November is National Family Caregivers Month, which puts the focus on the more than 44 million men and women who devote an average of 20 hours per week caring for a family member, spouse or other loved one who is unable to care for themselves.
Within each caregiving arrangement, the extent and type of care required will likely evolve, as will the personal needs of the primary caregiver. Half of caregivers receive no outside assistance at all, but not always because it’s not offered and certainly not because it’s not available.
Caregivers as a group are notoriously reluctant to ask for assistance, so here are a few ways to help a caregiver and lend the support they may not even realize they need and deserve:
Some of the easiest ways for you to help can mean the most to an exhausted caregiver, whether you do them yourself or pay someone to have them done. These can include cleaning the bathroom or kitchen, dog-walking, grocery shopping or preparing meals (fresh or freezable), mowing the lawn and staying with the person receiving care a couple of times a month so the caregiver can have the day off.
Offer to participate in doctor visits, not just to do the driving but also to help advocate on the patient’s behalf: sometimes an extra pair of ears can make a big difference.
If you or friends and family cannot step in and take over (for an afternoon, day or longer), suggest options for respite care, which can include in-home visits from professional health-care aides, adult daycare centers and programs or short-term nursing homes. Many senior living communities offer short stays so caregivers can get away from their responsibilities for longer than just a few hours. Medicare has a respite care benefit that allows the person receiving care to be placed in a facility for up to five days, providing the caregiver a break from their responsibilities.
Rather than send an email message, call or stop by. If you find yourself beginning a sentence to a caregiver with the words: “Let me know…,” stop and start again using the words “What can I do…?” Try asking, “What can I do right this minute to improve your day?”
Help the caregiver make an exhaustive list of everything they do, and prioritize what he or she a). really needs help with and b). would like to have help with. Prioritizing the list can help both you and the caregiver recognize the extent of their responsibilities and focus on the most helpful action items.
Few are able to plan ahead for the day they become a caregiver; it’s an important job that generally comes with no formal training, a situation that can lead to ongoing anxiety. An in-person or online course on elder care can help new and seasoned caregivers alike with everything from safe wheelchair transfers to communication with someone suffering from cognitive impairment. Volunteer to take the class with them, so you are better prepared to step in and help out when the caregiver needs a break.
Many primary caregivers sacrifice both their money and time caring for a loved one. Funds allowing, the caregiver can sometimes be paid through the estate – but not always. If you and your siblings are allowed to maintain your status quo because another family member has stepped up, then find a way to help compensate them for their time.
Structured Family Caregiving programs (available in a growing number of states) and Cash & Counseling/Consumer Directed Care programs in many instances provide paid compensation for caregivers of people in financial need. Amounts and eligibility can vary greatly from state to state and according to program type, but even small benefits can make a big difference to an otherwise unpaid caregiver.
Crowdfunding campaigns, such as GiveForward, GoFundMe and YouCaring, can be a great source of financial relief. Often, they are set up by a friend or family member to help cover medical expenses, but they can also benefit a caregiver.
It can be difficult to remind caregivers that they need to look after themselves first, but find a way to be insistent about attention to self care: it’s far too easy to place focus solely on the one receiving care. This is a good time to enlist the support of others, as long as you can keep the caregiver from feeling “ganged up on.” If there are concerns about the caregiver’s physical or psychological health, don’t ignore the warning signs: take action before it’s too late.
Point out articles, services and websites that promote self care, and if you suspect a substance-abuse problem, advocate for immediate treatment. At a minimum, encourage the caregiver to keep current with immunizations and get plenty of exercise and sleep. If he or she isn’t healthy, it’s difficult to provide the best possible care for someone else.
Be specific. Invite them out for coffee, a meal or to go shopping. Say things like, “next Saturday some of us are getting together for lunch, and I’ll arrange care for the afternoon so you can join us.” If your invitations are met with resistance, wait awhile and ask again. Even if they say “thanks, no” nine times in a row, on the tenth time they might say yes, so don’t give up. Caregivers need to know they’re wanted, included and not left behind by those with freer social calendars.
Say “I’m here to listen, anytime you want to just talk.” Sometimes it can help immeasurably to be able to vent. Caregivers often feel very alone and many suffer from depression: a willing ear is often welcome. If you can make them laugh, even better.
Look for changes in the caregiver’s attitude and appearance. Were they once socially active but have started to become withdrawn? Do you hear from them less often, either via email, phone or social media? Have they become careless about their appearance? Have they given up on regular activities? If you notice any of these things, it’s time to take more than a passing interest in their well-being.
Caregivers often find themselves facing a growing mountain of paperwork because caregiving leaves little time for anything else. Volunteer to sort papers for or with them. Ask for advice from friends who have accounting or legal experience. Make sure advance directives or Power of Attorney are in place. Help the caregiver make a budget and don’t be reticent to ask the tough questions regarding finances.
Even though senior-focused services are plentiful and on the increase, burned-out caregivers may not have the energy or time to explore support options available to them. If they are not tech savvy, many local and national resources will be harder to access. A great way to lend a hand is to do some of the legwork for them and determine the best sources for assistance.
First, learn about the condition(s) of the person they’re caring for and then start weeding through information online. Look for agencies on aging, disease-specific websites, local senior centers, medical providers and social services. Faith-based communities, Facebook groups and forums are excellent sources of information and support, as are Eldercare.gov, the Caregiver Resources page at rosalynncarter.org and the Family Caregiver Navigator at Family Caregiver Alliance. Many benefits and services are available regardless of financial need.
The caregiver may not be aware of government-funded, “Managed Care at Home” programs such as PACE (Programs of All-Inclusive Care for the Elderly) and/or LIFE (Living Independence for the Elderly), currently available in 31 states. There are drawbacks, but these options are worth researching.
Tip: Family Caregiver Alliance offers an online service called FCA CareJourney™, which helps caregivers navigate complex care-related responsibilities that are targeted to their needs and those of the person for whom they’re caring. Users create a membership and complete a questionnaire, and in addition to tailored information will have access to online Caregiver Peer Support, among other local, state, and national resources.
If you offer help on a weekly or monthly basis, be consistent. Sometimes circumstances will not allow you to make a regular commitment to supporting a caregiver, but try to check in regularly.
Volunteer to be the caregiver’s backup and “in case of emergency” person. Be the keeper of essential information should something happen to the caregiver that renders them unable to provide care. Have doctor contact and insurance information, spare keys and swap phone numbers with a neighbor. Know where all important papers and documents are kept.
Finally, frequently remind the caregiver that help is no more than a phone call away. Make sure he or she knows how valued they are.
Don’t criticize and don’t judge, particularly if you’re a sibling or other family member of a caregiver looking after a parent or spouse. Don’t complain about the small stuff: remember, it’s possible they were the only applicant for the job.