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Seeking alternate paths

Today we left Valcarlos to walk to Roncesvalles. The path started along the shoulder of the main highway used by cars, trucks and motorcycles with very little room between us and the auto lane – and on a winding road with a lot of turns the blind spots were definitely not the safest place for pedestrians. Fortunately after a few meters there was a turn-off that took us back to the Camino through some really beautiful creeks and the River Chapitel that feeds wet forests of beech, oak and pine trees. As we climbed the final mountain pass called Puerto de Ibaneta reaching 1,057 meters (3,464 feet) above where we started, we were rewarded with a spectacular vista of where we’d been. The last 2 km to Roncesvalles was fortunately flat terrain! As we arrived in the courtyard of the Albergue where pilgrims are hosted, we waited to get our Pilgrim Passport stamped and I looked at my photos taken throughout the 4+ hour trek. It dawned on me that if the path you’re on doesn’t suit you, then seeking alternate paths can lead to beauty, serenity and inspiration to keep climbing!

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Walking through the rain

Friends who have walked El Camino shared with me that everything that happens to pilgrims while on the journey can be applied to life in general. I listened intently, but wasn’t sure I understood, until today. The plan was pretty simple: get to bed early, venture out early after a hearty breakfast and make it to our next stop in Valcarlos by lunch time so we can be indoors by the hottest time of the day. The weather forecast indicated clear skies until 5 p.m. Just as in life, the best laid plans don’t always work out. We had a sleepless night in an unairconditioned room, we got underway in the rain walking into foreboding skies ahead. And yet, with ponchos the rain rolled right off as we enjoyed the beautiful countryside of dairy farms and “backyard” vineyards. By noon we were walking into the historic town where Charlemagne the Great’s rear guard was defeated by the fierce resistance of the Basque people. And just like that the sun was out and we were sitting down to a delicious lunch and a cool apartment awaited us to recharge for the next day.

You never know what’s ahead, and yet with flexibility and a positive outlook you can emerge from the storm with your intention in place.

Departing St. Jean Pied de Port
www.orreagamonumentua.eus
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Promise made

In the summer of 2021 my husband, friend, partner in life and business was facing an uncertain diagnosis when a tumor was identified in a place not easily accessed for a biopsy. The process to achieve a diagnosis was long and required many steps to ultimately chart a course for possible treatment. As we were navigating those steps, I made a promise to God to make a pilgrimage to Santiago de Compostela in Spain if Tom was able to emerge healthy and well from this health uncertainty. Our prayers were answered and while the tumor was cancerous, the surgery in January of 2022 to remove it was successful and no further treatment was needed and other than check-ups every 6 months, we went back to life as usual.
In December of 2022 I began planning my pilgrimage, and Tom decided to join me. And that’s the background for this series of posts that will chart the highlights of our pilgrimage this month following El Camino Frances. After months of physical training and logistical planning we departed Miami on Thursday 9/7. We arrived in Biarritz France on Friday as a waypoint to St. Jean Pied de Port where the traditional Camino Frances begins in France. Taking the day to adjust to the 6 hour time difference we got to see the sights of this historic beach town considered to be the French Basque region. Today we took a taxi for a 1 hour drive inland to the historic, medieval town of St. Jean Pied de Port where we will begin our walk tomorrow morning across the Pyrenees to enter Spain.

Background: the Grande Plage, Biarritz

St. Jean Pied de Port
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Transitioning in Careers and in Life

My mom was diagnosed with Alzheimer’s in 2009. Throughout the following year, my focus remained on being present with her, while staying true to her aspirations. I researched facilities where her safety would be well-balanced with her ability to live independently as much as feasible during this next chapter of her life. By 2011, I had her comfortably set up in an assisted living facility in South Florida. While I was relieved to have her settled, my frustration that there were not better alternatives for families in similar situations was overwhelming. And so, I began a journey that would lead to one of the largest transitions in my career (and life). I initiated due diligence to acquire a facility where I could make a significant difference not only to the residents, but to their families as well. My mission was to create a new model for the industry—a solution that was not only affordable, but also provided the highest quality of care.

I acquired Indian Oaks in Largo, Florida (a suburb in Pinellas County) at the end of 2012. Over the next several years, through this labor of love, I learned much about balancing my mission with the challenges of running a profitable business, sustaining employees in a positive workplace, while exceeding regulatory compliance expectations. Throughout these years, I was spending a majority of my time at the facility, and barely seeing my own mom. As is often the case, this imbalance was the impetus for another transition. I decided to relocate my mom from her Broward County assisted living facility to Indian Oaks, where she would be cared for by my own team. Ultimately, this would become the final year of my mom’s life, and I am eternally grateful for the time with her, as we navigated her final chapter with love, care, respect, and dignity. 

She died the day after Hurricane Irma blew across the state of Florida, not only wreaking havoc in a hurricane’s typical flooding, stormy ways, but also spotlighting the vulnerability of our elder care system. When the extended loss of power at a nursing home in Hollywood (of all places the city where my mom and I had lived) had caused the death of 12 elders in their care, it clearly demonstrated the weaknesses present.

I was with my mom the two weeks leading up to that fateful day. I weathered the storm and the aftermath in the facility with her and our team. I believe she understood what was happening and was determined not to cross the threshold until the emergency was abated and I would be able to shift my focus from the 75 souls depending on me back to her. When I told her everything and everyone was ok, she began to let go and died quietly with me at her side.

Clarity Leads to Additional Transitions

It was difficult to return to Indian Oaks in the aftermath of her passing—not seeing her at mealtimes and walking past the empty room that was once her home was excruciating. This grieving led me slowly and carefully to a year of reflection, as many transitions do. I knew in my heart that I had made a difference for each and every one of our residents and their families. I also knew that the model that I had created was not scalable given the framework of the elder care system in Florida. As much good as my facility could provide, it would only ever be able to do so 52 residents and 25 employees at a time. Many more Floridians need high quality care, at an affordable price point, and in a workplace that honors the dignity of its residents and employees. Yet, our system needs solutions that can easily be scaled. Through these realizations, I began to understand that my original motivation to be a significant part of those solutions would remain unfulfilled if I remained on my current path.

In late January of 2019, I became aware of a group that was acquiring assisted living facilities throughout the state. With a renewed sense of clarity and purpose, I began to contemplate another transition. I performed extensive research to evaluate this group’s records of integrity and person-centered care and was pleased to find that their goal was to maintain a local management team to ensure that their core values would be honored. 

I began the detailed and lengthy due diligence process shortly thereafter. As March 2020 unfolded, I continued to communicate with the buyers about our response to COVID-19. We even collaborated on how we were each managing our communities in an effort to learn from one another. To their credit, their commitment to this process never wavered. I believed that this demonstrated their commitment to the mission that is the essence of this business—placing care of the residents above all else. Their vision was not hindered by the prospect of a global pandemic that was taking the lives of the very clients the business was dependent upon.

My last working visit to Indian Oaks was in June, when I informed my key managers and our residents and families of the upcoming transition. It was time to say my goodbyes. And as with most transitions, it was bittersweet. I was closing the door on a seven-year chapter where I began and ended each day with a prayer for my residents who became like family and at the threshold of a new chapter where it was yet to be revealed how I would redeploy my time and talent. The sale transaction closed on July 3, 2020.

In the Aftermath of Transitions

While the essence of a transition is change, which can be uncomfortable to most and agonizing to others, it also presents a unique opportunity to educate ourselves as we move on to the next phase of our lives. Some choose to shy away from these opportunities, others choose to seize them. I chose the latter. I reflected on the takeaways from my journey at that point and came away with a renewed calling to act on behalf of the many Floridians who are still navigating this journey.

What I have found is that while we all have experienced many transitions, our underlying missions remain steadfast because they are based on our core values. For me, I truly believe in our obligation to the common good and that a fundamental element of honoring that obligation is that we must care for those who cared for us. This is not only a covenant that we must have with each other, it is also an opportunity to be the beneficiaries of the intergenerational fuel that can inspire us to bridge the gaps of our troubled world. 

The gap that I continue to choose to bridge is transitioning our state to be a place where Floridians can thrive regardless of their zip code, color of their skin, birthplace, gender, or who they love. For our elders and disabled, this creates an opportunity to innovate for a system that is person-centered, rather than process driven. What does that mean? For those living on monthly social security income, they will not to be able to afford the daily costs of living, in addition to the increasing cost of medical care as they age. And this is not taking into account assisted living costs when they can no longer live independently with dignity and safety.

In order to survive, they will need to rely on processes to access resources that the state has set aside for those who qualify, including the process to access food benefits through SNAP, prescription drug programs through Medicaid, and a fixed stipend toward partial payment of assisted living or skilled nursing care. These processes are not streamlined for efficiency, much less for effectively getting the help needed proactively. They are underfunded and fundamentally fraught with pitfalls when those navigating are unaware and uninformed. Change is long overdue and needed holistically and on an individual level. I believe we can empower Floridians to make better choices in their daily living to support a healthy future, including navigating the health care system.

Professionally, my mission is to find ways to infuse this empowerment into my various non-profit commitments and affiliations. I will also continue to advocate for public policy and resource allocation that honors the dignity of elderly and disabled Floridians. I have been so impressed with the advocacy at the state and federal level of the Alzheimer’s Association that I’ve committed this year to various activities:

  • The Longest Day activity to increase awareness and raise funds for the Alzheimer’s Association
  • Advocacy activities with the Alzheimer’s Association during the annual “Rally to Tally” and “AIM days” with our congressional leaders in D.C.

Personally, every interaction I had ever had with one of our residents led to new wisdom, new perspective (sometimes with a strengthened “patience muscle”), and always, an acknowledgment and respect for the dignity inherent in each person. I had the privilege of knowing and caring for several centenarians. Additionally, I embraced each of my transitions as the learning experience for which it was intended. Collectively, these experiences have not only guided me in taking my mission to new levels professionally, but also inspired me to set my own personal goal—to live to celebrate my 100th birthday, healthy and fully cognitive, with my great-grandchildren.

Wherever you may be in your own life’s transitions, I encourage you to honor the elders in your life. Proactively think about their next steps, both logistically and in alignment with their vision. If they have made their final transition, carry the lessons learned with you, so that you may help others on their journeys. In these ways, it will be more than individual missions, like my own. Rather, it will be a movement that establishes Florida as a place where, with the support of their families and caregivers, elders not only live, but thrive.

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The Common Threads of Crisis Management – Finding Certainty in Uncertain Times

Key Takeaways from an Assisted Living Facility Owner

In the early days of the COVID-19 pandemic, we were shrouded in the darkness that utter uncertainty inevitably brings. As an assisted living facility operator during a global pandemic that affected residents in Florida facilities to the tune of 35% of all Florida deaths, more was unknown than known. And while state government offered little transparency in a way that would yield the sort of guidance needed to navigate the pitfalls of a public health crisis, I made the conscious decision to take action.

Being Proactive, Rather than Reactive

I had started following the COVID-19 news in January of 2020, when few had even heard of it, and with increasing urgency in February. We conducted refresher trainings with our staff during this time, and began stocking up on PPE supplies and tracking back-orders.

As I evaluated the risk profile explained by the CDC and the definition of community spread (even though our Governor would not publicly acknowledge that Florida was experiencing community spread), it was obvious we were living through it. I felt a responsibility to read the signs and take continued action, regardless of government inaction.  Before we were required, I began screening visitors and vendors for possible exposure.  In doing so I ensured open and honest communications with our residents and families, so they would understand that we were being proactive. “Better safe than sorry” became a motto used often during that time. Now, I look back with appreciation for the support of our families, who understood these efforts and adjusted quickly to the new means of communication. We proactively scheduled Facetime video calls with each of our families using our in-house I-Pad.

In March, we cross-trained staff to have the ability to act in various roles in the event we would encounter a shortage of staff due to sickness. We also updated our emergency plan for creating a self-contained wing, should we need to care for known COVID-19 infected residents who could not be discharged to a hospital due to lack of available beds. This included creating our own version of “negative pressure” rooms. We scheduled “shopping runs” for our residents to place their “personal shopping orders” with a designated staff member who was prepared to carefully minimize their exposure while conducting these shopping trips on their behalf.

As always, I remembered that knowledge is power. And as such, we maintained regular open and honest conversations with our staff, establishing trust and commitment. Each person committed to maintaining a “bubble-like” lifestyle to help shield us from exposure that would eventually bring the virus into the workplace. I also invested in hardship stipends so that each staff member would be able to “stock-up” at home with the supplies to keep themselves and their families safe.

By the first week in March, we had closed our doors to guests and all but essential vendors, before the State mandated such actions.

Facing Uncertainty with Stress Management, Information, and Communication

It became obvious to us by May that this emergency was unlike anything we had been accustomed to in the past in preparing for, and managing, emergencies caused by hurricanes (a fairly common occurrence in the state of Florida). Unlike past storms, this was not like a period of preparation, experiencing the storm, and responding to the aftermath within a period of a month or two. It was clear our periods of preparation, experience, and response to COVID-19 each had no real end in sight. We also saw with abundant clarity that we were not dealing with the geographical, relatively limited path of a hurricane, and that this worldwide global pandemic would require far more resources for recovery.

We understood that this uncertainty would lead to stress and fear not only among our residents, but also among our staff. As a consequence, in addition to cross training our staff, we began coaching them on various coping skills to manage stress more effectively. We routinely asked not only how they were doing, but also how their families were navigating the incredible amount of stress that was building in us all. We sought to help them balance those challenges in the face of our commitment to live in a “bubble” in the interests of protecting each other and our residents. 

Further, I continued to maintain a rigorous data and information evaluation schedule that entailed daily reviews of several primary information sources, such as the CDC and the Florida Department of Health, as well as disseminators, such as the Health Care Association and the Florida Assisted Living Association.  Often, this resulted in an exercise in “information overload” that left me completely exhausted, but ultimately, better informed than if I waited for other, largely unreliable, sources to provide information. I needed the ability to make adjustments to our operating protocols in a moment’s notice, and needed reliable, accurate information to do so.  I was also able to use this information in my ongoing communications with our residents and their families, so that they could make the most informed decisions, and trust the fact that we were doing the same.

The Common Threads of Crisis Management

As we tentatively approach the other side of this life-altering event, I can say with humility and fulfillment that I was able to lead through the uncertainty of that first surge with no infections and no deaths from COVID-19 in our staff or residents. With gratitude, I thought about the common threads in the actions we took: 

  • Leading with my heart, as if my mom was living in my ALF, through this and with my mind, by following facts-based guidance.
  • Detailed attention not only to the problem, but also to the management and resolution,
  • Reliable, accurate information gathering and dissemination by vetting sources,
  • Proper training and communications,
  • Early investment in resolutions (PPE, hardship stipends), and
  • Thorough coordination among all the key stakeholders.

When I examined these common threads, I realized that we did, and still do, have some certainty after all. These are no different from navigating any crisis, whether it has a foundation in health, finance, business, education, natural disaster, or career. It reminded me that we have the resilience not only to manage a crisis, but to educate ourselves through the process. This is one of the key takeaways I will choose to remember from an unforgettable time.

Until next time, stay safe and, please stay educated – lives depend on it!

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Partnering with Shared Values in the Face of Worldwide Pandemic Fears

We are living through daily unprecedented actions in an uncertain time. We hear updates from the federal government, state government, school districts, professional sports teams, and retailers on nearly an hourly basis. We feel the need to help and protect those most vulnerable. Our instincts tell us to get out there and do something; band together with our friends, our community, and take concerted action. However, this unique instance mandates the exact opposite–stay home, stay isolated, and wait. Our call to action is … inaction.

Currently, the underlying psychology of most individuals, no matter where they are in the world, is one of fear–fear of the unknown, fear of scarcity, and fear of the consequences of a lack of critical thinking ability. This is all exacerbated for the residents of assisted living facilities and for the families who love them. These families have one less freedom they had a week ago. They can no longer decide to visit a loved one whenever they please. In fact, they are being ordered not to do so. The choice was quickly, but necessarily, taken out of their hands, leaving them powerless to make the simple decision to visit their mom, dad, grandmother, aunt, uncle, or other loved one.

To help cope with what is happening in our lives and the world around us, we must better understand the fear that is pulsing through our veins. First, is the acknowledgment that we are feeling anxious because we are scared. Recognize that while fear is an emotion that exists to protect us, it creates uneasy feelings and corresponding physical responses. We should also try to identify the source and what is driving this emotion. Not knowing what is coming next for ourselves, our loved ones in an assisted living facility, our community, our economy, and our country is a terrifying place to be. And, we are there.

Additionally, if we haven’t seen empty store shelves firsthand, we have certainly seen the pictures on the news or social media. Shoppers aimlessly pushing empty carts through a myriad of bare-shelved aisles with dazed expressions on their faces. Is this our new reality? What if we need something and cannot find it for ourselves or our loved ones? Where do we go? What do we do?

When fear increases, critical thinking inevitably decreases. We operate in “fight or flight mode,” powered only by a rush of adrenaline, not by critical thought. Think, for a moment, about when you are facing one of your fears. We do not think logically; we think only about how to survive the situation. While this is essential to our well-being, it is not a place of rational, calm thought and decision-making ability. Rather, the body’s sympathetic nervous system is activated, with physical consequences, including rapid heartbeat and breathing, pale or flushed skin, and trembling, among others. To mitigate that response and return to the critical thinking process, we must practice mindfulness by acknowledging where we are, staying present, and focusing on the body and our breathing.

Nothing is more important in overcoming fear than education. Education means the attainment of knowledge. What it does not mean is inundating ourselves with any and all news media and social media sources. And, when it comes to educating ourselves, we should focus on quality, not quantity. To that end, trustworthy, primary sources of information are the only sources that should be relied upon. In the case of the COVID-19 worldwide pandemic, reliable sources include the Centers for Disease Control and Prevention (CDC), the Florida Department of Health, and the assisted living facility in which your loved one is a resident. Of course, we will all listen to news media, but remember this is a secondary source. Additionally, be cautious of the amount of time you devote to listening to the news, even if it is merely background noise. We cannot overexpose ourselves to constant news, stories, fears, and warnings. Doing so will only increase our anxiety. In fact, we should limit our news updates to once or twice a day.

To ease feelings stemming from a fear of scarcity, educate yourself by reviewing your business or family emergency plan and establish existing inventory. For businesses, before triggering emergency plan orders modeled upon hurricane preparedness and exacerbating supply chain flows, discuss with suppliers what they are seeing in the supply chain. For individuals, evaluate what is needed to have a potential fourteen-day self-isolation window. Literally sit down and count how many wipes, how many hand sanitizers, and how much food and other necessities are needed in the course of a day and extrapolate that by a minimum of fourteen.  Then, go to your pantry–it was amazing to me that I had a full week of meals already in my pantry and I did not need to go to the grocery store!

The best way to educate yourself with regard to your family member or friend in an assisted living facility is to communicate directly and regularly with your loved one and the facility, and listen to their direction. Your loved one is scared as well and needs to feel your reassurances and love. A lack of physical connection does not have to mean a lack of emotional connection. When you speak with the assisted living facility, understand that they are also fearful and doing the best they can with keeping you informed, while their primary concern must remain on keeping your loved one safe.  

Assisted living facilities are working around the clock to help ensure the safety and protection of their residents. Some of the steps we are taking at our assisted living residence include, but are not limited to:

  • Following the guidance provided by Governor DeSantis and the Florida Department of Health by restricting visitors for the safety of assisted living facility and nursing home residents.
  • Restricting vendor access, where only after risk assessment interviews are conducted are vendors providing vital services allowed access. 
  • Operating under our Outbreak Response Plans to: (a) reduce the likelihood of transmission among staff; (b) protect residents who are at higher risk for adverse health complications because of their underlying medical conditions; and (c) maintain business operations so the residents’ care is not negatively impacted.
  • Being vigilant and screening staff for signs or symptoms of a respiratory infection, such as a fever, cough, sore throat, or shortness of breath.  Anyone displaying these symptoms is not allowed to work and sick time is available/being advanced if not yet accrued.
  • Implementing online training programs to reinforce the infection control practices that the CDC recommends for the facility. 
  • Conducting ongoing screenings, risk assessments, and response planning until the COVID-19 outbreak is confirmed as contained.
  • Setting up a schedule of “face-time” and phone calls between family members and residents to ensure reasonable access.

I share these steps so that if you have a loved one in assisted living you can have a point of comparison about what reasonable steps you should expect to see and hear, to be able to advocate respectfully and in the spirit of partnership.  In a time of uncertainty, we are each navigating the situation as it evolves day-by-day, hour-by-hour and we can rise to the occasion when we come together as partners with shared values.

At Indian Oaks Assisted Living, our values are Compassion First, Proactive Thinking, and Aim to Be Efficient. These values have served us well as we work together to keep one another safe and healthy, while caring for our residents. What are your values for yourself and for those you love? Remember them as you cope with your fears during turbulent times, such as this, and stand strong on the foundation which they provide. We will get through this and learn more about ourselves and each other through the process.

Until next time, stay safe and educated.

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My Favorite Valentine

Today, Valentine’s Day, is two years and five months since my mother’s journey with Alzheimer’s reached its destination on September 14, 2017. A lot has happened over the past 897 days. I think it took me this long to complete the grieving process, if there is such a concept. I feel that way because I can now reflect on the nine years that I walked alongside her, on an often-heartbreaking journey. I see more clearly the way points, the forks-in-the-road, the lessons at each turn begging me to learn, and so many opportunities to share inspiration and practical guidance for the thousands of other daughters and families on a similar journey.

My hope is that by sharing these reflections, you or someone you know may walk your own journey a little lighter, with an open heart and open mind.

I began to notice the warning signs of my mother’s changing cognitive function by the time my daughter was in fourth grade (isn’t it funny how the milestones of your loved ones become your references points?). Unfortunately, I did not always immediately follow through after observing these signs. Not surprisingly, forgetfulness, something most people discover more and more with each passing year, was one of the first signs. Forgetting events, conversations, and recent tasks (i.e. short-term memory recall) suddenly became the norm, rather than the exception. I remember the day when there was no longer room for denial of what was happening. I had coordinated with my mom to pick my daughter up from school and she got lost on her way, ending up at a different elementary school in a full panic because the school denied any knowledge about a student with my daughter’s name. When I arrived at the school to meet my mother and help get her reoriented, she was an absolute wreck, thinking that the school had “lost” my daughter or worse that she had somehow “lost her.” That day was eye-opening for me.

In hindsight, there were many barriers to acknowledging, and accepting, what was happening to my mother, rather than making simple excuses for her behavior. I have also learned, through other families, some of the barriers they faced along their journey.

  • “Sandwich Generation” Effect. This effect has been described for those of us “sandwiched” between raising our children and caring for our aging parents, constantly juggling many competing demands. Time to “be present” is in short supply and it is the greatest barrier to families getting an early diagnosis and finding the resources and education to help keep their loved one safe. 
  • Nature of the Relationship. Valentine’s Day was always a favorite holiday for my mom. Each year, no matter how old I was, she would give me a sweet card or a little gift. I never doubted my mom’s love for me. She chose to give her whole life to me selflessly and unconditionally. I was the center of her universe and she would move mountains over the course of my life to ensure my health and well-being. While incredibly generous, the expectations that emerged set a very high bar for reciprocity that would play out over time and in acute ways in our relationship. The complicated nature of mother-daughter relationships sometimes causes wounds, and some heal better than others. I believe some of the healed, yet visible, scabs in my relationship with my mother delayed my acting on the signs that I was seeing because I was in a mode of “containment.” However, in setting those boundaries, I never foresaw that it would dull my awareness of exactly how her day-to-day routine was shifting because she was overcompensating for her deteriorating cognitive functions. I now know that the physiological changes she was undergoing may have benefited from early detection and treatment.  
  • Shifting Roles. My mom and I had always been “equal partners.” As a senior in high school, I entered the work-study program, so I could work full-time to help support our household, and this continued as I was worked my way through college. We always had a rhythm of working hard and supporting one another. Looking back, it was never a stated goal between us, but rather intuitively, we were always working toward getting our “heads above water.” As my career flourished and I was able to lighten her financial burdens, I assumed more of the household budget and expense responsibilities. She willingly accepted this help because she never really liked numbers and paperwork. Because this was our routine, I never saw the difficulty she was having in doing simple math or her ability to interpret information in writing.
  • Financial Hardship. While, at this stage, managing my mom’s financial needs was not overly burdensome, I have learned since, from working with other families, the stress of living paycheck-to-paycheck and multiple jobs can be a huge barrier to families recognizing the early signs. It is very difficult to be present when you’re just struggling to make ends meet.
  • Sibling Relationships. As an only child, I did not have any siblings with which to compare notes or share burdens. This sometimes can be the biggest barrier for families with multiple siblings, especially if any or all of them live far away from their loved one. I know it was hard enough for me to overcome barriers, overlay these same barriers times multiple siblings who have varying degrees of involvement with a parent (whether locally or from afar), and it can be the perfect storm for a cognitively impaired parent to “mask” their symptoms and “avoid” the conversations needed for proactive steps to be taken.

Inevitably, as I write this, I ask myself, if I could do it over again–What would I do differently? What would it have looked like had I followed through, as I was observing these signs? What can others learn from my experience? Below, is what I would urge you to consider:

  • Ask for help. Living in the “sandwich generation” is a barrier outside of your control. However, how you recognize the situation and compensate for it, is within your control. Looking back, I could have asked my husband, my sister-in-law, and other close relatives to understand what was happening and see if they could help assume more of my child-care responsibilities. I could have taken a step back from some of my outside of work commitments, so I would have had more time to be present with my mom to better understand what was happening, as opposed to squeezing her in between commitments and other appointments and rushing around to do it all. Now, I know about the Alzheimer’s Association and the existence of support groups in the community to share experiences and resources. There is even a “Brain Bus” that goes around the state of Florida providing mobile services at community centers and events. I know that the need is great, and resources are scarce, but there are outlets, if you stop juggling your daily tasks long enough to look for them.
  • Forgive and seek forgiveness.  We all have wounds, some are healed, some are not.  As I continue to work with families navigating how to help their loved one, it becomes more and more obvious that so much of the stress of making that transition is actually a reflection of old wounds. Hindsight has shown me that forgiving and asking for forgiveness is a first step that can open the other doors to trust. With trust, all is possible.
  • Be present. There was a long time when I did not take a half an hour just to stop by my mom’s house for a cup of tea and conversation. I did not just call out of the blue to have a conversation about something other than a task, a to-do-list, or something else that was a priority in that moment. Taking her grocery shopping would have been “one more thing on my to do list,” but really, it would have shown me a lot to just walk the aisles with her and observe what she was picking out for her meals, or what she was not picking out. Being present requires us to stop rushing to truly be in the moment with our loved one. It is not easy. It requires us to prioritize our loved one over all the other things on our calendar and in our lives. And, it will be the most important effort to truly understanding and building trust with your loved one, as you walk this journey together.
  • Dream together. Once I took the time to be present, I shifted the nature of my conversations from being task-oriented to being story-oriented. I would ask her countless questions: What did you dream of as a child? How did you envision your life? How do you want your family to remember you? What do you want me to do if you could no longer tell me what you wanted? What do you not want me to do if you could no longer communicate? What are you most happy about in your life now?  What are you most afraid of? I wanted to keep the conversations as casual as possible, so I gathered these answers over many weeks and months. Over the course of that time, I started to formulate my “elevator speech.” This was the three- to five-minute message that captured the highlights of her aspirations, while acknowledging her fears. I would use this speech at opportune times to reinforce that I was hearing her wishes and, along the way, I would insert steps that could be a reflection of how we could work together, as we always had, to realize her dreams and keep her safe and well.
  • Plan together. Ultimately, the decision to sell her home and move her to an assisted living facility was a mutual decision. Thankfully, there was no emergency hospitalization due to a fall or a doctor securing her fate to a facility. It was not easy, but over the course of a year, I forgave and asked for forgiveness. I was present and we dreamed and planned together. There would be many more challenges to come, but I know she had an infinitely better quality of life in the years following her official diagnosis.