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

What the Dying Need from Us

by Dr. Pat Hayes

It’s not easy to know how to relate to someone who is dying. Do we express our own sadness at the situation? Do we pretend nothing is wrong? Is it appropriate to tell jokes and act silly like we used to do with our loved one? Should we visit more often to show our support or visit less often so as not to tire them out? And what about our own fear and discomfort? Do we give in to those feelings and keep our distance?

These are questions everyone struggles with. I recently saw a helpful article by the American Hospice Foundation that offered suggestions about how to support someone at the end of life. Their list was based on what the dying themselves had requested.

Here are the requests of dying people that struck me especially strongly:

  • Be honest with me. I can tell when your feelings or actions are insincere.
  • Laugh with me; cry with me. Allow me to express intense emotions.
  • Don’t feel sorry for me. Your understanding helps preserve my dignity and pride.
  • Touch me. I want to be accepted despite the way I may look. Inside, I’m still the same person you always knew.
  • Let me talk about my illness if I want to. Talking helps me work through my feelings.
  • Let me be silent if I want to. Sometimes I don’t have much energy and I just may want your silent companionship. Your presence alone can be comforting.
  • Space your visits and calls. Consistent support is very helpful.
  • Offer to help me with simple chores. Routine jobs are often difficult to accomplish.
  • Continue to be my friend. Don’t let my illness overshadow all the good times we’ve shared together. I know this is hard for you too.

I noticed in all these requests that the emphasis is on companionship and understanding. In my own experience with the dying I have seen that it is very important to them to have loved ones to interact with. When you’re supporting a dying loved one, you don’t have to have deep conversations to show your love. Those kinds of conversations are great if they happen, but if they don’t, it’s OK, too. The dying just want to be included in the everyday world of the living and not isolated.

When my own mother was dying, my siblings and I spent much time with her. We would take turns sitting by her bedside, and we would talk amongst ourselves about everyday things. She would listen and join in occasionally. Sometimes she would doze and then wake up to our conversation again. There was an inclusiveness to my mother’s last days, a continuing of the life we had always shared with her. It is a memory I cherish.

Pat Hayes, MD, is a retired physician from Cortland County. He serves on the board of directors for the Hospice Foundation of Cortland County and was the board president in 2015. He currently writes a monthly column with Jackie Swift on hospice for the Cortland Standard. This article first appeared in the September 2, 2017, issue of the Cortland Standard.

Most of Us Want to Die at Home

by Dr. Pat Hayes

Home is where my heart is. When I’m home, I’m comfortable. I get satisfaction out of sitting in my favorite chair, looking out the window at my backyard, even eating off the plates my wife picked out. I imagine if I were dealing with a terminal illness, little things like that would matter even more. Recent polls show that approximately 80 percent of Americans want to die at home, and I imagine their reasons are similar to mine.

But the statistics show that most Americans don’t actually die at home. In fact, only 20 percent have the privilege of taking their last breath in the comfort and familiarity of their home. There’s a big difference between what we want and what actually happens.

As a doctor, I saw patients and families wrestle with this dilemma. Often the patient ended up in the hospital, sometimes multiple times in the course of the illness, and the family and medical staff did all they could to keep the patient alive even past the point where curative treatments were an option. That frequently meant longer hospital stays and more extreme measures that made it difficult or impossible for the patient to return to their own home.

It doesn’t have to be this way. If you want to die at home, begin telling your loved ones about this desire as early as possible—even before you have a life-threatening medical condition. The more you talk about your wishes, the more your loved ones will understand the importance you place on it. And there’s something else you can do—something that can have the greatest influence on whether you die at home or not. If you or your loved one should have a life-threatening illness, consider calling in hospice as soon as you are able. (Remember, Medicare and most insurance policies will pay for hospice once a physician has determined the patient has six months or less to live.) In Tompkins and Cortland Counties that means calling Hospicare.

Like all hospices, Hospicare uses a team approach. Along with a doctor whose specialty is end-of-life care, they provide specially trained nurses, home health aides, spiritual care experts, bereavement counselors and other healthcare experts. All of these highly trained professionals are focused on keeping the patient comfortable and helping their family members cope with this highly stressful situation. They not only know how to care for people in their own homes, they are dedicated to helping patients die there if that’s what the patient wants.

They are also experts at pain and symptom control. I’ve seen patients’ comfort improve considerably once they’re receiving hospice services. I’ve also seen their family members breathe sighs of relief as hospice team members ease the burden of care. Looking back on my patients who died at home, I can’t remember any situation where that decision turned out to be the wrong one.

Hospicare has a motto I always find uplifting: “It’s about how you live.” Dying at home surrounded by the people and things we love is one way to celebrate life all the way until the very end.

Pat Hayes, MD, is a retired physician from Cortland County. He serves on the board of directors for the Hospice Foundation of Cortland County and was the board president in 2015. He currently writes a monthly column with Jackie Swift on hospice for the Cortland Standard. This article first appeared in the February 4, 2017, issue of the Cortland Standard.

 

Talking About Hospice

by Dr. Pat Hayes

Talking to an ill loved one about hospice can be hard. It’s awkward and uncomfortable for most of us. We fear offending the other person, or worse, causing them emotional pain. I’ve seen this huge reluctance to even mention the word “hospice” in both family members and in physicians.

But if you have a loved one who is facing a serious or terminal illness, one of the best things you can do is to help them understand the comfort hospice provides. Begin the conversation about hospice early enough so they will be able to take advantage of all the services available. Remember, your loved one is eligible to go on hospice when they have six months or less to live, as determined by a physician.

Even if you’re ready to talk to your loved one about the benefits of hospice, how do you break the ice? That’s a question physicians struggle with, too. As compassionate human beings we don’t want the patient to feel that we’ve given up on them, so we keep waiting for the patient, or their family members, to give us signs that they’re ready for the hospice talk. All too often everyone stays silent. As a result, hospice isn’t even discussed until the last week of life. At that point, the patient is unable to utilize all the services provided by hospice—services they could have had for months!

I don’t have a one-size-fits-all suggestion for how to begin the conversation about hospice, but here are some pointers that can help you choose your own course of action.

If you want to approach the subject of hospice one-on-one with your loved one, choose a quiet, comfortable place without distractions in which to do it. Choose your first words carefully. You might try something like “I want to talk with you about your illness. There may be a time when we may need to focus on your comfort instead of a cure, and I’d like to discuss the options with you.” Or, “Your last stay in the hospital seemed hard on you; I think there’s a way to avoid that in the future.”

These types of openers put emphasis on a future need for hospice. They can give your loved one the reassurance they need to think more clearly about hospice now. After the opener, you can explain more about what hospice is and what it provides.

Another way to approach the topic of hospice with your loved one is to do it in the presence of their doctor. Accompany your loved one to a doctor’s appointment and then use the opportunity to draw the physician into the conversation. A good opening line could be something like “Doctor, what do you think about hospice? Can you tell us something about it?”

In this way, you can begin a conversation some doctors may be uncomfortable initiating. In a three-way conversation, you can facilitate understanding by providing prompts as needed, such as “Doctor, can you tell us more about how hospice will help us avoid hospital visits?” Or you can encourage your loved one to participate in the conversation by asking, “What do you think about what the doctor just said?”

Don’t feel you have to wait for your loved one’s doctor to call hospice. If they live in Tompkins or Cortland Counties, you can call Hospicare, at 607-272-0212, to start the process. Your attempts to help your loved one understand hospice and utilize its services sooner can be a great expression of your love. The comfort and compassion provided by hospice can make a real difference in the quality of life they experience in their last months.

 

Pat Hayes, MD, is a retired physician from Cortland County. He serves on the board of directors for the Hospice Foundation of Cortland County and was the board president in 2015. He currently writes a monthly column with Jackie Swift on hospice for the Cortland Standard. This article first appeared in the January 7, 2017, issue of the Cortland Standard.

How Hospice Helps: One Patient’s Story

by Pauline Cameron, RN, CHPN

Pauline
Pauline Cameron, RN, CHPN

I worked with a patient who was in his late 30’s and had been diagnosed with an aggressive form of colon cancer. At the time of his referral to hospice, we had been told that his pain was not well-controlled. On my arrival at his home, the patient was lying on the sofa. I explained the 0-10 scale for rating pain and asked him to give me a number; through gritted teeth, he said, “Nine.”  And it was clear what our first priority had to be…

We quickly got his pain down to “6,” at which point he was able to engage in conversation and looked much more relaxed. Over the next several days we visited him twice a day and worked with his MD to adjust the doses of four different drugs, as he actually had multiple kinds of pain – a narcotic, a neuropathic med (for nerve pain), a steroid, and an NSAID (e.g. ibuprofen) for bone pain.

One day I walked in and, as usual, found him lying on the sofa.  I said, “OK, you know the drill – what’s the number today?” He gave me a big smile and, making a circle with his thumb and index finger, said “Zero.”

Yes, that patient died, and that was sad. But before he died he got up from that sofa and took his children to visit Marineland and took them fishing and went to visit his parents once more. He really lived until he died. Excellent pain management gave him back what was left of his life.


Pauline Cameron, RN, CHPN was a Hospicare staff member for many years until her retirement in 2014.

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Families More Satisfied when Hospice is Involved

Founder of the modern hospice movement, Dame Cicely Saunders once said “How people die remains in the memory of those who live on.” At Hospicare, we recognize the great importance behind Dr. Saunders’ words. Our goal in caring for our patients and supporting their families is for death to be a peaceful, natural experience and not something to be feared.

Reuters reports that a recent study by the Journal of Clinical Oncology (online on December 19, 2016) found that families of cancer patients were more satisfied with the treatment and care their loved ones received if hospice was involved. The families surveyed for the study were more likely to indicate that their loved ones had the right amount of pain medicine and help with breathing difficulties when they had care and support from hospice.

Hospice is generally defined as being appropriate for people whose physician indicates they have less than six months to live. Unfortunately, many patients and families wait until much closer to the end to ask for our help.  “Our findings suggest that earlier hospice enrollment is associated with better symptom management, less pain, better quality of care, and a higher likelihood that patients will receive the care that they want in their own environment,” said study co-author Dr. Alexi Wright of Harvard Medical School and Dana-Farber Cancer Institute in Boston.

If you want to learn more about the benefits of receiving hospice care, or palliative care, please visit the Get Support section of our website. Or call us at 607-272-0212.

Learning to Be With the Dying

We live in a death-denying culture making it difficult to talk about death, to know how to be, and what to say, in the presence of the dying. My mother’s hospice team in Maryland were my first teachers not only about dying, but as it happens, about living too.

I found all of my interactions with the team quite remarkable and unlike anything I encountered with medical and nursing home staff during that period of her life. Only later did I realize I was responding to the quality of their presence—being grounded in the moment, open to whatever happened and completely authentic in their responses.

That quality of presence is the thread I followed from my mother’s death, to volunteering with Hospicare in direct patient care and sitting vigil, and more recently, to completing the Contemplative End-of-Life Care (CEOLC) Certificate Program for health care professionals and hospice volunteers.

The program integrates the spiritual dimension of dying and death with the practical aspects of hospice and palliative care. The instructional methods included individual study, online interaction with other students and instructors, an 8-day residential retreat, a daily contemplative practice, self-reflection and journaling.

We built skills for communicating about dying and death; helping patients find new meaning; facilitating the process of resolving unfinished business; and supporting the bereaved. We explored different cultural attitudes, religious beliefs and practices about dying and death. We examined our own attitudes about death and explored ways to prevent burnout.

At the heart of the program is the cultivation of compassionate presence—referring to how we are when providing care—being in the present moment fully attentive, receptive and responsive to patients and their families.

“Extending our compassionate presence to a fellow human being is a simple act. There is nothing special about it. It requires a willingness to be aware, open and loving. This is not always easy. We are required to drop our habitual ways of doing things and any agendas we may have… We may think that we can do “compassionate presence” by assuming the right outer appearance, … The truth is, we cannot do “compassionate presence”, we can only be compassionate presence.”

—Kirsten DeLeo, CEOLC Instructor

The course took me on an incredible personal journey and provided a very useful set of skills to integrate into my work as a hospice volunteer. It also reminded me of the importance and value of being fully present in the moment, the need to be comfortable with silence, and the power of truly listening not only when we attend the dying, but at all moments and in all situations.


Angela Mennitto is a Hospicare patient-care volunteer. This article about her experience previously appeared in our e-newsletter.

We Are Doing Profound Work

by Lisa Schwartz, RN

The first time I visited Hospicare was during a clinical rotation during my last semester of nursing school. As soon as I walked into the Residence, I knew how special it was and that one day I would work there.Three long years later, after going home to help my parents,then working on the fourth floor at Cayuga Medical Center, I am now a nurse in the Hospicare Residence.

I feel proud to say I work at Hospicare. I haven’t tired of hearing how moved people are by what we do, by the kind of care we give. I believe we are doing profound work in our little six-bed Residence that is really a chapel in disguise.

One night I held a patient’s hand as he died because his wife and daughters were not there. The gratitude they felt that he did not die alone, that someone sat by his side as he left this world, made me weep. I was the one who got the gift. Sitting with him was a privilege.

Sometimes when I am tired or my back hurts, I forget the bigger picture of what we do within the Residence walls. I forget that we have created a place where people come to live as they walk toward the end of their lives. I forget, in those moments, that every day I come to work and tend to my patients is an honor that is almost indescribable to anyone who doesn’t work here.

How can I explain what it means to wash a patient who has died, how the tenderness of it can bring tears to my eyes? How can I describe how holy and sacred this work is? We are there to care for those who are loved and adored and can no longer be at home. They are placed in our hands with trust and the hope that we will do what we do day after day after day. At the end of my shift, I tiredly walk to my car knowing we have all worked hard to make our patients comfortable and to provide a place for them to gently lay their heads,and that we will do it all again tomorrow.


Lisa Schwartz, RN, was a nurse in the Hospicare Residence when she wrote this essay about the rewards of her work with patients and their families.

The Heart of Hospice Social Work

Learning the Wisdom of Humility

by Jeff Collins

I was a social worker for Hospicare for 22 years, and I truly feel these years at the agency have been a profound blessing. There are many facets to this sense of blessing, but I think the deepest and richest part has been the way it has helped me see another human being as a fundamental mystery. I am coming to learn that it is my job to meet that mystery, to learn about it as best I can.

At the same time, I have a deep-seated tendency to think I know what is best for another. So much that is behind my sense of knowing what is best for another depends on my desire for him or her to live and die, and to experience loss, in a way that I am comfortable with. Now I begin to see that when I meet another person, I am meeting an unfolding world, with all of its history and momentum, its joy and pain and confusion and wisdom. And I have slowly started to understand the wisdom of an increasing humility.

Very early on in my work at Hospicare, I spent a year doing bereavement counseling with a woman who had just lost her husband. We would meet weekly, and she was generally in a state of desolation, living the question, “There is nothing for me in this life anymore, why would I want to go on?”

For quite a while I found myself trying to convince her that of course she should go on in this beautiful life of ours. She put up with me and maybe benefited from my way of being with her. But in one particular session, it finally dawned on me that I really knew nothing about this woman and her real situation. I was too busy trying to convince her of my point of view. But what did I really know about her, about the real meaning in the arc of her life, about why she was in this world and when she might be done with this world, even if her body continued to survive? I was trying to convince her of a point of view, like a lawyer trying to win an argument. So to some degree a real sense of humility landed in me, and I was much more able to meet her in a much more open way.

This gift of humility and the ability to connect with patients and their families has come to feel like the heart of my “craft” as a hospice social worker. It has lead to a deepening sense of coming home into my own life, and into life in general. All the wonderful, beautiful Hospicare patients I’ve worked with through the years have led me to this place in my own development, and I am grateful.


Jeff Collins was a social worker with Hospicare for 22 years until his retirement in 2014. He continues his involvement as a volunteer and member of our Ethics Committee. This article was originally written for our February 2014 e-newsletter.

What Caregivers Can Expect from Hospicare

In poll after poll, Americans consistently say they want to die at home. Hospicare, like all hospices, is set up to help our patients do just that. When patients choose to receive our services, they immediately begin to receive care based on the principles of comfort, dignity and choice. This individualized patient- and family-centered care is most often provided in the comfort of the patient’s own home. Yes, it’s true: our board-certified hospice and palliative physicians and fully credentialed interdisciplinary teams of nurses, aides, chaplains, social workers and counselors make house calls! In addition, we arrange for any needed medical equipment such as special beds, wheelchairs, oxygen tanks and nebulizers to be brought to the home so that the patient can be as comfortable as possible.

Knowing that their loved one can remain at home while being cared for by professionals trained in end-of-life care can often ease the minds of the patient’s family members and friends. But there is another piece to the end-of-life care-giving puzzle that is also extremely important: the primary caregiver. While Hospicare team members will visit patients in their homes, those visits are usually an hour at a time, a few times a week. The main caregiving duties still fall to the patient’s primary caregiver, usually a family member.

We will do all we can to assist the primary caregiver. Our social workers and bereavement counselors are available to help with problems the caregiver may be experiencing, including practical problems as well as feelings of grief or inadequacy that can surface during this stressful time. Our nurses will educate caregivers on care and symptom management, and we have a nurse, on call 24-hours a day, seven days a week, to answer questions that may arise. We can also provide trained volunteers to visit with the patient an hour at a time, freeing up caregivers to have some private time for themselves. Many caregivers find that this assistance is a great support to them both physically and mentally.

Sometimes, however, a patient’s needs become too much for the caretaker to handle at home. When that happens, the Nina K. Miller Hospicare Residence is an option for the patient. At the Residence, we provide intensive around-the-clock care in a homelike setting, which can lift the burden of constant responsibility from the caregiver, providing much-needed relief.