How Can I Support A Loved One In Hospice From Long Distance?
The experience of having a loved one enter hospice is an incredibly overwhelming experience to endure. Lives are changing, family dynamics are changing, and emotions are high. When your loved one is entering hospice care while you’re in another state, across the country, or farther, it adds another layer to an already challenging experience. This blog will explore how to communicate, collaborate, and provide emotional support for your family members while you are long-distance.
Understanding What Hospice Care Truly Means
It’s important to understand what hospice is before you can develop a proper plan to support loved ones from afar. Simply put, hospice is end-of-life care. Hospice is often utilized for a patient who has a terminal illness that cannot be treated further by medical professionals. It can be provided at home, at the hospital, or in a dedicated hospice facility. Hospice care understands that death is a part of life and focuses on providing dignity and comfort in the patient’s final days. Contrary to common belief, hospice doesn’t just provide care for the patient but also offers services and resources for the patient’s family as well.
Building a Relationship With the Hospice Team
A hospice team will be assigned to your loved one once they enter hospice care. This team will consist of a variety of nurses, hospital aides, social workers, chaplains, and sometimes hospice volunteers. Especially for families far from their loved ones, this community of workers and volunteers is there to bridge the gap when you cannot be physically present. Introduce yourself to the care team early on so you can begin building rapport and discuss some parameters on communication and care updates. The hospice team can help you understand HIPAA and the paperwork you may need to complete to be the point of contact so that they can share information freely with you. If you find a trusted person on the hospice care team, discuss a schedule for regular check-ins on your loved one’s condition and comfort levels. With any family member undergoing the hospice process, building a relationship with hospice is vital. Still, as a long-distance family member, it becomes even more important to build strong relationships with the doctors and nurses during this time.
Coordinating Care and Communication With the Primary Caregiver
Every family is different when it comes to hospice care. Individuals in the hospital who receive hospice care will likely have a nurse as their primary caregiver. In contrast, folks who choose to receive hospice at home may have a family member as their primary caregiver. Regardless of who it may be, the caregiver is carrying a heavy daily burden. As a long-distance family member, it’s crucial to have open, non-judgmental communication with the primary caregiver. Offer support, and ask if there is anything you can do from afar to help support their individual needs while they are providing attention to your sick loved one. Trying to reduce their stress and any other outside burdens while they provide care for the sick is one of the most meaningful things you can offer them during this time. Arranging for others to take over care while they get some respite, reaching out to others in the community to provide meals, or just offering an ear to listen are a few ways you can support them.
Creative Ways to Stay in Touch With Your Loved One
It’s hard to know what is the right thing to do when faced with a dying friend or family member, but at the heart of any support you provide your loved one is a meaningful and consistent connection. Being long-distance makes this task more difficult, but not impossible. Calling to speak with your loved one is the most obvious option, but you can also take advantage of recordings, videos, and voice calls that can be played for them if they aren’t able to speak for themselves. Writing letters or making something for them is another way you can be there, without being there. Making a playlist of your loved one’s favorite music, or music that was meaningful to some of their favorite memories, is another way to communicate how much you love them from a distance. Get creative with your methods, but remember to stay adaptable as their condition will likely change during their time in hospice.
Helping Create a Comforting Environment From Afar
Creating a pleasing, calm environment is a high priority when you have family in hospice care. Whether your family member is conscious of their surroundings or not, there is dignity in spending their final days in a room that they would consider comfortable.
If you have other family members nearby, ask them to bring some personal items from home to help them feel as comfortable and at ease as possible. Items like picture frames, blankets and pillows, candles, or familiar fragrances, if candles are not permitted. Perhaps a speaker to play music, nature sounds, or even an audiobook that they might enjoy. Again, hospice is about bringing comfort in the final days, so consider what they might want if they were able to make those decisions for themselves.
Making the Space Peaceful: Managing Family Dynamics and Emotional Tension
Family dynamics can be tricky to manage during this time, as emotions are high and grief has the potential to bring out the worst in people. Remember that hospice is meant to keep peace and comfort for the patient. Consider creating a family group chat to deter any medical miscommunication. If there are unsavory relationships with the individual in hospice, ask the social workers for resources on how to handle them, or whether they can be present during a family meeting if necessary. Ask for information on support groups for other family members and yourself. If there are people who are not allowed to see the sick, give that information to the care facility to help them keep the peace while you’re not there. You want to help protect the sick, but you are also responsible for your own well-being. Don’t be afraid to reach out for resources on how to manage your grief during this process and beyond.
Planning a Visit to Be With Your Loved One in Their Final Days
If feasible, plan a visit with your loved one during their final days. Communicate with the hospice care team to be honest with you about the prognosis and the kind of time you might have before their final days. It will not always be clear when the best time to visit is, but the compassionate support of the hospice team will do their best to inform you when the end is near. Keep your travel plans as flexible as possible, as these situations are not always linear. Do your best to be emotionally prepared for how different your family member may look, and prepare for the chance of them being unresponsive during your visit. However, if an in-person visit is not an option, know that love can be felt from afar, and any goodbyes said from a distance are as important and special as those done in person.