Hospicare Welcomes New Board Members

Hospicare recently welcomed two new members to their Board of Directors, Alison R. Smith and Becky Hill. Hospicare’s staff is incredibly grateful to these committed community members who volunteer their time to advise our non-profit organization as we work continually to provide compassionate care to residents of Cortland and Tompkins counties.

Hospicare is delighted to welcome Alison R. Smith to its Board of Directors. Alison R. Smith’s term on the board began this summer.

Alison has worked at Cornell University for over 28 years, with a majority of that time devoted to alumni affairs and development at the Veterinary College.  Currently, she is the College’s Director of Development.

Prior to joining Cornell, she began her journey with higher education fundraising at Haverford College in Haverford, PA.  She is originally from Long Beach, CA, but remained on the East Coast after attending Davidson College in NC. She has been married for over 30 years to Elliott, and has two adult children, Duncan and Sarah. She has been a volunteer with the Cancer Resource Center and continues to be an active participant in Women Swimmin’ for Hospicare. She is an avid swimmer and loves to take walks with her Goldendoodle, Daisy.

“I have lived in Ithaca almost 30 years and feel so fortunate to have the wonderful services of Hospicare in my community,” Alison said. “I have participated in Women Swimmin’, and truly believe in Hospicare’s mission. In addition, while working in the non-profit sector my entire career, I have seen the effectiveness and importance of volunteers. The timing was right for me to give back to my community in this way.”

Hospicare also welcomes Becky Hill to its Board of Directors.

Becky Hill is an HR Director for eCornell at Cornell University, where she has been employed for the past 4 1/2 years.

Becky got her undergraduate degree at Syracuse University and will complete her Master’s in Human Resources Management in 2021 at Cornell. Becky is passionate about diversity and inclusion, process improvement, organizational effectiveness and climate, metrics and analytics; she has expertise in employee and labor relations and recruitment.

On a personal note, Becky loves living in the Finger Lakes and taking advantage of all the region has to offer: activities outdoors and on the water, and local wineries. 

“Hospicare has been a service that is held in high regard in my family. Having had grandparents who volunteered and worked for hospice, it was ingrained in me at a young age how essential it is to dignify and uphold the end of life experience. I am so grateful for all of those who contribute to this being as comfortable an experience as possible, both for those who are near the end of life and for their loved ones, who need so much support.” 

Welcome and thank you to Alison and Becky!

Why You Need a Health Care Proxy: A Social Worker’s Perspective on Advanced Directives

By Kira Lallas

Update 4.25.2020 An important Executive Order, 202.14, has been issued by Governor Cuomo that allows remote witnessing of health care proxies, among other documents, until May 7. This order will assist New Yorkers in completing advance directives to guide medical care in the face of the COVID-19 pandemic. Click to download.

As a social worker, I help patients and their families make sometimes difficult decisions about their choices at the end of life. One of the confusing aspects of talking about “Advanced Directives” is that that term refers to a few different documents — some of them are binding medical or legal documents, and others address a general philosophy of care, or emotional and spiritual, aspects of end of life care. 

Here is a brief explanation to compare some documents you might explore as you consider options for end-of-life care and want to make your wishes more formal and explicit.

One of the hardest parts about thinking into the future of what health care we’ll need and what choices we want to make, is that it often means guessing at an incredible range of abstract possibilities.  Even if we are living with chronic or life-threatening conditions, there can be so many complexities to the body and other circumstances, it is hard to think through every avenue. On top of that, feelings about our bodies and our ideas of what “quality of life” means may change over time.  I have so often heard people say they absolutely would not want to live with this or that condition, only to find (when the circumstance arrived) that they found the experience to be different or more manageable than they expected. Some may even feel a sense of gratitude for the changes it brought to their life, to their loved ones, or in themselves.  When making health care decisions, we may also consider the feelings of our loved ones. Common questions are:

  • Who will help me at certain points of need?  
  • How would my loved ones feel about my making a certain choice?  
  • What impact will my decisions  have on my loved one’s life and family?

While these questions are an inevitable part of our thinking, it is nearly impossible to  plan for unexpected directions.  

I knew someone with advanced ALS who was being cared for by his young adult daughter as the illness progressed.  The plan had been for her to provide care for a short time, and for him to go to an assisted living facility. He filled out a MOLST early on with limited treatment options.  As his needs over time increased, he decided that his primary goal was to stay home and his daughter agreed to continue caring for him, even though it meant she could no longer work outside the home.  While he had thought life wouldn’t be worth living if he could not take care of his own eating, drinking, toileting, and other daily needs, his issues with swallowing and talking came sooner than expected and he ended up electing to go against the choice he’d made on his MOLST and decided to get a feeding tube.  The medical procedure came with complications that brought him back to the hospital many times and there were moments he regretted getting the feeding tube. However, emotionally it was helpful for him to have the additional time with his family. He was grateful for and needed his daughter’s help, but was concerned about her financial future and their relationship.   He wondered if she would resent him, and what it would mean for her to see him this way: drooling and unable to feed himself. He worried about the emotional impact of asking his daughter to do all the feeding tube care, helping him go to the bathroom, dressing him every day, , repositioning his body throughout the day and night, and more. He was afraid she would be scared, ashamed, angry or abandon him.  

As their social worker, I was able to help them have challenging conversations. His daughter  shared with me, and then with him, how she wanted to make him proud of her, and show him how much she loved him and appreciated him, through caring for him.  She felt she had matured as a person through the experience, and realized how important it was for her to have her Dad see her grow into an adult before he died. The time they had together through this illness let her show him that.  She also found herself in new territory in her spiritual life, feeling a vague connection strengthened and made real for the first time. So while this gentleman and his daughter had both been worried about the other, the experience became one through which they connected more deeply and got to share on deep and emotional levels through his death that they were both so grateful for.   

This story beautifully illustrates how complex our emotional and physical stories are, how layered and nuanced decisions become, even when they seemed so clear at a previous time.  There are many stories to illustrate just how differently things go than we expect, to show how formal documents have helped give quality of life, just as much as to ignore it. So, while having some documents and considerations in place, these are fluid questions that need attention throughout our life and in an ongoing way with those we love and trust.

The practical part – what and how different forms are used in New York State:

  • Health Care Proxy – Legal document designating a person who will make health care decisions in the event you are unable to make them yourself.  You can designate a Health Care Proxy with two witnesses, and you do not need a doctor or lawyer to weigh in. The Health Care Proxy can be designated without that designee even knowing.  It is only heeded if the medical system encountered has a copy of it in front of them during a medical event (this is why they are so often put on the refrigerator of a home or carried with a person who thinks they are likely to need it).
  • Medical Orders for Life Sustaining Treatment (MOLST) – A Doctor’s Order stating your wishes for the end of life in the event you cannot make this decision yourself.  If you do not have a Health Care Proxy, this document guides medical decisions and can arrest the momentum of our medical system’s obligation to do absolutely everything to sustain life.  If you do have a Health Care Proxy, this document can guide their choices on your behalf. This is a “Doctor’s Order” and needs a physician or Nurse Practitioner’s signature as well as two witnesses to be a legal document.  This document has room for the physician or Nurse Practitioner to review and update at any time, or at least every 6 months. So this is a document that someone should go over with you in detail who can discuss your specific medical situation, likelihood of these events, and possible outcomes specific to you.is a document to complete when these questions are more imminent.  They ask about intubation, artificial hydration and nutrition, antibiotics, and also a general question about philosophy of care. It is only heeded if the medical system encountered has a copy of it in front of them during a medical event (this is why they are so often put on the refrigerator of a home or carried with a person who thinks they are likely to need it).
  • Do Not Resuscitate Order (DNR) – A legal document that was subsumed into the MOLST form when NYS adopted this more comprehensive form. A DNR can be a stand alone order as well. The DNR in either form comes into play when a person’s heart has stopped beating and they are not breathing (ie the body has died), and the person wishes to let the body die rather than have CPR or other life sustaining measures carried out.
  • Living Will – A document you can give your Health Care Proxy that describes some of your wishes for the end of life.  This can be a helpful tool to reflect on your wishes, but is not binding in itself. A lawyer can draw up a document which narrates your choices to areas of care that commonly arise, and then can be used by your Health Care Proxy to help them make decisions on your behalf.  It would only be used by a medical professional and change the course of treatment if you were unable to make decisions on your own, a Health Care Proxy or default was unavailable to make choices, and the document was in the hands of medical professionals considering your care.
  • 5 Wishes – An easy-to-use document written in everyday language that helps you reflect on your spiritual and emotional values when you imagine the end of life. 
  • Power of Attorney – A legal document that gives a person the power to use your money with your authority.  If finances are complicated or there are exceptions to a person’s use of your money, this is often drawn up by a lawyer.  There are simple forms that just need a notary to sign off on in the presence of the person giving the Power of Attorney and the person(s) they are giving it to. This Power is only active until the person who gave the power is deceased.
  • Executor of a Last Will and Testament – The person designated in a Will drawn up by a lawyer to handle financial affairs after a person has died.

If there is only one point you take away from this brief guide, please let it be this: The most important decision you can make is that of picking a Health Care Proxy.  

Because it is difficult to know all the circumstances that will arise before the end of life and the choices that will need to be made, it is important to have someone who you trust and who knows your core values so that they can apply that knowledge to any specific situation that comes up.  You will continue to make your own decisions unless you are unconscious or deemed by medical professionals to be incompetent to make decisions.  

Your Health Care Proxy will only make decisions when you no longer can. In this situation, that means you will not be able to talk over options so it is very important that they know you deeply and that they will respect your values and wishes over their own.  

In New York State, if you cannot make your own decisions, and you do not have a Health Care Proxy, there is a determined order of who they will look to for decisions to be made (essentially a default Health Care Proxy).  The order is: Spouse, Adult Child, Parent, Adult Sibling, Friend. If you do not have a Health Care Proxy, and a medical decision needs to be made, know that someone close to you will end up in that position anyway . Also, no matter what choices you have written on paper, your Health Care Proxy can override any decision and can make choices without regard to any other family member, friend, or medical provider’s opinion. This reality means that a deep, thoughtful conversation with your proxy is especially important.

Again, it can be a good idea to use a document like “5 Wishes” or another Living Will template to help you think about medical, emotional and spiritual questions.  These resources can help you reflect on issues, and guide conversations with your Health Care Proxy and medical professionals who are helping you, so that they know what’s most important to you.  These documents are a guide for your reflection and do not determine your care. (And remember: if you cannot make decisions on your own behalf, a Health Care Proxy or designee will be appointed by the State.) 

The Health Care Proxy can be designated and living will/5 Wishes considered at any time of life, and they should be re-visited over time.  A MOLST form, on the other hand, is important to have filled out when the health care choices described are likely to be made within the next 6-12 months of life.

Hopefully these brief descriptions help you know more about the different forms available, when and how you would use them.  Remember that some of these seemingly practical choices and forms can bring up intense emotions; it might be helpful to have a loved one or trusted person in your life with you as you think about these things or fill out a form.  At Hospicare, our staff works with families to complete the forms they need, and to make sure all wishes of a patient are expressed and respected.  

Please email info@hospicare.org or call 607-272-0212 to talk with someone more about Advanced Directives. We are committed to helping our community work through these important topics, and speak to both individuals and groups. Keep in touch, and let us know how we can help! 

Wellness in the time of COVID-19

BY LAURA WARD

Though you might feel somewhat powerless or limited in what you can do, there are ways you can offer support and take control of emotions. Below is a list of suggested activities that might help you during this difficult time (modified from handout created by Mount Holyoke University Counseling Service).  

Seek support: Continue telehealth visits with your current mental health provider (The Governor of NY has announced that all co-pays for telehealth are being waived!), reach out by phone or FaceTime to friends or family members. You can also reach out to us at (607) 272-0212.

Maintain a healthy routine: Stress can disrupt our daily routine, in turn causing more stress. It is important to maintain your regular schedule for sleep, eating, having fun, socializing (phone calls or FT), studying, and working etc. Creating a new routine will be necessary in the time of social distancing, but routines are helpful. If this is difficult to achieve by yourself, work with a friend – you can encourage each other in self-care. Click here for a list of some free sleep meditation apps https://positiveroutines.com/free-sleep-apps/ 

Exercise: Physical activity can boost your immune system, help you feel good about yourself, increase your energy levels, alleviate stress, and help with sleep. With gyms closed, take a walk, run or hike outside. Try online workouts. There are lots of free workouts online. My favorite for free yoga workouts on YouTube is “Yoga with Adriene”. Utilize apps like “Map Your Run” to share your workouts with friends, set goals together, etc. Here is a list of some recommended work out and fitness apps https://www.self.com/story/best-new-workout-apps 

Meditate: Find some time every day to do a bit of meditation. It helps you feel grounded and present. Try https://insighttimer.com/, the #1 free app for stress, anxiety and sleep.  

Be informed: Uncertainty or misinformation can increase worry and cause panic. You can stay informed through official, fact-checked channels (e.g. World Health Organization website).  

Pay attention to some positive news: Despite this difficult time, there is often some positive information in daily news. Decide whether the degree of your worry is consistent with reliable information (e.g.: incidence rate, death rate, current advancement of medicine etc.) I have been uplifted through reading stories about the way that people are helping each other during this crisis.  

But limit the information: Sometimes, too much information leads to overload and more stress. So please try to limit your exposure (such as <1 hour/day), and make sure your information sources are reliable. Avoid reading information on the topic before going to bed – this can make it more difficult to fall asleep.  

Think positively: Recall how you and your loved ones survived past hardships and crisis. Remind yourself that things are temporary and the current situation will pass. Please remember that no matter what happens in the future, you and your loved ones are striving to live day-by-day in the present. Change your perspective – consider the current time as an opportunity to show more care to yourself and your loved ones.  

Share your thoughts/feelings with others (in moderation): Talking about your thoughts and feelings can help alleviate stress. Others might share similar feelings and help you feel less alone.

 ● Check in with your loved ones (in moderation): If you are worried about your loved ones, please reach out to them when you feel comfortable and lend a listening ear. Loved ones are often concerned about us and we may think they are trying to protect us by not being fully truthful; try not to jump to conclusions about their health and well-being, and please understand that we cannot always control others’ behaviors or change their beliefs. It can be helpful to have a few friends that you check in with regularly, even a simple “How are you doing today” text can help us all feel more connected. I enjoy using the free app Marco Polo to send videos back and forth to loved ones.  

Learn to say “no”: Although sharing can be helpful, sometimes it is also important to say “no” when you are not comfortable with sharing or engaging in conversations on the topic. Just make sure you set your boundaries respectfully or leave conversations in an appropriate way.  

Engage in conversations and activities unrelated to the outbreak and allow yourself to have some fun: There is still life outside of the current crisis. Reading news and engaging in activities unrelated to the current outbreak is okay – it doesn’t mean that you don’t care or aren’t concerned. Get a puzzle going, read a book out loud with family, break out the board games. Be creative, for example plan a FaceTime movie night with with your kids and their friends, all watching the same movie and eating popcorn at their respective houses.  

Do some relaxation: Make sure to plan some relaxation or activities you enjoy into your daily schedule, such as deep breathing, spending time with friends (virtually), coloring, listening to music, taking a shower, taking a walk, etc.  

Let it out: Sometimes expressing your emotions can be helpful – try journaling or keeping a voice diary, or let yourself be upset for a while. Here is a meditation for lovingly exploring your emotions. https://insighttimer.com/iamrachelricketts/guided-meditations/lovingly-exploring-our-emotions?utm_source=crm&utm_medium=email&utm_campaign=Black%20History%20Month%20-%20Week%203%20newsletter&utm_content=Variant%201&_branch_match_id=759402562456716377

Grief and Wellness in Uncertain Times: Facebook Live Series

Grief and Wellness in Uncertain Times – Online Support for Hospicare Community

Our team will share resources and guided wellness practices for our extended Hospicare family. All programs will be recorded live on Facebook and will be available after on our Facebook page, blog (hospicare.org/blog) and our Instagram page (@hospicareNY).

***Grief in Uncertain Times***
Monday March 23, 2020 12:00-12:15pm
Join Laura Ward, Bereavement Counselor, to learn about Grief and how it might be showing up for you right now. She will also share heartfelt ways that you can incorporate wellness habits into your daily routine.

***Wellness in Uncertain Times***
Join us for our bi-weekly 15 minute wellness sessions (Tuesdays and Thursdays at 10am). Presentations are by our interdisciplinary Hospicare team. Series will continue until we are able to host our support groups again (currently on hold till 4/15)

Tues March 24, 10am – Guided Meditation with Laura Ward
Thurs March 26, 10am – Breathing for Relaxation with Sara Worden
Tues March 31, 10am – Therapeutic Harp with Jayne Demakos
Thurs April 2, 10am – Tools for Senior Isolation with Jen Gabriel
Tues April 7, 10am – Spiritual Guidance with Edie Reagan
Thurs April 9, 10am – Gentle Stretching with Sara Worden
Tues April 14, 10am – Therapeutic Harp with Jayne Demakos

All programs will be recorded live on Facebook and will be available after on our Facebook page, blog (hospicare.org/blog) and our Instagram page (@hospicareNY).

Series is free but donations are appreciated. https://www.hospicare.org/donate/

Questions? Please contact Sara Worden, Assistant Director of Community Engagement at sworden@hospicare.org

Cortland Hospice Foundation Welcomes New Board Members

The Hospice Foundation of Cortland County (HFCC), a nonprofit foundation that supports Hospicare, welcomed two new board members in 2020: Nancy Wainwright and Evelyn Sammons.

A resident of the Cortland area for more than five decades, Evelyn Sammons is a past board member for HFCC and for Hospicare. Now retired after a 30-year career with the Homer School District, Evelyn enjoys reading, hiking and biking. She is a strong advocate for hospice, believing that all patients and families in the Cortland area can benefit from the full range of services available to them, including grief counseling.

Nancy Wainwright, a resident of Cortland County for 70 years, served as secretary for the Marathon Elementary School for over two decades. Nancy enjoys traveling, reading and spending time with family. She views her volunteering as a way to “pay forward” her gratitude for the hospice services her family members have received in the past.  Nancy is also a strong advocate for fundraising, understanding that philanthropy helps patients receive exceptional care.

Hospicare thanks the entire HFCC board for the ways in which they support Hospicare’s mission!

Hospicare is a Lifeline

By Mark Stevens

Ann and I met in 1987 when we were Graduate students in the Yale school of Drama.  Ann was in her first year of the 3-year program and I was in my second.  Because of the intensity of the program it is not hard to imagine that our paths would cross almost immediately.  I’m not sure what it was that attracted us to each other.  Our common ground and sense of humor I’m sure was a major part of it, but we became fast friends.  And  even in the most stressful of times we could find laughter in the situation or in the myriad of problems we encountered along the way.

There was one time that we worked together on the same production of Shakespeare’s “The Tempest”.  Ann was in charge of a particular set piece that can best be described as a windmill consisting of three steel pipes that extended below a raked show deck and attached to the floor  Ann and I spent about two hours alone under the deck drilling holes and attaching the legs to the floor.  Two hours that consisted of work, yelling, laughing and enjoying each other’s company.  Two hours that helped developed a bond that would last for the two decades.

After I graduated in 1989, I moved to Los Angeles, California to work as the Technical Director at the University of Southern California (USC).  Because of a change in positions after the first year, I moved up in the ranks and was able to hire a someone to work beside me to teach and design the technical aspects of the many productions.  Ann was an accomplished academic, with and undergraduate degree in theatre and history, and after 3 years decided to return to school to pursue her PHD in the History of Science and was accepted in the program at Princeton University.   Ann and I resigned our positions with USC and moved to New Jersey to begin the next act of our lives.  Over the next few years and in no particular order we got married, taught at two different Universities and finally moved to Columbia, South Carolina and to work at the University of South Carolina.  Over the next 11 years Ann worked as an Associate Professor in the History Dept and I worked for the Dean of the Honors College and then for the Dean of Arts and Sciences.

During those 11 years Ann’s scholarship, reputation, hard work and dedication led her to being offered her dream job as an Associate Professor in the Science and Technology Studies at Cornell.  While Ann was a respected researcher and writer, teaching students was her passion. At Cornell, she finally had the chance to focus on both with a support by the University and her fellow professors that she never found anywhere else.  I’d never seen her as happy professionally, and both faculty and students adored her, lining up to try to get into one of her classes.

When we lived in Columbia Ann had suffered from fibroids in her ovarian track, but surgery had taken care of them and regular scans had eased our minds that they would be caught quickly if they returned. Ann’s health was something we would watch, but we never obsessed. For the next few years before the offer to move to Ithaca Ann went for checkups twice a year and always got an “all clear”.   

July 2016 was our second summer in Ithaca.  I’m not sure what day it was now but Ann woke me one morning complaining about pain and asking me to take her to Emergency Room. If you knew Ann, and she said she was in pain, you knew this wasn’t something minor.  So, we got up got dressed and headed across the lake to the hospital.  We didn’t realize it then, but that morning began our longest journey together.

The trip to the emergency became a long day of scans and tests and the discovery that the fibroids were back, Ann was quickly scheduled for surgery at the center in Buffalo.  After the surgery, the surgeon pulled me into a private area and told me he’d successfully removed the fibroids but couldn’t remove a large mass that was involving a larger area. 

Ann and I had been married for 21 years and were best friends for even longer. We had experienced so many adventures together, both good and bad.  But this was a situation that you can’t really relate to unless you go thru it.

The type of cancer Ann had was known as – endometrial stromal sarcoma — a rare form, affecting a small number of women worldwide.   Ann had a lot of grit and was determined not to allow this disease to keep her from her commitment to her role at the university as a teacher and scholar.  So, while she continued to fulfill her duties in the office and in the classroom, she began on a daily regimen of oral chemotherapy.  Every day for the next 3 months, I drove her to campus so she could teach, and then pick her up and drove her back home an hour later.   Most often she would retire to the bedroom with her laptop and do work until she fell asleep

The drugs took a terrible toll on her and after a month and a half it was obvious the drugs weren’t working, and a car trip to a world-renowned cancer hospital NYC yielded no new possibilities for treatment.  A car trip that was extremely uncomfortable not to mention nauseating when we went thru the Lincoln tunnel.

Ann’s condition began to deteriorate at the beginning of December and when we went for a weekly appointment, Ann’s oncologist ordered a blood transfusion.  This was the second type of transfusion she went thru we were not that unduly alarmed at this happening again, but then when you are in the situation and going through this type of thing what is normal?   It was decided that she would be there overnight so since there was nothing I could do I went home to take care of the dogs and came back first thing the next day That morning as  Ann and I sat talking in her room, one of her doctors arrived to talk to us. “There’s not much else we can do,” And that she was going to go home.

Ann and I looked at each other.  And we had a long talk with the doctor. He was there for a long time making sure we both understood the whys and wherefores.  Much of it wet in one ear and out the other.  And suddenly we were alone in the room.  I remember I stood up and was staring out the window for a long time and we said nothing.  Then a memory came to me and I turned back to her as she laid in the bed is said. “you remember when we were under the deck putting in that stupid windmill or whatever it was”?  And she nodded.  “I thought of that the other day.  Not sure why.  But I remember how cool it was under the show deck.  I remember how quiet it was in the theatre except for us laughing.  Isn’t that funny?  I remember it, like it was yesterday.  And I after a while I turned back to her and said, “I wish it was yesterday”.

That was December 5. Six days later, Ann would be gone.

I had barely heard of Hospicare. You never think about something like hospice until you need it. Our doctor suggested Hospicare in Ithaca made some calls, and it was explained that Hospicare’s Residence was full.  Another option would be to bring Ann home, but that worried us. Our 16-year-old son Evan was in the throes of exams at school, and we worried about the long-term effect it would have on him, as well as other members of our family who began to arrive. But we learned that we could have the full hospice services delivered right to Ann’s hospital bed.

At the time, I felt I was standing at the edge of a cliff, leaning over a dark abyss, lost and unsure of what to do. Then someone grabbed my belt and held me steady. I turned around to see who it was, and there was Hospicare. Every nurse, aide, and volunteer we met felt like an angel.

The whole experience is set up to help make a difficult transition a little easier. It’s not easy at all, of course. It’s terrible. Hospicare was established for that purpose. The purpose of helping with care of your loved one but also in helping the immediate family members like us with the process of transition. A help that was tirelessly and patiently explained in every detail and with all manners of help along the way. 

Ann passed away on Dec 11, 2016 and it was devastating to Evan and myself.  After Ann’s death, Evan and I found it difficult to talk to each other. In fact, there were times we didn’t talk at all. I had no way to understand what was happening in his soul, and he had no way to understand what was happening in mine. We didn’t yet know that it was okay to be sad. Or angry. Or hurt. Or furious. Or lost.  Evan gave up playing sports, which was a passion he’d held since childhood. I spent every day feeling like I was walking around in a dense fog.  Wanting to find the right words to say but not knowing how to form the words

We felt very alone. After a while, people didn’t know what to say when they saw us. Evan said it best: “People want you to feel better because they want to feel better. They don’t want to deal with it anymore, and just want you to be okay.”  But we were not OK. We were stuck dealing with it all the time, 24 hours a day. 

But a lifeline was there.  We started meeting with Laura, one of Hospicare’s bereavement counselors. One of the very first things Laura said to us was that it’s okay to feel awful. Those emotions are the things that make us human.

From there, and in a beautifully subtle and compassionate way, Laura began giving us little tips to help us relate to one another. She brought positivity and light back into a world that felt so hopeless.  Eventually, Evan and I saw that we could find a way out of the darkness and together we could find our paths toward healing.  Similarly, I began to attend some of Hospicare’s group sessions.  In those conversations, I listened to other people’s struggles.  came to understand the depths of hurt.  And it may seem strange, but those groups sessions help you to see and feel that you are not alone.  You are not alone in a raft in the middle of a sea.

Every time I interacted with Hospicare it was like finding a little building block.  Over time all those little building blocks construct a new normal. Both of us began to climb out of the darkness and see the sun.  Evan returned to sports the next year.  He became a captain of the high school swimming team and traveled to the state championships in his last two years of high school.  And he was on the varsity Lacrosse team for 3 years.  Because of everything he experienced thru Hospicare, and how it took care of his mom in those last days, he dedicated himself to working in healthcare and is now studying to become a nurse at Utica College

Does all of this mean I’m done grieving Ann?  No. I think about her every day. There are still times when I would wonder and wish why she would walk in the room to share something with me. There are a thousand little things that remind me of her constantly. You never get over this kind of loss; you just make friends with the ghosts and be happy with the memories.

More people need to understand what Hospicare is doing in the community. It’s an incredible organization that provides a safety net for people like me. It’s part of what makes this area such a good place to call home. That’s why I tell my story here.  Evan and I have volunteered for the past two years now during “Women Swimming for Hospicare”, and we feel good about giving back to the organization that gave so much to us.

Even though you may not have known it, the support you give to Hospicare meant you were supporting myself and Evan and the many families during the most difficult time of our lives. Thank you.

Ann was recently honored at the University of South Carolina.