idea haunts me – and I’m not even a parent. But the one thing I remain inspired and sometimes saddened by are the strangers who assist each other to get the help and support they need even (sometimes) at the cost of losing their own lives.
10 years ago today was the day of surgery. The Doc said “I think we’ve got it all.”
The “it” was the Melanoma that had showed up as a spot on the back of my leg. In a place I couldn’t see, in a spot I wouldn’t have thought to check. Because I wasn’t really paying attention anyway..to that spot..on the back of my leg.
The Melanoma spread fast. The doctor said “you need to get this checked out… Now.” When I told her I didn’t have insurance she said “we can see you here” (at the NIH – where I had volunteered as a “healthy” patient for a clinical trial but slowly learned I wasn’t as healthy as I thought.
A few days later, I was in the office of the chief Dermatologist at the NIH who agreed with the Doctor who had initially diagnosed my little spot. “You need to have this removed – Now!” – same exact words, but a lot more definitive and with a tone I will never forget. She informed me that she had colleagues who would be able to see me in their office which was closer to my home. “Tell them I referred you” she said. “they will be able to assist you and I’ll call them and tell them you’re coming.”
Both Doctors were extremely compassionate and helpful in assisting me with coordinating care. If you’ve ever been on the receiving end of a conversation that involves the term “malignant melanoma”, you know how great it is to have that critical blend of compassion, wisdom and a great navigational plan.
The picture above was where I was when I received the second phone call from my Doc informing me that they hadn’t got it all and needed to schedule surgery with a plastic surgeon because of where the spot was located. Sitting there at the end of the jetty in Old Harbor, Block Island (RI), I thought about the people who are most important in my life – my family and friends. My parents (who were with me) encouraged me to get back to CT via the high speed ferry and then home to MD to have the surgery. It was a no-brainer decision that was the right one. Financially however, not having insurance and having the diagnosis that I did and the surgery that I needed was costly. I lost a lot financially but gained my life and a fresh new perspective about that which is most important.
10 years ago today, I was really, really lucky that my itty bitty teeny tiny spot, located in a place I would never check, was found really, really early.
Need to know where to start with checking your skin? Start here
It wasn’t easy for me to leave New England to start a new job for a few reasons, but the one that was most bothersome for me was not being able to see the flowers at mom and dad’s grave site.
I’m not really sure what started this idea, but I think it was the fact that I wasn’t ready for mom to go when she died. And I know that the time of anyone’s death is not anything you can ever control; but mom’s death just took the wind out of my sails for a bit.
So after their burial service, when everyone had gone and my brother had flown out and I was on my way back home to New Hampshire, I stopped into the cemetery to say good bye and take one last look at the flowers we had left knowing they would be gone the next time I was there. As I stood looking at the tombstone I thought “nope, can’t do it”.
I felt like I needed to leave something a little more “in line” with our family so I got back in the car and drove down to Chaves where I found this little cat who has been “guarding”… okay maybe “watching over” mom and dad since their burial service.
In a way that I really can’t explain, there’s something reassuring about this teeny little kitten just hanging out with mom and dad that always makes me feel a little bit better and more reassured. This is especially true now that I am now in Maryland and can’t stop in to see the flowers or speak with them as much as I had when I lived in New Hampshire.
As mom had always loved planting flowers in the cemetery, we left a few bulbs thinking no one would really notice and when they came up, they would help shade the kitten that was watching over them. It was the perfect plan. And yes, I thought of leaving a Christmas tree with blinking lights but even I know that there needs to be a little dash of tact when dealing with the “things to leave at the cemetery” issue.
So this week, my brother went to meet with our accountant and stopped into the cemetery to check on things (as instructed by me, his neurotic sister, who wanted to make sure the cat was okay and the box of greens left at Christmas had been moved so the flowers could come up in time for Spring).
But today, he called me to say there was a huge sign posted at the entrance to the cemetery that said that on April 10th they were going to remove everything from the cemetery except for flags for veterans. This news made me a little apoplectic – not only because of our guardian kitten but because I still haven’t heard from the person responsible for making sure there is a flag in the cemetery for dad on veterans day and Memorial Day.
Anyhoo – Luckily my brother noticed the sign and called me with his report.
“Don’t worry, I’ve got the cat!!” he said.
It was funny in that he also realized the importance and significance of its presence at the cemetery. It’s like “if anyone in our family is anywhere, there must always be a cat”. “I’m taking it with me to Florida” he said “its not like it’s going to take up a lot of extra room in my luggage”.
“You should probably give it a little bath” I told him.
“Already did” he said. We both were reassured our little guardian kitten would stay with us instead of being absconded by someone removing everything from the cemetery.
Sometimes when I go to the cemetery I can almost hear mom: “you know we’re not here right?” – which I understand. But there’s something about having an access point that’s a little more tangible than a prayer or a quiet walk on a beach.
Maybe that was the point of it all – to get families out of the cemetery and talking to each other instead of standing in a cold, quiet New England church yard staring at a slate tombstone. Now if I want to see the cat I have to go to Florida to see Scott and Trey (his Maine Coon cat).
But there’s something about the transition of our “watch cat” that has disrupted my true north.
We’re touring around our over 55 living community in Florida in our golf cart looking at all the homes. It’s the beginning of summer and most of the winter residents have already left. The people who live in the neighborhood year ’round have been working on fixing up their homes.
There’s one street where several small bungalows have been renovated. As we drive up the street slowly to make sure we don’t miss a thing – a door that has just been painted or a decoration that has just been installed, I say to mom “I would buy one of these homes in a minute if I could afford it.”
“They are really nice” she responds, but then scoffs at a home which has just been painted a color which is somewhere between pea green and olive. “Ugh, that’s awful,” she says, “I would never live there”.
“Come on, it has a nice yard”, I tell her.
By then, we’re further up the street. She looks over at the wooden door of one of the larger bungalows that has a pool in the back. “Nice blue color”. I say.
“It’s delft,” she responds.
“Delft? What the hell is delft?” I’ve never heard of this color. As I drive the cart a little further, I quickly scan my mind looking for the place that has all of the colors in a Crayola 64 pack of crayons. I’m thinking midnight blue, navy blue, sky blue, blue-green, periwinkle and then off to the land of lime green, bubble gum and burnt sienna.
“There’s no such thing as delft”. I tell her. I am certain of this. Yet I’m also wondering how she would know this and more importantly, how she would remember. By the time of this tour around our neighborhood, my mom had been diagnosed with vascular dementia which had progressed rapidly. If you asked her what we had had for dinner the night before, she may have been able to remember but it would have taken her a while and she wasn’t a fan of being “quizzed”.
But the more I thought about it – back in time to several years before, I remembered that she loved designing the rooms in our home and had spent many times picking out paint, fabric, and wallpaper for not only our home but for the boat as well. Of course she knew about this color “delft” and I regretted that I had forgotten about her passion for decorating and designing.
“It’s a color that is prevalent in the Netherlands,” she tells me. “We saw it in a lot of places when we went there, and in Denmark and Sweden as well.”
I had forgotten that she and dad had traveled to Scandinavia; I think it was one of their anniversaries when she and dad had decided to go – just the two of them.
This was the blessing of being able to care for her for the three years before she died. We were able to reconnect with each other and laugh and have great conversations like this one; but at the same time, it occurred to me how sad it was that I hadn’t been able to spend the time with her and dad that I would have loved to. And I wished that we had had more time to reminisce about the extensive traveling she and dad had done instead of worrying more about upcoming appointments, medications and making sure she had the care she needed.
As we continued to drive up one street and down the next, she continued to point out everything she could spot that was delft. By now, we were both laughing but I remember her conviction as she pointed each door or set of shingles out to me upon saying “that’s delft and that’s delft… and so is that!”
Suddenly it seemed that the entire neighborhood had transcended to Delft.
Not only was it a colorful lesson for me, but I think the #Crayola people may have some serious catching up to do as well!