Nearly 3 in 10 adults in Kansas care for a loved one with complex medical conditions or disabilities. For this edition of “In the Mix,” Carla Eckels sat down with caregiving expert Rhonda Custard to discuss the challenges family caregivers face, the importance of support, and the resources available to help those caring for others.
What inspired you to become involved in caregiving?
At the age of 10, I assisted my mother after she had surgery, and I was kind of dropped into caregiving. I had my name called constantly for incidentals and accidentals, which led me to the journey I'm on now.
Other relatives, including second- and third-generation family members, would come to stay with us. I would help them with bathing and dressing, putting lotion on their hands and feet, and just loving on them.
It's always been a passion of mine to care for those who came before us. I'm truly about giving back to those who provided me with the opportunities I have today. Yes, it's my passion.
What are the biggest challenges family caregivers face?
Support. If you're in a family of five siblings, usually it's one person who is nominated or dropped into the caregiving position. Whether it's caring for one parent, both parents or an older sibling, it's usually just one person.
That individual solicits help from siblings, and the responses are, "Okay, I'll help. I'll be by. I'll fix something. I'll come over and sit for a couple of hours."
They get a myriad of different promises, but those things are rarely executed. We have a tendency to be good for about two weeks. We don't even make it to 21 days. We're good for two weeks, and then we fall off.
Support is needed consistently throughout the caregiving journey. It doesn't necessarily end when the person being cared for passes away, either. That caregiver's whole life may have revolved around caring for someone else. When that loved one passes, the caregiver may wonder, "What do I do with that time? What is my name? How do I identify myself in society when I've spent the majority of my life caring for someone else?"
That's a very different experience.
What advice would you give someone caring for an aging parent?
Patience, especially if that parent is experiencing Alzheimer's.
When you look at your parent and they're no longer the parent you knew growing up, it can be difficult. They may be acting in ways that remind you of a 13-year-old, a five-year-old, or even a two-year-old.
You're looking at an adult and thinking, "But you're an adult. You already know how to brush your teeth. You know how to go to the bathroom. You know how to do these things."
Yet internally, their mind may not be able to put together everything you're saying.
We have to be more methodical when giving instructions, and sometimes even that doesn't work. Patience is really the biggest key.
And give yourself grace. This is on-the-job learning. Give yourself grace.
How can caregivers avoid feeling overwhelmed or burned out?
It goes back to support and seeking out resources. Share with people that you're exhausted. Tell them you really need help.
You're not Superman or Superwoman. Exhaustion is real, and most people don't realize what caregivers go through.
The key is that we have to be vocal. We have to be assertive in asking for help. If we need to go to the doctor, we need to find someone who can sit with our loved one so we can address our own medical needs.
We have to take care of ourselves, too.
What resources are available to help family caregivers?
Within the Wichita community, we have in-home services, respite care, and adult day care services.
Central Plains Area Agency on Aging offers several programs. The First Step program allows someone recently discharged from a hospital to receive in-home support, which also helps the family caregiver.
We also have the Family Caregiver Support Program, which helps caregivers obtain in-home services so they can attend to their own medical needs and address personal challenges.
There is also a respite program available in Butler, Harvey and Sedgwick counties.
Another resource is the Senior Care Act program, which provides long-term in-home services. It addresses personal care needs, including bathing, dressing, walking and mobility assistance. It also offers homemaker services such as meal preparation, laundry, light housekeeping and shopping.
Kansas also funds a special respite program for people with Alzheimer's, dementia and related dementias. The program provides an allotment of up to $1,000 per care recipient, which can cover as much as 50 hours of respite care annually.
Some programs also provide assistance with incontinence supplies and potentially lawn care.
Respite is really about giving the family caregiver a break. It provides companionship for the person receiving care while the caregiver can attend medical appointments, take a long bath, take a nap, go to the park or simply enjoy the outdoors.
It's about having peace of mind, knowing someone is there with your loved one.
The Family Caregiver Support Program and the Older Americans Act programs, which fund First Step and Family Caregiver Support, have no required cost to participants, although donations are accepted. The Senior Care Act is state-funded and operates on a sliding fee scale.
How can families prepare for the responsibilities of caregiving?
Eyes wide open. Don't dismiss anything you notice.
Whether an individual is becoming frail or has experienced several falls, pay attention. Check their medications. Has their weight changed? Is the medication still appropriate for their needs? Is their vision okay? Are they keeping up with doctor and eye appointments?
Home safety is also important. Make sure hallways and other areas are well-lit. Consider nightlights, grab bars in the bathroom and other places where someone may need support. Get rid of throw rugs that could cause falls.
One thing I've noticed is that older adults sometimes won't tell their children they've fallen because they're afraid they'll be put into a long-term care facility.
I've tried to encourage families to keep communication open. Older adults should feel comfortable saying, "I fell, and I know why. I got up too quickly, felt dizzy, and kept moving anyway."
If we empower family members who are aging to be assertive in their conversations, the caregiving journey becomes much easier.
We have to communicate. Make sure our loved ones know that we're trying to meet their needs while also taking care of ourselves. At some point, we may be on that same journey.
What are some signs that an older adult may need extra care?
Frailty, vision changes, forgetfulness, stumbling and shuffling of the feet are all things to watch for.
Pay attention to changes in walking patterns and sleep schedules, too. If someone is staying up all night when that's not their normal routine, something may be going on that needs to be checked.
A urinary tract infection, for example, can cause a variety of symptoms in older adults, including confusion and hallucinations. Sometimes families may think something else is happening when the person actually needs medical attention for an infection.
It's important not to dismiss changes in behavior or physical condition. If something seems different, have it evaluated.
How have you seen the sandwiched generation work effectively?
There are many caregivers who are sandwiched between generations. They have parents living with them while raising their own children, whether they're preteens, teenagers or college students. It seems like they're constantly running in every direction and can't catch a break.
Sometimes the solution is bridging the gap between children and grandparents.
If grandparents need something, involve the children. Help continue that legacy by teaching them how to care for and support older family members. Don't separate the generations. Bring everybody together.
Have family meals and then step away. Sometimes those conversations and interactions give the caregiver a much-needed break.
Technology is another great way to connect. Let the grandchildren help grandparents learn how to use their devices. You'd be surprised how quickly they connect on that level.
It reminds me of a little two-year-old whose grandfather had Alzheimer's. His wife couldn't get him to eat. When that little girl came over, her job was to get Grandpa to eat.
She would climb into his lap with her plate, and he would have his plate. She'd take a bite of her sandwich, then hold Grandpa's sandwich up and say, "Eat, Grandpa, eat!"
He would take a bite, and they'd sit there smiling. She'd eat a grape, pick one up and put it in his mouth.
She would say, "Good job, Grandpa! You're making a happy plate!"
Those are the wins. We have to celebrate the little wins and not give up.
When we're exhausted, we can lean on those little people who see nothing but unconditional love. They see someone who needs a little support, and they step in to help. It's awesome!
What is the most important thing you want caregivers to know?
Give yourself grace. Your shoes are unique to your situation. Nobody has been in your shoes.
There are many caregivers out there who have walked their own journeys. All anyone can do is offer suggestions based on their experiences.
You're going to get angry. You're going to get fed up. That's okay. It's part of it. You're tired. You're exhausted. Give yourself grace.
Think about the airplane and the oxygen mask. They don't tell you to put the oxygen mask on the other person first. They tell you to put it on yourself because if you don't have it, you can't help the other person.
Be quick to recognize that you're going to need grace. Surround yourself with positive people who support and encourage you. You need empowerment and affirmation.
Grace, affirmation and positive people are the keys to getting through this journey.
Rhonda Custard is a Caregiver Coordinator for Central Plains Area Agency on Aging and also works with the Sedgwick County Department of Aging and Disability. She will discuss available resources at the AARP Caregiving Summit on Saturday, November 14, at the Carl Brewer Center at McAdam’s Park in Wichita.
