This is part two of the Navigating the Challenges of Family Caregiving Series (click here for the first installment). Today, I’m sharing more of my story and practical tips for building a care team. 

You’ve probably heard this before, “Good help is hard to find.” Well, that’s because it’s true, so start building your care team now. While we can absolutely lean on Jesus for our spiritual strength, in the last post I talked about how God also provides practical, qualified, dependable, hands-on caregiving help through other sources like agencies, neighbors, friends, and family. 

“Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.”–Isaiah 41:10 (ESV)

Photo by Jeanne Rouillard on Unsplash

Do you have a care team in place? Do you think you need one? Here’s why you should start building your care team now and why timing really is crucial.

Timing is everything

Depending on your situation, family caregivers can sometimes get to the point of needing that extra help pretty quickly. Situations change and can escalate quickly. That’s why building a care team early is so important. I can’t stress it enough. Don’t find yourself in an emergency before realizing you need help. 

Unfortunately, now more than ever, it seems good help IS hard to find or it’s simply not affordable for many caregivers. The Boomer generation is aging (and there are a lot of us) so demand is growing and workers aren’t compensated nearly enough, which affects supply. And don’t forget–caregiving is just plain hard work. I’m repeating myself (I say this often) because it’s true.  

Caring for someone whose needs gradually increase is super challenging. The ongoing stress and physical and emotional energy required to continually meet those needs is hard to sustain without help. And many family caregivers make the mistake of waiting too long to start looking for help. Caregiver burnout is real my friends. (Ask me how I know!)

Tip: Do your research early

Prevention truly is the best medicine. Don’t wait until you’re suffering from physical and mental burnout to get resources in place. It’s almost always easier to make decisions (and changes) to prevent catastrophe than trying to make decisions in an emergency situation.

If you’re new to caregiving, you may not realize this yet but doing it alone can be downright hazardous to your health. According to an article from the Centers for Disease Control: “Caregiving can affect the caregiver’s life in a myriad of ways including his/her ability to work, engage in social interactions and relationships, and maintain good physical and mental health.” 

Building a care team is no easy feat. It takes time and energy you won’t have if you’re already exhausted. But don’t be discouraged. Though you may have to look diligently for them, good people and helpful resources do exist. Just be aware that it’s not a one-and-done proposition because, often, our care recipients’ needs continue to grow and change so will the  resources required. I encourage you to be praying for discernment over the process. 

Get started building a care team now

If you haven’t already, think about family and friends and what they are good at. Maybe there’s a neighbor that could stay with Mom while you take a walk or get your annual check-up. Perhaps a sibling could do Dad’s laundry, order prepared meals, cut the grass, or coordinate Grandma’s prescriptions. These little things add up to more rest and better health for the primary caregiver, not to mention the recipient.

Make a plan

• Pray over the situation, that God may impress on those around that they can serve Him by helping you and your loved one
• Make a list your friends and family, including their interests, strengths, and abilities
• Think about what your care recipient likes and match those things to the names on your list. 
• Find out who is retired and may have time and desire to help
• Swallow your pride and make calls, send emails or text messages to let them know how they might be able to help
• Google local resources like home help, transportation, mail-order pharmacy, and ready-made meals. 
• Don’t forget to include help for yourself for things like respite, counseling, or a caregiver coach.

Tip: Your local Area Agency on Aging can help

What is it? They were created by federal law in 1974 and, according to the Administration for Community Living, “An area agency on aging (AAA) is a public or private nonprofit agency designated by a state to address the needs and concerns of all older persons at the regional and local levels. 

Why am I suggesting AAA? Because…

About a third of informal caregivers were age 65 or older, 51 percent were ages 45-64, and 17 percent were under age 45. (hhs.gov)

Names of local AAAs may vary, for example, our local agency in Michigan recently changed its name to AgeWays. 

There are AAAs in every state. According to various sources there are over 600 nationwide, all of which are nonprofit. So, be sure to reach out to yours.

Michelle in the garden

My experience: AgeWays was instrumental in helping me build a care team to help care for my sister, Michelle. AgeWays provided free caregiver training, one-on-one caregiver coaching, directed me to relevant resources, and even promoted self-care for me by providing access to an online weight loss program through North Carolina State University (caregiving can wreak havoc on the caregiver’s health…and weight, but that’s a story for another time). AAA isn’t only for seniors, but many caregivers are seniors. 

Key fact: 34% of caregivers are 65+ years old (Family Caregiver Alliance)

Tip: Building a care team with help from local Community Mental Health Services 

This is a local service for people in need of mental health care. This also covers individuals with special needs, like Down Syndrome, for example. This support can be invaluable for aging parents or families of adults with special needs. 

Under the umbrella of the Department of Health and Human Services (it may be different in your state), they assigned a case worker who helped us find an appropriate adult daycare program as my sister’s needs progressed, they connected me to agencies that provide in-home help and respite care, helped establish an annual plan of care with goals, monthly check-ins, maintained a steady point of contact with me and my sister, and provided information and support in choosing a nursing home when I we could no longer provide the care my sister needed at home. 

Your state may be different but, in order to get this kind of support, you may have to get your care recipient qualified for Medicaid. The effort is well worth it for the support we received. I thank God for the CMHS case worker we had during the last several years of my sister’s life. 

 Agencies don’t do the work for you, but they sure can help get you started in the right direction for your situation, saving precious time and energy. All of the above for both agencies came at no cost to me, with the exception of in-home help. Even there, Michelle’s case worker assisted in finding a caregiver extraordinaire who I believe came to us by Divine Appointment, but that’s a story for another day.

Tip: Be aware of Elder Abuse 

Me and Mom

A caregiver’s job is never done. So, even as your team grows or changes, remain diligent in overseeing the care your loved one receives.

Many who are in care, whether at home or in a nursing home, are vulnerable to abuse. Family caregivers must learn how to identify the symptoms. The  National Center on Elder Abuse provides useful information about the warning signs of  physical, emotional, financial, sexual abuse, including neglect and self-neglect. I believe this applies to special needs adults or those with mental health needs.

• Dehydration or unusual weight loss.
• Missing medication or medical assistive devices.
• Unexplained injuries or sores.
• Unsanitary living conditions or poor hygiene.
• Unattended medical needs or missed appointments.

Click here to see the full article and listed warning signs. 

Even with all of the above coming at you, as a family caregiver I’ll say it again, assembling your caregiving team is well worth the time and effort so do your best to the make time.

Have you started building a care team? If so, please leave a comment so other caregivers may benefit from your experience so far. 

More on why it’s okay to ask for help next time.

Resources:

Caregiving for Family and Friends — A Public Health Issue, Last Reviewed: August 7, 2019, Division of Population Health, National Center for Chronic Disease Prevention and Health Promotion

Caregiver Statistics: Demographics, Family Caregiver Alliance, 2016, https://www.caregiver.org/resource/caregiver-statistics-demographics/

Informal Caregiver Supply and Demographic Changes: Review of the Literature, Brenda C. Spillman, Eva H. Allen, and Melissa Favreault, Urban Institute, December 2020, Published Jan 7, 2021

HHS Administration for Community Living websites devoted to supporting Elder Justice

What is elder abuse?, Elder Justice and National Center on Elder Abuse-National Center on Elder Abuse