Love in the Final Chapter: Caring for a Loved One in Home Hospice

October 15, 2025

When it comes to end-of-life care, 71% of Americans believe the goal should be to help people die without pain, discomfort, and stress. The focus of hospice care is on quality of life and symptom management, and it is designed to provide comfort to individuals with a life expectancy of six months or less. 

A team of medical professionals addresses the patient’s physical, psychological, and spiritual needs on a case-by-case basis, ensuring that every patient receives a care plan tailored to their specific needs. Care is most often delivered in the patient’s home, and the hospice team can support caregivers during this process.

Quality is Key

Hospice is end-of-life care, but that doesn’t mean someone receiving care will pass right away. While doctors recommend hospice when a patient only has six months or less to live and is no longer responding to curative treatments, many patients live longer. In such cases, what matters still is a patient’s quality of life, not quantity.

“Each person’s journey at the end of life is different,” says Jessica Kelly, a licensed hospice nurse in New York. “We tailor our care to meet those unique needs, whether that’s managing pain, supporting emotional well-being, or helping families share meaningful moments together.” 

Home Care Takes a Toll 

While it is nearly everyone’s preference to pass away in the comfort of their own home, the task of caregiving can be more than loved ones expect. “I do think that when patients are at home, they are in a peaceful environment,” says Parul Goyal, a palliative care physician. “It is comfortable for them. But it may not be comfortable for family members watching them take their last breath.”

The burden put on loved ones, especially spouses, can cause caregiver syndrome, which is characterized by the stress and burnout that comes from providing constant care to someone who is chronically or terminally ill. 

“Our long-term-care system in this country is really using families, unpaid family members,” says Katherine Ornstein, a professor of geriatrics and palliative medicine at Mount Sinai. “What we really need to do is to broaden the support that individuals and families can have as they’re caring for individuals throughout the course of serious illness.” 

Self-Care for Caregivers 

Providing care to a hospice patient can be both rewarding and difficult. Social psychology researchers Richard Schulz and Joan Monin found that caregivers suffer when they witness their loved one’s suffering without feeling like they can remedy it. It becomes important not just to care for the patient but for caregivers to care for themselves as well. 

One way to start accepting a terminal diagnosis is to begin getting a loved one’s affairs in order. It can be helpful to collect necessary documents and passwords and to begin sorting through possessions. Staying busy during the care process can help manage emotions as they arise. 

Handling Grief 

It’s easy to get paperwork and belongings in order. It’s not as easy to manage your grief. The loss of a loved one is among life‘s most significant stressors. Grief can affect every aspect of your health. While everyone’s experience is different, it is common to feel intense emotions during a loved one’s illness and after losing them.

Here are ways caregivers can take care after loss: 

• Express your emotions. Bottling them up will only intensify them. 
• Don’t put yourself on a timeline. People move forward at their own pace. Trust that your pain will lessen over time. 
• Take care of yourself as you grieve. Eat nourishing meals, stay hydrated, and sleep enough. 
• When you’re ready, exercise. It can reduce stress, tension, and sadness. 
• Hospice providers make grief support groups available to anyone who has lost a loved one in hospice care. 
• The Hospice Foundation also offers a newsletter to help during bereavement. 

When to Seek Help 

Most people find a way to adjust to their loss, but it is a painful and uncomfortable process. About 10% to 15% of people who are grieving have a complicated reaction to their loss. Grief experts agree that if grief is unmanageable, meaning someone has not returned to their pre-loss level of functioning within six to 12 months, it may be time to seek the professional help of a grief counselor. Your hospice team can help you find the care you need. 

Insureyouknow.org

Handling a loved one’s affairs is one way caregivers can manage their grief. With Insureyouknow.org, you may organize financial documents, property records, and other documentation of personal effects. Getting everything in order can bring you some peace of mind during emotionally challenging times. 

Looking after Elderly Parents Remotely

March 1, 2024

Taking care of loved ones without being close by is a challenge. Whether you live a long drive away from aging parents or in another state, long-distance caregiving can become emotionally exhausting. If that sounds like you, know that you are not alone. Nearly 15 percent of caregivers live an average of 450 miles away. If you have recently found yourself looking after your parents from a distance, then here are some simple strategies to help you along the way.

Evaluate Your Strengths and Outsource the Rest
Be honest with yourself about your strengths. Maybe you’re comfortable handling finances but not as comfortable determining medical needs. Pinpointing the areas of need that you’ll be most suitable for is the first step in delegating the rest. You may have siblings who live closer to your parents and are willing to accompany them to their doctor’s visits. Other helpful skills include organization and communication, which could be utilized to organize schedules and communicate with medical professionals and caregivers. Once you determine what you’ll be best at handling, then you can begin to make plans to fill in the gaps.

Create a Team for Support
Speak with the rest of your family and close friends about who can help with your parents’ care. Coordinating with everyone to determine what each person is willing to do will help everyone be on the same page and turn creating a care plan into a team effort. Even if you don’t have any other siblings or family members who are able to help, then you should still meet with your parents and include them in their own care planning. For instance, ask them what you can do that will be most helpful. It’s important to remember that you don’t have to handle everything alone and to try and outsource anything you need help with as much as possible.

Establish Access to Information
Once you determine who the primary caregivers will be and who needs to be in charge of what, then it’s time to make sure those people have access to the appropriate information. Make sure that the person designated to handle bill-paying and account management on behalf of your parents has the ability to do so. Establishing the rights to have medical information released to caregivers as well as decision-making rights is another imperative. This can also be a legal issue down the road, so making sure that you or another trusted party is the power of attorney, who is appointed to make financial and medical decisions, will need to be determined. 

Revisit Living Arrangements
Sometimes a loved one’s health requires them to be closer to you. If it’s possible to relocate to where they live or have them move in with you, then that may be something worth exploring. If it’s not possible to live together, then senior living communities have the upside of being able to provide 24/7 care. Many older people don’t require full-time care though, so if relocation isn’t feasible, then hiring a home care aide or personal care assistant is another option.

Schedule Regular In-Person Visits
If you cannot live close to your parents, then making plans to see them will accomplish several things. First, you’ll instantly alleviate some of the caregiver guilt you may be experiencing just by knowing when you’ll be able to visit them next. Second, you’ll be able to check on them in-person, as you may not have an accurate assessment of their condition and needs from a distance. “It’s hard keeping a handle on their health, how they’re doing, physically, mentally, psychologically and emotionally, when you’re not there,” says Amy Goyer, AARP’s family and caregiving expert. “Isolation is a big thing and they can tell you, oh, I’m doing fine and everything on the phone, but is that really what’s happening?”

Lastly, but most importantly, you’ll be able to spend some much-needed quality time with your parents when visiting. If you are not the primary caregiver, then coordinate with them on when the best time to visit is and offer them a break. Plan in advance what you can do when you’re there to help out. Then speak with your parents about what they would like to do with you during your visit. Since visits can go by quickly, especially when there is so much to do, set priorities ahead of time about what’s most important once you’re there.

Remain Connected When You’re Apart
Schedule regular phone calls with your parents and ask for updates from their caregivers. With their permission, you may even choose to attend their telehealth visits and doctor’s appointments virtually. “The frequency of contact is dependent on the type and level of care needed,” says Iris Waichler, author of Role Reversal, How to Take Care of Yourself and Your Aging Parents. “It should be a collaborative decision, if possible, rather than a unilateral mandate from the caregiver.”

Regular communication can keep your bond with your parents strong, as long as it remains an enjoyable experience for all of you.

Take Care of Yourself as Well
Caregiving can come with a heavy emotional load. It will become just as important to check in with yourself in your new role as caregiver. “Caregivers may often feel like they can do more and this can cause ruminating thoughts,” says Brittany Ferri, geriatric care occupational therapist. “In this instance, they may benefit from practicing positive self-care and self-talk along with their loved one to keep the lines of communication open while relieving stress.”

It’s hard to be a good caregiver, when you’re running on empty, so taking care of yourself as well is just as important as taking care of those depending on you. Show yourself compassion, make sure you’re recharging, and be kind to yourself.

Insureyouknow.org
While it can be a challenge to care for your parents from a distance, that doesn’t mean it’s not manageable. By planning ahead and creating a care team, you can make sure your parents are cared for even when you can’t be close at all times. Insureyouknow.org can help you compile care plans, schedules, financial information, and medical records all in one place. Then you can rest easy that you have a plan set in motion, ensuring that your parents will be well-taken care of.