Ask the Expert with Sara Perry, MPA, CDP

Transcript

LifeWorx: Thank you so much for joining me today. We’ll be taking a closer look at respite care — what it is, why it matters, and how it supports families caring for someone with dementia or Alzheimer’s.

Sara Perry: Hi, I’m Sara Perry. I’m the Executive Director of Respite Care Charleston. We are a 501(c)(3) nonprofit organization in Charleston, South Carolina, and the whole reason we exist is to support families and those living with Alzheimer’s disease and other forms of dementia.

At its most basic form, respite is just a brief break from caregiving. I first learned of it in the context of foster parents — that’s one area it’s used. It’s also used for folks caring for loved ones with complex medical needs, neurodivergent individuals who need a lot of care and attention, and, in our case, for folks living with Alzheimer’s and other forms of dementia.

It can take a lot of different forms. Respite care can be short-term, like having someone come into your home to provide care. It can be community-based short-term, like the half-day memory care program we provide. It can be a little longer-term — frequently, folks we work with may need a week or two-week stay in a residential care facility so their loved one can have surgery, travel, or something similar. So respite can mean different things depending on the scenario, but the big focus is giving caregivers a little bit of time off from their 24/7 responsibilities.

LifeWorx: That also gives perspective on just how many different groups of people can benefit from this type of care. You mentioned dementia and Alzheimer’s — I’d like to talk specifically about that, because the needs there can be very different. How does respite care help families caring for someone with dementia or Alzheimer’s specifically?

Sara Perry: Our organization offers half-day memory care programs where caregivers who need time to go to a doctor’s appointment, spend time with a friend, go grocery shopping, or just take any kind of short break can do so. Those are things a lot of us take for granted, but they’re complicated when you’re caring for an adult who can’t be left alone for an extended period for their own safety, and who may be difficult to take with you for any number of reasons.

We typically have some kind of art activity, and we do reminiscing or trivia — something that’s going to trigger memories, hopefully, or at least stimulate conversation that gets folks engaged. We also build in some physical activity. Everything is catered to the folks we’re caring for, so our physical activity may not be beach volleyball — it’ll be chair volleyball, or we’ll do cornhole, or something that allows them to participate and have fun safely, in a way that’s also respectful of their status as adults.

We don’t treat them as children. We treat them as adults — as peers who just have some limitations — and we try to maximize the use of their capabilities.

LifeWorx:  I love that approach — meeting people where they are, focusing on their interests. I’ve always loved the research about music specifically —

Sara Perry: Yeah.

LifeWorx: — and how it can trigger memories and impact engagement for people living with Alzheimer’s and dementia.

Sara Perry: Yes, it is absolutely fascinating. Music tends to be something people forget last. A large part of that is because while dementia causes deterioration in certain parts of the brain — parts that affect memory, judgment, emotional regulation, attention span — music engages so many different parts of the brain that even when some areas are gone, others are still there. It continues to connect with folks. It’s amazing.

I’ve seen people in the very late stages of the disease who have very few phrases or words left — they’re essentially non-verbal — and yet a hymn from their childhood will come on, and they can sing along to every word. It’s just magical. And even when they can’t sing along, others can clap or dance, or you just see that flash in their eyes that tells you they know, that it’s connecting with them.

We actually have music therapists come in for 50% of our sessions because it’s so effective — it just brings joy.

LifeWorx: I love that. That speaks to the small moments of clarity and joy — those pockets people can still find, even living with this really terrible disease.

Your staff is familiar with some of the more challenging behaviors of dementia — wandering, agitation, sundowning. Can you talk about how the respite teams manage these types of situations, and also how care is adjusted over time as the disease progresses?

Sara Perry: Absolutely. We start thinking about those things before someone ever sets foot in our door for the program. As part of our assessment process, we try to learn about their physical needs and basic care needs, but also about who they are — things that have mattered to them, either in the distant past or even now. Who’s their favorite musician? Do they have a football team they love? What did they do for a living? That way, when they come in, we’re able to connect with them right off the bat, and that helps bring a sense of comfort.

I look at the majority of challenging behaviors — agitation, anxiety, wandering — as being caused by one of two things. First, a physical need they can’t verbalize. A lot of times, folks who wander around our facility, or seem anxious and try to go outside, just need to use the restroom. They can’t verbalize that, so we have to tune into what they might be telling us in other ways. Sometimes it’s discomfort or hunger.

But I think the majority of other cases — anxiety, sadness, even anger — come from fear: “I’m in a strange place. I don’t know what’s going on. I’m not sure when I’ll get back to my safe place, which is usually home.” So what we try to do is empathize. We don’t try to correct them and say, “No, this is where you’re supposed to be.” We try to reassure them and let them know they’re not alone, that we’re there with them.

That takes a lot of different forms. For example, we had a woman years ago who firmly believed she was 16 years old, and her parents were worried because she should have gone home after school and hadn’t. In cases like that, we’d say, “Miss Nancy, don’t worry — your family knows where you are, and they’re happy you’re here. They just want you to have a good time, and they’re going to come pick you up later.” Just hearing that — knowing she was okay.

It didn’t last long, because she had very little short-term memory, so we had to say it many times. But that knowing — “I’m okay, and there’s someone here with me” — was all it took. That comfort, that feeling of safety.

I recently shared a story about a gentleman who was very anxious, dealing with some pretty serious PTSD from serving our country in Vietnam. He was antsy and irritable — until one day we put on some music, and the second he heard those first beats of “Mustang Sally,” he pushed his chair out and started dancing. He was as happy as could be.

We learned that by getting to know him, watching how he responded to different things, and referencing what his caregiver had told us about him. That’s how we find the tools to help someone feel safe and comfortable. It’s a little bit of homework in advance, a little bit of detective work once they’re here, and a lot of patience and compassion — along with the basics of dementia care: redirecting, distracting, and trying to get someone focused on something more enjoyable and positive.

LifeWorx: One thing that overlaps a lot with LifeWorx as well, in how we onboard clients and set them up with caregivers, is the importance of understanding the entirety of the person — not just their medical needs. We often say documenting medical needs is the easiest part; the real difference in quality and continuity of care comes from getting to know the individual behind those needs.

I’d like to bring it back to caregivers for a second — how do the conversations you have with them inform the care you provide? Could we talk a bit about caregiver burnout — what are some common signs families can look out for?

Sara Perry: We facilitate a lot of support groups in our community for caregivers, and we work one-on-one with individuals caring for loved ones with dementia. So we hear those signs, and we can often recognize burnout well before the caregiver can see it themselves.

Some of the most basic questions we ask when first talking to someone: How are you sleeping as a caregiver? How is your loved one sleeping? When’s the last time you had a checkup with your doctor or dentist? What do you do to take care of yourself?

Unfortunately, so often what we hear is, “Well, I really haven’t had time,” or “I guess I need to call so-and-so,” or “I’m sleeping okay.” A lot of times, it’s what they’re not saying — what we’re hearing in their tone, or their reluctance to answer. We’re hearing that they’re not prioritizing themselves, which is understandable. So many caregivers just want to be everything to the person they love, and lose sight of the fact that they can’t be everything. No one can be everything — and you can’t be much of anything if you’re not in good shape yourself.

Lack of sleep is obviously a big indicator, though sometimes people don’t even realize they’re not getting enough. So we’ll ask about their loved one’s sleep, and they might say, “I sleep okay, but my husband’s up several times during the night.” Well — how well are you really sleeping if you know he’s up and moving around?

We’ll also ask about support systems, and when someone hems and haws, that’s often telling. If I notice someone withdrawing — not seeing people they used to see — that can mean they’re so overwhelmed they’re not even coming up for air enough to ask for help. Being able to vent now and then is an important part of support groups, and when someone can’t even find time for that, it’s a concern.

Sometimes it’s irritability, or losing touch. Sometimes it’s physical — someone looks defeated, not as well-groomed as they used to be, or that life in their eyes just isn’t there. Sometimes it’s obvious, sometimes less so.

One thing I frequently tell families who haven’t yet sought help or respite: imagine someone showing up at your house to care for your mother, and they clearly hadn’t slept or eaten well, and looked worn down and ragged. Would you want that person caring for your loved one? Of course not — you’d want someone refreshed, well-rested, truly caring for their whole self.

So we ask: if you wouldn’t hire someone like that to care for your loved one, why is it okay for you to operate that way? That sounds harsher than I actually say it — but you’d expect the best of anyone else caring for your loved one, so you should give them the best of you. And to give them the best, you have to take a break. You have to have time to care for yourself.

It goes back to “put your oxygen mask on first.” You can’t pour from an empty cup. Those are common expressions because they’re true — you can’t be the best caregiver you can be if you’re not caring for yourself first.

LifeWorx: You say it might sound a little harsh, but I think a lot of times, people need that simple but very powerful opportunity to reflect.

Sara Perry: I’d say keep using it exactly as you have been. There’s not a lot of time for self-reflection when you’re managing and juggling as many things as caregivers tend to do, so I think that’s a profound way to get someone to look inside.

We know that caregiver self-care — regular dental checkups, lunch with friends — impacts your physical health directly, including having the time to speak freely with a doctor instead of choosing your words carefully because someone’s listening who may not understand, or get frightened, or argue.

But stress also impacts your body — your blood pressure, your brain health. Lack of sleep or unmanaged stress is bad for your brain; those are risk factors for dementia, frankly. Those things affect us directly and affect the people around us — if you’re anxious and struggling, the people around you feel that, and often subconsciously reflect it.

I don’t know that we can really separate social and emotional health from mental and physical health — they’re all intertwined. You have to look at the person as a whole. There’s a lot of research showing that caregivers of loved ones with dementia often report delaying their own medical care, knowing their health is suffering, or experiencing significant emotional hardship and stress. It’s alarmingly common.

LifeWorx: You’ve been so generous with your time and expertise. Zooming out a bit — what do you believe is the most important thing families should know about this type of care?

Sara Perry: A couple of things. I very often hear this feeling of guilt — “If I ask for help, if I use respite, if I have someone come into my home to help with my loved one, it’s because I’ve let them down. I’m inadequate. I’m not a good enough caregiver.” It breaks my heart to hear that, because to me, it’s a sign you’re actually trying to be the best caregiver possible — by giving your loved one the best version of you, you’re really taking care of them more. I want people to know that.

It’s also important for folks to know that respite isn’t just about giving the caregiver time off — the individual with dementia benefits from it too. We call ourselves Respite Care Charleston because, from a caregiver’s perspective, that’s what we offer. But for the person with dementia, it’s socialization — whether that’s community-based, like our programs, or a caregiver taking them for a walk, to the park, or engaging them in other ways that give the caregiver time off but also connect with the person living with dementia. It can be a gift for them in multiple ways. It’s so far from a shortcoming.

I think of it like a new mother with a newborn, caring for someone completely dependent on her 24 hours a day. Nobody would begrudge a new mother the chance to sleep in, or have someone watch the baby so she can rest and get the self-care she needs. It’s the same principle at heart. Whether you’re trying to be the best mother, child, or spouse — when you take care of yourself, you’re enabling better care for the person you love. It’s not a shortcoming. It’s a gift. I wish more folks could understand and appreciate that.

LifeWorx: I can completely understand that, and I hope our conversation today can help shine that light for people. Sara, you’ve been so kind — thank you for taking the time to talk through all of this today. It seems like respite care can feel like a big step for families, but hearing how it supports both the caregiver and the person living with dementia and Alzheimer’s really puts things into perspective. Thank you for allowing us to spotlight the work you do, and for letting us share a little of that with our audience.

Sara Perry: My pleasure — I appreciate the chance. Hopefully, a lot of the folks hearing this are caregivers themselves, whether personal or family caregivers, and I have the greatest respect for those who give so much of themselves for those they love. Any time we at Respite Care Charleston, or other care professionals, can support that, I think it’s a wonderful thing.