Celebrating the holidays with family and friends can provide much needed comfort and connection after a recent diagnosis of a serious neurological condition.
But the events and expectations of this time of year may also prompt feelings of sadness, isolation or shame.
The UCLA Health Palliative Care Program, which houses the neuropalliative care clinic, has physicians, nurses and social workers who help people navigate the opportunities and challenges of the holiday season, said Cara Siegel, MD, neurologist and palliative medicine specialist.
“Palliative care is an interdisciplinary field of medicine which aims to take care of the whole person. That involves tending to physical manifestations of disease and emotional or spiritual distress associated with serious illness as well,” she said.
Dr. Siegel, an assistant clinical professor at the David Geffen School of Medicine at UCLA, and palliative care social worker Christina Rothans, LCSW, APHSW-C recently discussed how families can take advantage of the precious time they have together.
They also shared recommendations for avoiding some of the stress and unrealistic expectations that holiday gatherings often bring.
“When someone is experiencing serious illness, it can really help to have the support of family, and also to reconnect with traditions that are familiar,” Dr. Siegel said. “I have seen a lot of patients really appreciate the benefits of celebration.”
Holiday season challenges
Dr. Siegel said the holidays can pose difficulties after a diagnosis of ALS, brain tumor or neurodegenerative disease such as dementia or Parkinson’s disease, which can cause loss of function in mobility, speech or cognition.
“Our patients may struggle with having family and friends see changes that they’re experiencing due to their condition that can make those gatherings particularly challenging,” Dr. Siegel said. “People may experience embarrassment or shame around those changes, and feelings of isolation.”
She said she would encourage people to take part in the holiday celebrations that hold meaning for them, while allow space for grief and grace toward themselves.
Rothans said after a diagnosis, some people may wonder how many celebrations they have left, bringing uncertainty at a time associated with joy.
“That can lead to a sense of pressure to really enjoy and soak in the time knowing that it may be limited, but it can also lead to a profound sense of sadness,” Rothans said.
Patients are often concerned about burdening others, Rothans said, but time with family and friends can be a “beautiful salve” for the difficulties of serious illness.
“Let the people in who love you,” she said. “They want to love you. You need their love. And loving and caring for you is one of the few guaranteed ways your family can help you in what can often feel like a helpless situation.”
Importance of traditions
Dr. Siegel said the holidays and the familiar rituals of tradition can reconnect people to their identities.
“Having these special events can be a real comfort and an important thing to look forward to, and for families to gather together, which is critical,” Dr. Siegel said.
For people with memory loss, pleasure may come from the familiar aroma of turkey baking in the oven or the scent of cloves and cinnamon in a favorite cookie recipe.
Smell is processed in the brain differently than any other sense, with a direct connection between the neurons that process smell into a circuit that processes memories, Dr. Siegel said.
“Smell can trigger memories in a deep and immediate way,” she said.
Dr. Siegel said the sensory experience of smell and taste is also a wonderful way to celebrate with loved ones who may not be able to communicate verbally anymore.
Support for families
Rothans said coping with neurologic disease offers patients and their families a sense of perspective to help manage the “frivolous stress” of hosting, buying gifts or traveling.
“At the end of the day, being with the people you love is the most important thing and that’s so heightened when someone’s health is comprised or time is precious,” Rothans said.
The holidays can also bring challenges for caregivers.
“Caregiving is an extremely difficult job that is generally underappreciated and poorly supported in our culture,” Dr. Siegel said. “I would encourage caregivers to ask for help from those around them as they move into the holiday season.”
Rothans suggested minimizing the work of entertaining.
“Order out if you can afford it,” she said. “Don’t worry about preparing a gourmet, five-course meal. When people ask to bring something, let them and don’t hold yourself to carrying everything on your shoulders.”
Rothans acknowledged that some families will spend this holiday season grieving a loved one.
“There’s a lot more to consider when you’ve lost someone,” Rothans said. “I give my patients permission to disengage from certain traditions. For some people, engaging in the same tradition is comforting and helps keep that loved one alive, for others it’s such a deeply painful reminder of their absence and it feels better to form a new tradition. The holidays call for an individualized way of navigating loss.”
Dr. Siegel and Rothans said the holidays can be the right time to seek help from a mental health professional. The UCLA Health palliative care team, which offers care at any stage of illness, often helps their patients and families as they move through this time of year.
“That is part of our role – to provide emotional support in the setting of serious illness, including when you’re moving through the holidays,” Rothans said.
