“When it’s really cold, the snow makes a lovely noise underfoot, and it’s like the air is full of stars.”
? Katherine May
The water is completely still under a brilliant sky, layers of light beneath a canopy of dark clouds. The moon shone brightly above us. Walking into the lake, I admire the tiny shards of shell glittering on the rocks below, each shard clear and defined in the calm water. As we swim, I can feel the cold reaching all the way to my center, reminding me to just be, to breathe deep. Walking away, I carry the lake within me, calm and shimmering.
I wrote this reflection after completing my second cold water swim in Cayuga lake with my co-worker Sara Worden, Assistant Director of Community Engagement. Cold water swimming has been shown to have numerous physical and mental health benefits and many people engage in the practice regularly.
I became interested in this practice after reading the book Wintering: The Power of Rest and Retreat During Difficult Times by Katherine May, which is the book featured in our upcoming community book discussion.
In the chapter “Cold Water Swimming”, Katherine talks about the mental health benefits and comradery of cold water swimming. Many people are using cold water swimming to help them cope with the many losses experienced during the pandemic. It’s a safe activity that can help swimmers feel connected to the healing powers of nature and other humans.
Book Discussion: March 4th with Laura Ward via Zoom. Register here.
Then, while talking with Sara, I discovered that she had had just booked American ice, open water and endurance swimmer, Jaimie Monahan, to speak at an upcoming event for the Women Swimmin’ community. After marveling at the coincidence of our shared interest and the intersection of our upcoming events, we decided to give cold water swimming a try for ourselves and committed to six swims over a two-week period.
It has been an exhilarating experience and one that has reminded me that I need to continue to stretch out of my comfort zone and look for new ways to stay healthy and care for myself as we approach the year mark of the pandemic and social distancing. To many, this might sound like a rather extreme example of self-care and I agree.
However, we invite you to join us in reflecting on what you might need to keep going during these challenging times. We hope that you will be inspired by Katherine May or Jaimie Monahan as you contemplate how to answer this question for yourself.
As we turn the final pages of 2020, our thoughts go to all who have struggled with loss. Whether you mourn the death of a beloved friend or family member – or simply the loss of normalcy — this has been a hard year for so many of us.
At Hospicare, we celebrate the nurses, aides, counselors, social workers, and staff who have tended to those whose end-of-life needs and grief did not take a pause for COVID. They donned masks and gloves and gowns, mastered new technologies and techniques to maintain human connections at a distance, and selflessly braved risks to themselves in order to help a person or family in need.
The good work undertaken by these extraordinary people could not have happened without donor support. Even in less challenging times, nearly one-fifth of Hospicare’s budget is supported with funds given by a generous community—not for frills, but as a means to provide the level of care, dignity, and comfort that has been the hallmark of our agency for over 36 years.
When you give, you inspire others to give as well, be those gifts of time, talent or treasure. Together, we are creating a community that we can be proud to call home.
To our donors, we say a special thank you. Thanks to our commitment to patient care and our rich community connections, we stretch every donated dollar as far as it can go. As Helen Keller once said, “Alone we can do so little; together we can do so much.”
On behalf of all the patients and families we serve, and on behalf of Hospicare’s staff who have not let the challenges of 2020 get in the way, we offer our thanks and gratitude. You make a difference, and our online report is how it shows.
Safe and happy holidays to you and yours, Joe Mareane Hospicare Interim Executive Director
Hospicare & Palliative Care Services has accepted the resignation of Kim De Rosa, Executive Director, effective September 23, 2020.
Although her tenure was brief and dominated by the enormous challenges of the COVID crisis, Kim accomplished much for which we are grateful and she will be missed.
“While executive changes are inevitable in every job sector, what will never waiver is Hospicare’s commitment to its patients and families,” said Hospicare Board of Directors president Betsy East. “The Board is confident in our exceptional senior leadership team and their ability to navigate this transition, as well as the dedicated and compassionate staff who provide extraordinary care to all who need it.”
A national search to fill the Executive Director position will commence this fall.
Hospicare & Palliative Care Services provides palliative care, hospice care and grief support to all residents of Cortland and Tompkins counties. Care is provided to patients in private homes, in nursing facilities, in hospitals, and at Hospicare’s 6-bed residence on Ithaca’s South Hill.
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.”
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!
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.
Join Sara Worden, assistant director of community engagement (and yoga teacher) for a breath break. Intentional breathing is great for our lungs, nervous system and immunity!
