Gifts. Decorations. Cards. Meals. Family. No matter how much we love the winter holiday season, the related demands and expectations can pack a big punch of stress. For family caregivers tending to the needs of an elderly parent, spouse or other relative, the pressures can be much greater.
For 57-year-old John Jemison of Orono, a professor with the University of Maine Cooperative Extension, the challenge is finding enough time to spend with his recently widowed father, Jack. A resident of the Phillip Strickland House assisted living facility in Bangor, Jack Jemison, 94, struggles with memory loss and the disorienting fallout of a couple of big, recent changes: the transition to Maine in 2014 from his lifelong home in Memphis, Tennessee, and the death of his dear wife, Jan, earlier this year.
“I want to spend as much time as I can with my dad now,” Jemison said. “But I just can’t always be there with him.”
As it is, he visits two or three times each week and takes his dad home with him most Sundays. But with Christmas approaching, he said, time has become a scarce commodity as he and his wife, Shelley, a full-time speech and language therapist, prepare for the holiday. At the same time, he said, his father is feeling needier.
“He sees the decorations and the preparations [at the facility], and he knows it’s Christmas,” Jemison said. “He says things like, ‘This is a time of year when I really want to see you.’ He’s not trying to guilt me; he’s always so grateful when I come. But it’s just not enough.
“There are all these little life stresses you have to deal with,” Jemison said. “It’s the ‘How can I do everything and still spend time with my dad’ stress. It’s always there.”
Jemison’s situation isn’t ideal, but at least his elderly father is safe and looked after 24 hours a day. For many other families, including those caring for loved ones at home as well as those who have opted for institutional care, the demands of the holidays add a more significant burden to an already difficult arrangement.
“For family caregivers, the holidays can trigger deep feelings of shame and guilt,” Bangor geriatric psychiatrist Clifford Singer said.
Not only is it difficult to keep up with traditional activities and material expectations of the season, but difficult family dynamics often come into sharp and uncomfortable focus.
For example, Singer said, family members who come together for the holiday may be critical of how a loved one is being cared for, whether it’s at home or in an institutional setting. They may underestimate the strain on the caregiver of having holiday house guests or have unrealistic notions of how to include a frail family member in the festivities. These scenarios and many others, Singer said, have the potential to spoil the holiday and drive families apart, just when they most need to come together.
But there are strategies to help caregivers navigate these shoals. Chief among them, according to Josephine Cirrinone, a social worker and family caregiver specialist at Eastern Area Agency on Aging in Bangor, are to simplify your holiday plans and advocate for your own needs.
Simplify, delegate, communicate
At EAAA, Cirrinone runs a weekly family caregiver support group. Recently, she said, there has been a lot of anxiety expressed in the meetings about the holidays.
“The word that stand out is ‘guilt,’” Cirrinone said. “People ask, ‘Why can’t I do this anymore? I used to be the hostess-with-the-mostest.’”
But now, she said, these caregivers are living with the reality of a loved one who tires easily, who requires constant supervision, who may be incontinent, whose medications must be taken on a strict schedule, who needs help with eating and other activities.
“They’re saying they are no longer in a position to host the holidays,” Cirrinone said of the members of her support group.
But many caregivers are reluctant to admit they’re ready for a change or ask for help.
“I tell them, ‘Do not feel you still have to be the one who organizes everything and makes sure it’s OK,’” Cirrinone said. “The family needs to know what your limitations are.”
Then, she said, families can look for compromises that will lead to a better experience. For example, family members can help with cleaning and decorating the caregiver’s home. They can provide respite care so the caregiver can get out and shop for gifts. Online shopping with an older relative can be a great way for a young family member to help out, Cirrinone said, and there is still time for most online purchases to be delivered before the holidays.
For meals, a potluck holiday dinner may make more sense this year than the more formal, traditional meals of the past. Alternatively, Cirrinone said, many local grocery stores and family restaurants offer precooked holiday meals.
“People can be very thick-headed and stubborn about their traditions,” Cirrinone said. “But things don’t always after to be the same year after year.”
In many families, an elderly loved one is cared for in a nursing home or other facility. While it may be an appealing notion to bring that person home for the holiday, it’s not always the best idea, Cirrinone said. Especially for those who are very frail or living with dementia, the disruption in the daily routine can be upsetting and disorienting. And the unaccustomed stimulation of music, games and the activity of pets and young children can be nerve-wracking.
Instead, Cirrinone suggests families consider having a relaxed visit at the facility, in small groups instead of all at once, or ask about using a conference room or other space for a family party. If you’re intent on bringing your family member home for the day, she said, consider hiring a private aide to help with meals, medications, bathroom breaks and other needs.
Deeper discord
Cirrinone and Singer said the holidays can also devolve quickly into serious family discord about the caregiving situation itself. In particular, Singer said, people who live at a distance may be shocked at the deterioration of the person who is being cared for, the evident stress of the caregiver, the condition of the home or other factors.
“Family members may have had no idea how bad it’s gotten or what a burden it’s become for the caregiver,” he said. “Sometimes the person who has been the most insistent on doing ‘everything’ to care for Mom is the one who lives the farthest away and understands the least.”
Conversely, the caregiver and the person who is being cared for may perk up at the change in activity and energy around the holiday and look pretty good, he said.
“To the person who is visiting from afar, the situation may look far better than it really is,” Singer said.
Misunderstandings and conflicting perceptions can trigger anger, defensiveness and resentment, Cirrinone said — discord that can last long past the holidays.
While it’s important to clear the air and try to establish realistic solutions for aging parents or other family members, the busy and emotionally loaded holidays may not be the best time to wade into such deep waters, she said.
On the other hand, if the opportunity presents itself, families should take advantage of being together to talk openly about their concerns, Singer said, including weighty questions about institutional care, end-of-life choices and estate planning.
Wrapping up the holiday on a positive note is important for everyone. “The emotional memory far outlasts the literal memory,” Singer said. “Even for someone with dementia, the emotions generated by a good visit with family last a long time.”
