When you start a new job, there’s a formal onboarding process. You get an employee handbook that outlines the company’s philosophies and policies, and the HR director or your supervisor may even sit down with you to review it. You sign some documents, attend a few training sessions and participate in continuing education opportunities as they’re offered.
What if we treated caregiving like the full-time job it is and offered a formal onboarding process for familiarizing yourself with the work and how to do it?
The problem is that caregiving is so individualized, and changing all the time. Everyone comes to it for different reasons, and some are so deep in juggling care responsibilities with a full-time job, they hardly realize they’re a caregiver. That said, there are some universally practical resources from which all family caregivers can benefit.
A Support Group
You need people in your corner. And the best people to have in your corner are people who understand your situation, maybe someone with experience caring for a loved one. You need people who are in the trenches with you or have been where you are. Family and friends may not always understand what you're going through, and that’s OK. But you need a tribe, a group whom you feel safe expressing your deepest fears and difficult feelings like resentment. You need a person who will listen without judgment and only offer advice if you ask for it. You need validation and encouragement, and a support group is a great place to find all the above
There are many online options, like #CareChat on Twitter, or closed, private Facebook groups like Caregivers Connect. You can also check community listings for support groups that meet in brick-and-mortar locations on a regular basis or ask your family doctor for suggestions.
The AAA (Area Agency on Aging).
Not to be confused with the automobile agency, the Area Agency on Aging is your neighborhood “one-stop-shop” for federal, state and local caregiving resources. There’s typically one AAA for every county, but in some states, smaller, less-populated counties share an AAA office. Head to the Eldercare Locator (Eldercare.gov) to get in touch with the AAA office and other community-based resources, like Meals on Wheels or Shared Ride services, associated with your zip code. While you may not find all your caregiving answers here, AAA staff can point you in the direction of senior living communities, adult day centers, Medicare insurance counseling and more. You may even find you’re eligible for caregiving support funding through federal and state programs.
Help With Legal Documents
When it comes to establishing vital legal documents like a health care proxy, living will or DNR, you’ll want to put these in place sooner rather than later — especially if your loved one has a cognitive impairment or dementia diagnosis and may have diminished decision-making capacity over time. Elder law attorneys don’t just do estate planning: these resourceful professionals handle many issues related to health care, long-term care planning, guardianship, retirement, Social Security and Medicare/Medicaid.
A Coach or Mediator
If you’re struggling to communicate with siblings or other family members about a parent’s care needs, you may want to consider working with a mediator or unbiased third party who can offer expert advice while navigating difficult family dynamics. Even if your siblings support your role and work as a primary caregiver, you may also want to work with a geriatric care manager or similar professional to guide you through the health & senior care maze. Organizations like AARP, the American Cancer Society, the American Heart/Stroke Association, Arthritis Foundation or the Alzheimer’s Association can also provide access to valuable training, mentors or other community-based resources.
A Trusted Healthcare Partner
If you don't have an excellent primary care physician or family doctor, you should ask around for word-of-mouth recommendations and referrals. As your parent's health status changes (mainly if they have dementia or another chronic illness), the support of a good healthcare provider who understands older adults’ needs — like a geriatrician — will be invaluable.
It’s not a matter of if, but when: as a caregiver, you will need regularly scheduled breaks. Don't think of respite only when concerning a week-long vacation (although those extended breaks and getaways are a must-do). Sometimes, respite is taking 10 minutes a day to step away from caregiving. Plan a once-monthly lunch with your best friend. Take a day off from the laundry. Every other month, go for a weekend-long getaway with your spouse. However you do it, respite is a necessary resource for caregivers — not a luxury.
You can't do caregiving alone. You need respite; you need mentors, you need friends. Your loved one needs a good doctor, a pharmacist, and perhaps physical, occupational, or speech therapist. You need Mom's church friends to visit her, and your work friends to pitch in during a caregiving crisis that may call you away from the office.
When you have a caregiving village, you don’t have to brave the cold reality of caregiving alone.
Taking respite is one thing, but doing regular, consistent, daily self-care is another. And that’s because there are ways to do self-care while you’re still caregiving. You can take a nap when Dad does. You can eat more nutritious foods as you’re preparing food for your parent. You can take a 15-minute walk when your mom is getting her hair done at the salon. Whatever you can do in the midst of caregiving to take care of yourself, do so: it’s the fuel that will keep you going, and keep feelings of burnout, resentment or depression at bay.
Will you make mistakes as a caregiver? Of course. Caregivers are humans too, even if they take on superhuman roles and tasks. Will your parent or loved ones sometimes direct their anger at the situation at you? Yes, and it will hurt. But give yourself and your loved one grace: caregiving is a humbling process, and without a roadmap, you're both learning as you go. Don’t get hung up on yesterday’s hurts or hassles. It’s OK to grieve your losses and mourn your mistakes, but keep moving forward. You are doing a fantastic job, and you are doing the best you can.
Having a backup plan is vital should you get sick, need a medical procedure, or have a family emergency outside of your parents' care to which you must attend. Caregiving is unpredictable too: your father, who may be healthy, could have a fall and need to get to the hospital urgently. In the meantime, who will care for your mother? What if your mother-in-law has a stroke while you’re on vacation? While you can’t plan for every what if, having a home care provider in your village is a great way to have a backup plan, take respite, and do self-care. Consider finding a caring professional to work with your family today.
Maybe you’re ready for respite care. Ask these five questions to find out.