By Yen Duong
One of the best things about the holidays is gathering with loved ones, including folks who may require care, such as grandparents or older friends.
During the holidays, family and friends may wonder how they can support people who are caring for those loved ones. Around 43.5 million Americans act as unpaid caregivers, according to the National Center on Caregiving, or about one in six adults, as North Carolina Health News has previously reported.
I learned this firsthand this fall when helping a friend’s family care for her dying father. After two strokes and an extended hospital stay, he had decided to go home for his final days. My friend, her siblings and mother took shifts sitting with him around the clock.
Upon walking in, the first thing I did was rummage through the kitchen and cook a pan of scrambled eggs for my friend’s family. Then I started cleaning up to give them a break.
Those simple actions matter, said Lisa Gwyther, a social worker with an Alzheimer’s family support program at Duke University.
“Respite is vitally important,” she said, referring to the idea that people need a break, or respite, to recharge, rest and be themselves away from the emotional and physical drain of caregiving. “If you ask families, they will say it is the most needed and least available and affordable service.”
Set expectations
Visitors can start helping before they even step in the door. While they may treasure memories of active traditions, they should prepare themselves for change and embrace flexibility, said Ashley Stevens with North Carolina Project CARE and Mecklenburg County.
Keeping lines of communication open is key, Stevens said.
“Usually families have not visited for quite some time and so they haven’t seen the progression of whatever the disease may be, and so when they come to visit, sometimes it’s a bit of a shock,” Stevens said. “For some families, it’s also a crisis moment.”
Visitors can strategize on how to adjust family traditions to include caregivers and loved ones, Stevens said.
“Maybe they’re no longer able to cook the meal, but they can taste test the meal, enjoy talking about the recipe or reminisce about when they learned how to make that meal,” Stevens said. “That might help to fill some of those values and traditions for the family but doesn’t cause difficulties for the individual with the diagnosis.”
In any case, organization and thoughtfulness can help ease the burden on caregivers, said Steven Warnock, program director of Club Nova in Carrboro which serves people with mental illness.
“Folks aren’t always very organized in how they do their stuff and it sometimes puts the burden back on to the caregiver or the person actually walking that journey,” Warnock said.
“It’s always easier to say ‘Don’t worry, I got it’ than it is to try to organize these folks who want to help but they don’t know how to do it in an organized way.”
Warnock suggests forming a “support team” around the caregiver to assign tasks to different visitors, including a “captain” in charge of communicating with the caregiver and relaying that information on to other members of the support team.
- Get an update from the caregiver before the visit, then spread that news to all visitors so the caregiver doesn’t have to call everyone.
- Explain diseases to children who may not understand why their grandparents and friends act differently and may not recognize them.
- Plan ahead–reflect on traditions and think of ways to adjust them.
Gimme a break!
Often, family members are caring for someone with memory loss. According to the Alzheimer’s Association, there are more than 16 million family members and friends across the U.S. serving as Alzheimer’s caregivers.
In North Carolina, an estimated 466,000 caregivers provide unpaid care to family members and friends living with Alzheimer’s and other dementias.
Caregivers for people with Alzheimer’s sometimes need to decode signals from their dependents, said Redia Baxter of the Western Carolina chapter of the Alzheimer’s Association. Helpful friends and family may learn these signs to help give those caregivers a respite break.
“[The Alzheimer’s Association] talks about responding to the emotional needs of the person, listening to the emotions behind the words that they’re saying,” Baxter said. “If they’re grunting and rubbing their stomach, it could be something wrong medically with that person. If they have a grimace, it could be they need to use the restroom. If they’re pacing back and forth, they may need to exercise.”
[sponsor]Adults can more easily become overwhelmed during certain times of day or find activities more difficult at those times, Stevens said.
“Be mindful of the time of day and mindful of those types of activities and help to not overwhelm them,” Stevens said. “Be aware that if they’re reacting in a way that it seems that they’re overwhelmed, adjust that so that they can feel that they’re safe–maybe take them to a different room and calm them and help them to adjust to that activity or environment.”
Giving a long-term caregiver a break so they can go grocery shopping in peace or sit at a coffee shop may be more valuable than personally running errands. A friend watched my newborn for an hour so I could go get a postnatal massage and it remains one of the greatest gifts I have ever received.
When in doubt, ask the caregiver what they need.
“Ask [the caregiver], ‘what would you let go of if you could?’” Warnock said. “What is it that is overwhelming for you but you don’t have the energy to do it all the time?”
Visitors should play to their own strengths when it comes to helping out around the house or with caregiving tasks, Warnock said. Here are some ways to help with errands:
- Feed pets, clean litter boxes, walk the dog, take the kids to a park or play with them.
- Wash dishes, load and unload dishwashers. Take out trash, recycling, bust out a vacuum, do laundry. Sweep leaves and branches, clean up outdoor spaces.
- If people are coming in from out of town, see if you can help with logistics. For example, I unwrapped some mattresses and ran to the store to get sheets for my friend’s family.
- Provide tech support for home internet and personal devices.
Feed me
Caregivers may not have time to prepare healthy meals or even sit down to eat, so their basic nutrition needs can go unmet.
“A lot of those family caregivers tend to put themselves on the back burner and forget about their own emotional and physical and mental well-being,” Stevens said.
Gwyther said my scrambled egg intervention was right on target.
“You basically allowed your friend to outsource the cooking and all the preparation that they would normally have done themselves if they didn’t have this demanding care responsibility,” Gwyther said. “That’s one way to get rest.”
In my experience, freezable, healthy food makes a great gift. When my father died, family members loaded our fridge with quiche and freezer with hundreds of egg rolls. On the other hand, be wary of overwhelming the family with easily-perishable foods at one time.
- Organize a meal train with other friends, family members, church or group members to keep the caregiver and family stocked with fresh food.
- Bananas, cut up apples or oranges, berries and other easy-to-eat-fruit can serve as welcome sources of nutrition.
- Make coffee, top off coffee mugs, collect them and wash them.
Don’t leave me alone!
Caregiving can be an exhausting and isolating situation, and social visits can help alleviate those feelings of loneliness. After my father died, my brother’s best friend sat on our couch for hours, and that act of kindness still resonates with me.
“One of the things [a community] can do to help is include [caregivers] in things they want to be included in,” Gwyther said. For example, someone “might want to continue to be able to go to church with their relative, but they want the people in the church to understand that their family member may not participate in the same way, may try and take the money out of the collection box instead of putting it in [and] may get confused.”
If visitors don’t have an hour or two for caregiving or a social outing, they can still help the primary caregiver take a few minutes to themselves, Gwyther said.
“One of the things we do with caregivers is teach them how to take short breaks when they can’t get away, like meditation, mindfulness, visualization, guided imagery–things they can teach themselves,” Gwyther said. “Even if they’re in the same home and with the person [whom they’re caring for], they can get a minute or two to themselves.”
Here are some other ideas to support caregivers’ mental and emotional health:
- Reach out and assure the caregiver that you don’t require a response. Let them know you’re thinking of them via email, text, postcard or phone call if you can’t visit in person.
- Encourage the caregiver to exercise. Take them on walks, lead them in mild yoga. My best friend walked me in laps around the hospital after I had my first baby.
- Encourage naps. Even asking gently “when’s the last time you slept?” can shake a caregiver into realizing their exhaustion.
- Research and contact local support groups for caregivers and families. Sometimes a caregiver needs to talk to someone going through the same journey.
Reassurance and love
A little bit of emotional support can go a long way for caregivers.
“[Caregivers] are very concerned about offering their relatives the best when [the patients] may not be able to acknowledge or thank the family for what they’re doing,” Gwyther said. “[Caregivers] need validation from the friends who get it, [that] ‘what you’re doing is the best you can expect from yourself and the best you can offer your wife or husband or mother.”
Even if the person being cared for has passed, continue supporting the person who did the caregiving. Months after my father died, I felt as though I had stopped and the world had unfairly moved on. A kind word of recognition eases that burden.
Finally, embrace the holidays as much as possible. My friend’s family is going on an overseas trip for the holidays rather than going through the motions of their traditional Christmas without her father.
“Really focus on the enjoyment of the holiday–not necessarily how the holiday used to work or the achievement of the holiday,” Stevens said. “But really enjoy the moment and meet your loved one exactly where they’re at.”
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A great respite resource is the NC Lifespan Respite Project, a federally funded effort to build statewide coordinated respite systems. They offer respite vouchers to family caregivers of all ages to help them cover the cost of care. For contact information, please contact the ARCH National Respite Network and Resource Center at Jkagan@archrespite.org.