Sometimes, we might not have the words right in the moment, but through contemplation and the creative practice of writing, the depth of understanding comes. Here a son reflects on the gifts his mother gave him in a letter he wrote to her after her death. Writing a letter to a loved one (even if you never send it) can be a healing act.
Thank you Steve Demakos for sharing your reflections on being a caregiver for your mother. It is an inspiration to us all to cherish the times we have with loved ones.
Thank you from the bottom of my heart for the gift you have given to me for the last five years- making my home your home with warmth, laughter, smiles, and lots of hugs. You may not know this, but in this time you taught me the truest meaning of love. It’s as if you have given me two lives. The first, of course, many years ago in a New York City hospital. The second life beginning the day I started helping you with your Alzheimer’s and continuing for the five years you lived with me at Valley View Road here in Ithaca. This is where you showed me that giving is more powerful than taking and can actually heal a fractured relationship. You and I became best friends and in our five years together you offered to me the fierce love of a mother and the genuine loyalty of a best friend. You and I together- remember I would always tell you we were a team- showed the world that having Alzheimer’s doesn’t mean that a good life is over. Together you and I started new family traditions. Your favorite: every Sunday morning a homemade cinnamon bun with your coffee. My favorite: the deal that we made that whenever you would give me a smile, I would give you a hug, which turned into countless hugs.
On Thanksgiving morning, when you decided it was time for you to move on, I was overcome with a sense of loss that no words could ever describe. I have come to realize that that may have been your greatest gift to me. As time goes on, I realize that you and your love haven’t gone anywhere. You and your love reside deep inside me, exactly where they were that day in the New York City hospital when you helped me come into the world.
Mom, I will close for now with one more of our traditions: as I would say to you every night before you would fall asleep, “thank you for being my mom”. And you would say to me, “it’s my pleasure”.
This time of year we traditionally gather with friends and family. That may look a little different this year, but we can still cultivate gratitude in our hearts.
November is also National Hospice and Palliative Care Month, a time to pay special recognition to the work done every day by these skilled individuals, whose dedication to Hospicare’s mission has withstood even a global pandemic.
The story of Norma Helsper (as told in the video below) highlights the continuous service our interdisciplinary team has provided to all those that need our care in our community.
We also wish to honor those advocates, volunteers, referral partners, and donors whose support sustains the good work of Hospicare. We thank YOU for all the many ways you support Hospicare!
From the moment Norma Helsper moved into the Hospicare residence, staff knew they were greeting someone special. Phones rang off the hook with dozens of friends asking about visitor restrictions, and whether it would be okay to drop off flowers or her favorite custard. “Norma’s got spunk and you’re going to love having her there,” one caller told me.
So maybe I shouldn’t have been surprised when I walked into her room for the first time.
Norma is perched in her recliner, carefully studying her absentee ballot for the New York primary election.
“You’re voting!” I say.
“Of course I’m voting!” she exclaims. “Of COURSE! This is an important year. Too important to miss.”
Norma folds her ballot and places it on her table, as I settle onto the edge of her bed. Norma’s mom is sitting across from us, answering a cell phone that never stops ringing. Because of Hospicare’s COVID-19 restrictions allowing only one visitor in the room at a time, Norma’s sister sits outside, waiting for her turn.
“It’s awful,” Norma says when I asked about her experience in facing end-of-life in a pandemic. “This makes it so hard for me to see my friends, though I’m grateful that one can be here at a time. I know that’s not true in so many other places.”
Thirty-three years ago, Norma moved from her childhood hometown outside Chicago to the Finger Lakes. She had accepted her dream job in the Spanish department at SUNY-Cortland, where she quickly became close with her colleagues. The tight-knit group of friends are many of Norma’s callers and visitors these days, and they show up in ways both big and small. Luscious bouquets of flowers fill every surface in Norma’s room, and greeting cards cover her bulletin board.
As we chat, Norma points to a wilted flower arrangement on a table behind me, and kindly asks if I can remove it. No sooner is it gone and she is back on the phone. “Good news!” she tells a friend. “There’s room for more flowers! Bring some anytime!”
Norma and her husband first settled in Cortland, and eventually moved to Ithaca, where they bought a home in Fall Creek. “Oh wow — the Halloweens in Fall Creek!” she chuckles, referring to the hundreds and hundreds of families that flock to the neighborhood every year for candy and community. “That night is something, isn’t it?”
Norma is easy to talk to and quick to crack a smile, so I understand why people gravitate towards her. One of those people – a friend named Mary — is the reason Norma came to know about Hospicare.
“Mary was a wonderful, wonderful friend,” Norma explains. “One day, she called me up and said, ‘Norma, there’s no easy way to say this: I have lung cancer’.”
Eventually, Mary moved into the Hospicare residence.
“I remember it was room 3 because that one has the larger deck,” Norma recalls. “And one day we had a little soiree there with a whole bunch of friends. We really had the nicest afternoon. It was such a nice moment, and a truly great memory of Hospicare.”
In the years that followed, Norma continued to support Hospicare, raising money for the agency as a swimmer for Women Swimmin’ for Hospicare.
Surgery and treatments kept Norma’s ovarian cancer at bay for several years, but this spring, it became obvious that Hospicare is where she needs to be. “The people that take care of us are amazing,” she says. “The rooms are comfy. The birds are beautiful. The grounds are beautiful.”
Norma’s days are filled with friends calling her phone, trips through the Hospicare’s gardens, and visits with her good friends from SUNY-Cortland and her church, the First Unitarian Society of Ithaca.
Twice now, three of her talented friends have come by to play music for Norma to enjoy – since they aren’t able to be in the residence together, they pull up a picnic table and sing to her from below her porch window.
That’s also where the minister from the Unitarian Church planted 16 colorful flamingos in the grass, to give Norma a laugh.
Norma remains upbeat, but this hasn’t been an easy road. Norma’s husband needs round-the-clock care and lives in a nursing home. The couple has not been able to get together, not even virtually, since he doesn’t know how to work the technology. “It’s very hard,” Norma tells me. “It’s what we both had to do and it was the right decision. I know that. But it’s still hard.”
Norma’s only daughter lives in a group home some 45 miles away. Restrictions there mean no residents are allowed to leave – the staff made a special exception for Norma, so she was able to see her once so far. But of course, that’s not enough.
And then there’s her 92-year old mother, Betty, who traveled from the Chicago area to be with her daughter for a week. She hopes to return soon, but traveling is difficult at her age, and she isn’t sure when she’ll be able to make the trip.
I ask if I can take a photo of them together. “Of course,” Norma says with a smile. Betty is a little more reluctant, quietly admitting that she hadn’t taken a single photo of Norma since she moved to Hospicare.
Betty pulls out her phone and swipes to find a picture from last fall, when Norma’s cheeks were full and her body stronger. “Isn’t she beautiful? Just so beautiful.”
Norma encourages her mom to take the photo with her, and Betty moves carefully to Norma’s side.
“This isn’t what is supposed to happen,” Betty says to Norma, once the photo has been taken and she’s settling back into her chair. “I’m supposed to go before you.”
Her voice quivers. “This really isn’t what is supposed to happen. It’s just not.”
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.