Enjoy the recording of our Virtual Community Memorial. As we navigate these uncertain times, how we define and feel grief is changing. We mourn the significant loss of loved ones in our lives, as well as the 114,000+ Americans who died as a result of the pandemic. We grieve for the turmoil in our country, the loss of “normal,” and the ways in which we have had to modify our ways of life and our interactions with one another.
The COVID-19 pandemic has changed our lives in so many ways including the devastating impact on how we are able to mourn the death of our loved ones. When a death occurs, we have patterned ways of responding based on tradition, culture and religious beliefs.
These responses are comforting for both the bereaved and for those providing support. Soon after receiving word of a death, our support system mobilizes. People often begin showing up with food or flowers, jumping in to care for the children of the bereaved offering to run errands or help arrange a memorial event. Cultural or religious beliefs provide ritualized ways to mourn which offer comfort in their significance and predictability. These rituals mobilize community support for the mourners. Muslim communities wash the body, wrap it in a piece of cloth and bury their dead quickly and in the presence of loved ones. This allows the soul to rest peacefully. Christian and Jewish traditions call for close proximity with the dead in order for those left behind to confront their loss. Events such as Repass, and Shiva allow survivors to find refuge in their communities. In some cultures, those close to the bereaved will take turns sitting vigil with the family for days or even weeks after a death.
During this health crisis, social distancing has made it so that people are unable to grieve their loved ones in traditional ways. Without these rituals and the opportunity to be in the presence of the person who has died, see the casket and be around other people grieving the deceased, it can be harder for those grieving to make sense of the loss and eventually accept that their loved one has died. Having traditions to follow and a set of rituals enables people to integrate the loss into their life. Without this element of face-to-face support and left alone in quarantine, people experiencing losses may suffer more due to the isolation necessary for social distancing. Social isolation has also been shown to prolong grief.
In addition, we are in a stressful time, people are experiencing many losses beyond the death of a loved one ― including the loss of a job, savings, sense of identity and more. These additional stressors can get in the way of grieving normally, additionally those who would normally support the bereaved might be distracted by these stressors in their own lives and may be less emotionally available to provide support. Also, people are overwhelmed with fears about contracting the virus or losing more loved ones to COVID-19. These all-consuming feelings may prevent people from acknowledging their grief, but it’s important to create space for it. Delaying grief is not healthy and can lead to long-term physical and psychological challenges. Instead of holding grief in, find new ways to go through the grieving process and say goodbye to your loved one within the limits of social distancing.
You don’t have to be alone. It’s important to avoid withdrawing from friends in your grief even though we can’t support each other in person at this time. The best thing we can do when we are grieving it to reach out as much as you can to family members through phone calls and video platforms. Friends and family members can gather via chat conference to talk about their lost loved one, share memories or simply cry together and know they aren’t alone in their grief. Sending emails and letters to people in your network is another way to take part in a collective grieving process. I have often had clients speak about how meaningful it is to receive letters which include personal stories or experiences of their loved one that has died. Some families or group of friends start group text chains to check-in or share memories or thoughts of the deceased. The key is to talk to someone else about your feelings, rather than keep them bottled up. It’s important to find connection in whatever ways you can. Being intentional about the emotional bonds that are still present can provide some comfort, this is not the same as being able to have a hug or to sit together in close proximity but the virtual connections can be a way in which the emotional connections can be expressed where we are at now. If you lack the motivation to follow through on connecting, try to book times for phone calls and video chats. Arrange these conversations as appointments you must keep. Agree on times with people in advance so you are more likely to follow through. Of course, choose to connect with people who provide healthy support, are responsive and flexible about your needs. The amount of contact we need and want can vary on a daily basis and it’s helpful to connect with those who are understanding of this.
Funerals and memorial services are valuable both on a practical to provide structure in that they give people tasks and a way of coming together to grieve. They provide confirmation of the death though being able to view the body and grieve in community. Physical touch through hugging our love ones is incredibly healing. This coming together also empowers social support and connection, reassuring us that we are not alone in our loss. Celebrating a loved one’s life in a public group setting with others is a very healing part of the grieving process, but social distancing and stay-at-home orders mean many families must delay memorial services for an unknown amount of time. The uncertainty of when they might be able to honor their loved one in this way is difficult and anxiety-provoking. Recognize that this is temporary and although there is a delay, these services can still take place and it is important that they do in order. It can be helpful to think of these services as being delayed rather than cancelled.
Depending on where you live and how you’ve been social distancing, you may be able to have a small service with immediate family, and there are ways to include others in the experience. Many funeral homes are offering livestreaming of graveside services or larger, interactive virtual funerals. Some allow immediate family the right to attend the burial process, while still following the CDC recommendation of no more than 10 people gathering in the same space. Mourners can still drive by in their vehicles in a parade, staying in their car while offering their respects. Others have offered drive-thru windows with a video of the person on a monitor or in-person visitations with two people allowed in at a time and disinfecting between visitors. One benefit of virtual funerals is that people who ordinarily might not be able to attend services, due to living far away, finances or even a discomfort with grieving in public, are now able to participate. However, this process will not work for those who do not have or are uncomfortable with technology. It’s unclear when traditional funerals and grieving rituals will be an option in the future, but that doesn’t mean it’s impossible to process your grief and move forward in this uncertain time. Recognize your feelings of grief, loss and sadness as normal during this time.
Identify and acknowledge any thoughts feelings that arise and let yourself move through them. A wide range of feelings are normal during grief and it is often described as a roller coaster of emotions. Expressing whatever comes up can be helpful and writing out your feelings can be a therapeutic experience in times of grief. You can keep a private journal for your eyes only or even write a tribute to share with loved ones. Some people find healing through writing a letter to the deceased. Remember the times you spent together and share these memories with loved ones. Looking through photos can bring comfort, creating a photo slide show or music playlist can be another way of honoring and celebrating the relationship with your loved one. Just like a written tribute, it can be shared now online or at a future memorial service. Make a memory box, draw or scrapbook. Engaging children and adolescents in these activities can also give them an avenue to process their grief. Consider other rituals that will allow you to express your grief now…light a candle, create some art in their memory, plant a tree or cook your loves one’s favorite meal.
Generate a plan for coping. Ask yourself how you usually take care of yourself during a difficult time and modify these to work in the current situation. You can still do things like read, take a bath, go outside, eat healthy meals and nap. You might find it useful to think about how your lost loved one would like you to respond in these circumstances. You can use this exercise to help generate coping strategies. Recognize that less activities in our lives make more time for thinking and feeling, this can be good and also overwhelming. Distract yourself on occasion with activities you enjoy or try something new. Moderate your news intake and be gentle with yourself around fear related to the pandemic.
If more support is needed, reach out to the professionals. Grief support is being offered online by many hospices and mental health professionals including Hospicare. At Hospicare, we offer both individual and grief support in an online format. There are social media groups for grief support as well as many online resources. At hospicare.org/blog you can watch videos made by our interdisciplinary team with tips, resources and activities to cope with grief. Connecting with online communities of grieving people help grievers feel less alone. Talk to your doctor if you are experiencing physical symptoms of grief. Grief is hard, it’s a different experience for everyone and there is no right way to grieve. Practice self-compassion, allow yourself to have a good cry and take good care of your mind and body during this challenging time.
by Lucia Jander, M.D., Medical Director at Hospicare & Palliative Care Services
End-of-life. Dying. Death. These words make people so uncomfortable that they often soften them. We talk about loved ones who “passed away,” or “lost a battle,” or “went to heaven.”
There are many reasons to view COVID-19 as a dark time for our community and our world. It is. If there is a silver lining to a pandemic, it is that it makes people confront their own mortality, to think about their wishes, and – I hope – to become a little more comfortable with death as a part of life. This is a good time to open the door to those conversations with loved ones.
In hospice, every patient and family works with staff to develop a personalized care plan. Each patient shares with us their preferences for physical, emotional, social, and spiritual care. Some patients may desire music therapy; others may want help making amends with their family. Just as every person is unique, there is no “one size fits all” approach to end-of-life care.
How do you imagine your end-of-life experience? What medical or life-sustaining care do you want? Who are the family and friends who will be most impacted by your death? What do you want your legacy to be?
You don’t need to be sick or in crisis to have these conversations. My advice to my patients is to start with yourself. Spend time thinking about your desires, and what you want to articulate to your loved ones. Think of this process as creating peace of mind for yourself and a gift to the people who love you most.
Once you have your own thoughts together, here are some resources to get started:
Having the Conversation
Although end-of-life planning is critical for adults at every age, it can be difficult to find a way to introduce the topic of conversation to your loved ones.
Try to remember that by having the dialogue, you are doing your loved ones a favor because they won’t have to guess your wishes.
A Living Will is a legal document, that you can provide to your loved ones and your health care proxy to explain your decisions about your end of life. A document like “5 Wishes” can help you think about medical, emotional and spiritual questions, providing a structure for you to reflect on these issues and start the conversation with your health care proxy, other medical providers, and your family.
A Health Care Proxy is a legal document designates a person who will make health care decisions only if you are unable to make them yourself. Because it is difficult to know all the choices that will need to be made, it is important to appoint someone you trust and who knows your core values. Be sure that every one of your medical providers has a copy of this proxy, keep a copy at home, and send a copy to your attorney, if you have one. It’s also a good idea to think about naming an alternate proxy, in the event your primary proxy can’t perform their duties; make sure both individuals are unified around you and your expressed desires.
A Medical Orders for Life Sustaining Treatment (MOLST) form outlines 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 will guide medical decisions. If you do have a Health Care Proxy, this document can guide their choices on your behalf.
A Do Not Resuscitate Order (DNR) determines what life sustaining measures, if any, you would like if your heart has stopped beating and you are not breathing. While a DNR can stand alone, it is also a part of the more comprehensive MOLST form.
A Durable Power of Attorney names someone to make financial decisions when you can no longer do so. If finances are complicated or there are exceptions to the use of your money, this document can be drawn up by a lawyer.
A will indicates how your assets and estate will be distributed upon death. The person you name within your will as the executor is responsible for ensuring your wishes are met. Your will may also specify arrangements for care of minors, gifts to loved ones or favorite charities, and funeral and/or burial arrangements
A living trust provides instructions about the person’s estate and appoints someone, called the trustee, to hold title to property and funds for the beneficiaries. A living trust can provide a detailed plan for property disposition.
If you’d like to be an organ donor, you can fill out an organ donation card and carry it in your wallet. In New York State, you can also have this choice listed on your driver’s license by contacting the DMV.
Put together important documents and information so that they are easy to access in a time of stress or uncertainty. Among items to consider putting together in a safe place, ideally in a fireproof box:
bank account numbers, both checking and savings
investment account details
safe deposit box keys
Social security card and other identification like birth certificates and passports
Utility and other monthly billing information
mortgage, deed, or lease for your home or residence
Internet account numbers and passwords, including subscriptions and email accounts
Important phone numbers for family members, your lawyer, doctor, and financial planner, pastor or priest, and your preferred funeral home.
Dying is not something we can – or should soften. Death is a part of life, and planning for it can make all the difference to the emotional health of those you leave behind.
If you need help connecting to resources, or ideas for how to start this process for yourself, please contact us at Hospicare. We are here to support residents of Cortland and Tompkins counties, and we speak to individuals and groups about the importance of end-of-life planning. Our goal is always to make your wishes are expressed and respected, so email firstname.lastname@example.org or call 607-272-0212 with any questions.
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.
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.
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 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.