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.
Lately I’ve been fascinated with pets during Covid. My little girl (Callie – pictured above) is no exception.
I’m not sure if it’s the neediness or the continued challenges with adjusting to me being home a lot more than I ever have been as a result of the Covid pandemic.
Early into the pandemic, I decided that it would be helpful for us to develop a routine (because I could sense that we weren’t adjusting well to this being inside all of the time). So the routine we developed is that every night before bedtime, we meet in the living room of our really small (really, really small) apartment where I pick her up and carry her through the different rooms in our place.
This is where the visual of this story that you’re getting does not take a lot of creativity on your part. The apartment is no larger than 750 square feet so there’s not a lot of room for grand tours.
But there is enough room to look at the pictures of Callie on the fridge and to talk about how beautiful she is as we wander across the living room, through the kitchen, into the bathroom, and the walk-in closet until reaching the bedroom where she settles in for the night. It’s a routine that has worked well for us during the pandemic.
But routines don’t just work for cats, they work for all of us. Having a routine helps reduce the anxiety of the stressful stuff unknown. They help transition chaos to calm; and my thinking is we could all use a little more calm… just sayin’.
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.
It’s the middle of the night and you can’t sleep. You toss and turn, your mind racing with thoughts of all the things you need to do tomorrow. Suddenly, you hear a loud noise coming from outside your window. It sounds like someone is trying to break in! You panic, your heart racing as you try to figure out what to do.
Fortunately, you’re taking How to Manage Unexpected Stress, an online course that provides you with the skills and strategies needed to manage stress that arises quickly. In this course, you learned how to stay calm and think clearly under pressure. You take a deep breath and remind yourself that everything will be okay.
You grab your phone and call the police. While you wait…
It’s 4:30; it’s been snowing for a few hours now. The quietude of the outdoors is afoot as the snowflakes are very small. I remember years ago when we used to ski at Killington, around this time we’d be in the lodge at the top of the mountain getting ready for the last run down. It was cool to sit there and have a hot chocolate while we waited for everyone else to clear out. Then we’d head out, put our skis back on and stand at the top of the trail for a bit taking in the beauty of it all, the snow in the pines, the crisp mountain air, wood stove smoke off in the distance, – Vermont in the winter. And then we’d ski down – new snow after a great day of skiing.
At the bottom of the trail, once our run was complete, we’d head to the car where there would be a small cooler with NY Sharp cheddar cheese, Triscuits, and sodas (Okay, insert favorite beverage here ; )) to enjoy on the ride home as we’d head through Woodstock and then back to 89 and Grantham. I miss those days. Killington is 7:45 and 470 miles from here, so I will stay here tucked in under warm blankets. All this to say – batten down the hatches kids, it’s headed towards the Northeast. And yes, my weather app is telling me Killington is expecting 12″ – 18″.
“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?
Acura is bringing back (FINALLY!) the Integra – yay!
True story: Many years ago I was on my way back from NY (in my Toyota Camry) and was sideswiped by a car while on 95 north of New Haven. The driver of the other car pulled over to wait for me but because I was trapped against a barrier in the left lane, and couldn’t cross traffic, they ended up leaving. Kate my cat was in her carrier next to me – but we were both pretty shaken up by what happened.
We ended up stopping at friends to check everything out before heading home. The car was severely damaged and I ended up needing a new one. Enter my Dad who was always fun to shop for cars with. – I couldn’t figure out what kind of car I wanted so we test drove everything (yes, including the cool black jeep with the tan leather side windows that zip). Dad said “this isn’t the most professional-looking car for you to drive”. I said, “I know but isn’t it fun???”. Needless to say, we narrowed my choice down to a VW Jetta and then went to test drive an Acura Integra. – back when Acura of Newport was still open. We decided to test drive a very pretty red one (the kind that when you drive a smidge too fast your chance of getting pulled over is greater because of the color).
So off we went for our test drive – down to the rotary, then towards the Newport navy base…Washington street, past the yacht club… down Thames st….and then, yes, around the Ocean Drive. As we were about as far out around Ocean Drive as you can go, Dad said “umm ya think maybe we should take the car back now?” (I think when we left the lot it had 6 miles on it). I told him “I love this car; I have to have this car!!” (luckily I had a great job which had discounted auto prices as part of the benefits – in healthcare – what???).
We drove the car back to the dealership and then I really looked at the red color and thought ‘probably not a good idea to get red – so ended up going with a darker blue color, fathom blue pearl with a beautiful camel interior.
As it was a standard, it was so much fun to drive – especially on the parkways in NY. The Jetta held the road just a little bit better than the #Acura did when turning corners. But the Integra came with everything standard: sunroof, electric everything and my personal favorite when being called into the ER to speak with a patient at 2:00am.. heated seats!
Since test driving that Acura #Integra years ago, I’ve purchased several of them: the Integra, RSX, TSX and RDX and most recently, my bellanova pearl #ILX (pictured below) with my Trek 2100 on the back somewhere along 95 in North Carolina.
Acura Is Also About Service
And yes, the other lesson I’ve learned from owning many Acuras is that the car that you drive is also about the service, quality and integrity of the dealerships you decide to visit.
I loved the service I received from Acura of Newport and was sad when they closed. After relocating to the Washington DC Metro area, I subsequently purchased all of my Acuras from Rosenthal Acura in Gaithersburg MD. Their service team was as excellent as was their sales team which was phenomenal as the dealership supports you from the time you enter the dealership throughout the time you own it.
Bringing back the Integra is long overdue. My hope is that Acura has designed the new Integra in a manner that supports the brand of a great company. I also hope there’s a hybrid / electric version.
If you’re considering an Acura in your future, you should click here to find the dealership closest to you.
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.
A few days ago I was watching Jeopardy with friends. It’s become a fun way to spend the evening as, whenever we yell out the answer to a question correctly, we all yell “YAY!” – loudly. It’s inspiring to be with them because of how intelligent they all are.
Once it was over, we all walked down the hall to our respective apartments. As we walked, we talked about cable streaming services. Our 2 90-something y/o friends mentioned how much has changed since they were younger. “Back then it was only 30 cents to go to a movie and that included the cartoons and the newsreels”, one said. “Popcorn was only a nickel!” said the other.
We all reflected on how much had changed since then and how expensive it was to go see a movie now. We also discussed our amazement at the fact that you could watch movie after movie from the comfort of your own living room.
Once I arrived back home, I picked up my new guitar – a Christmas gift to myself for enduring the covid19 pandemic safely and an inspiration to stay home a little while longer and learn how to play it. On the table in front of me was my iphone with the app I used to tune the guitar and learn to play. I just needed to turn on the (phone’s) microphone so the phone could hear the strings as I played.
And then I thought about the conversation I had just had with my 90+ y/o friends.
My phone, the size of a deck of cards, sat about a foot away from me on top of a 300 y/o antique sea chest made in Boston, could pick up the sound of each string of my guitar to let me know if it was in tune by flashing a green light on the app.
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.
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