Getting through the holiday season while caring for a loved one can be a challenge on many levels. Holidays tend to bring up emotions, old memories, and family issues. While holidays can be a time of joy and celebration, they may also highlight losses. An adult child who cares for two parents and loses one may have to cope with their own as well as the surviving parent’s grief, which can be intensified during the holidays.
Often a medical condition causes a loved one to require full-time care, which can complicate holiday travel, if required. Navigating an airport or transferring between different modes of transportation can be difficult when caring for someone with limited mobility, incontinence, and/or the need for oxygen tanks.
Upon arrival, caregiver and receiver discover how well-equipped their host is to accommodate physical limitations. Stairs can present a huge barrier. Bowel and/or bladder incontinence—more common than many think—is one of the more challenging roadblocks to visiting people.
When travel for the care receiver is not a viable option, a family caregiver—who may feel isolated, depressed, and lonely—may opt to invite family to visit during the holiday season. This can be a double-edged sword. The caregiver, often already “maxed out,” is confronted with the stressors associated with hosting. A caregiver may frantically clean and prepare before company arrives and begin entertaining already in a state of exhaustion.
Family dynamics, the relationship between the caregiver and care receiver—whether aging spouses, an adult child caring for a parent, or other family member or close friend—the caregiver’s own health, how long it’s been since last seeing these family members, and the length of their visit all contribute to the interwoven levels of pleasure and stress experienced by the family caregiver.
In the best of circumstances—with understanding, loving family members who are regularly in touch—a caregiver will feel supported and may get a break from caregiving as family members pitch in and help. At the other end of the spectrum, a caregiver may experience criticism rather than support from relatives who provide unsolicited advice on ways to improve Mom’s or Dad’s care without contributing physically or financially towards making that happen.
Perhaps the most stressful caregiving situation at holiday time is for caregivers of loved ones who have dementia. Individuals with dementia tend to do better with regular routines. Hosting friends and relatives can be disruptive to those routines and may trigger outbursts or other upsetting behaviors. The caregiver, whose hands are already full (and who may be hosting on top of that), may be embarrassed by the behaviors. Some guests may choose not to visit again, which further exacerbated the caregiver’s isolation.
On the other hand, traveling with a person with dementia can be a nightmare. Taking an opposite-sexed parent or spouse with no visible disability into a public restroom can set a caregiver up for harassment if there are no unisex facilities available. While challenging, it may be easier to manage travel with adults with dementia who have mobility issues, than to travel with an able-bodied Alzheimer’s patient who is prone to wandering. If the caregiver has mobility issues this can be particularly tough to handle.
Must it be doom and gloom during the “most wonderful time of the year?” Not necessarily. Following are some ways to mitigate the impacts of attempting to enjoy the holidays while caregiving.
If you’re hosting
- Plan and prepare ahead of time as much as possible.
- Know your limits—how many guests can you comfortably manage?
- Simplify! It’s okay to cut a few corners. In my family, I call picking up a pie (or whatever) “my sister’s recipe,” instead of baking.
- If your baking is a point of pride for you, bake one or two of your special goodies ahead of time and freeze them so you’re not trying to do everything the night before.
- Ask for help! Ask visitors to bring food items to augment the holiday meal. If “store bought” pie is not to their liking, ask them to bake a pie or two to bring.
- Provide for your loved one’s needs. Establish a “safe space” for the person with dementia. Invite one or more trusted friends or family with whom your care receiver feels safe and comfortable. Talk to those individuals ahead of time so they are prepared for that role.
- Arrange seating to avoid awkwardness for any person who uses a wheelchair.
- Self-care! Get more sleep before the company comes. Set boundaries for yourself about how much you can do. Build rest time into the equation. If you attend a regular support group, now is NOT the time to skip it because “there’s too much to do.”
If you are traveling
- Contact the airlines, train station, etc. to clarify what accommodations are available (e.g., wheelchairs or motorized carts to help you make connections faster) and whether there will be an additional charge.
- If driving to visit family, plan regular stops. Don’t try to marathon—it’s okay to break the drive into a couple of days. Reserve a room ahead of time. Clarify and confirm ADA accommodations so you don’t find yourself in a walk-up if you are traveling with someone who does not walk.
- Communicate clearly with hosts at the other end. Do not “sugar coat” your care receiver’s condition and needs. Make a checklist of essential questions before you talk to your host (e.g., stairs, bathroom facilities, accessibility, eating assistance).
- If there will be young children where you are visiting, plan a simple activity to share with them, which your care receiver can enjoy, too. It could be a goofy little wind-up toy that makes everyone laugh, a nice storybook to read aloud to the grandchildren, or singing a song.
Whatever you’re doing, give yourself permission to take a break. Naps are allowed! Someone else can keep the care receiver company for an hour. Have fun! Enjoy your time with family and friends. Take pictures to savor later. Happy holidays!
Contributor Carole Bourree coordinates caregiver services in the Family Caregiver Support Program at Aging and Disability Services, the Area Agency on Aging for Seattle-King County.