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Caring In Crisis: Voices Of Those Helping Arizona's Most Vulnerable

Coverage of aging is supported in part by AARP Arizona

So many Arizonans are caring for others during the coronavirus pandemic — both professionally and personally.

KJZZ talked to some of them about how they're coping and navigating this strange new world during the coronavirus pandemic.

Learning How To Say Goodbye In A Pandemic

Saying goodbye to a loved one during the coronavirus pandemic can be difficult. Nothing about it is normal and often, families enter the room of their dying loved one completely unprepared. Now Banner Health is trying to make it less overwhelming.

Christopher Stallings is the senior director of consumer digital at Banner Health. 

"You know, the environment could be so overwhelming, and it's just because it's so different from any previous hospital visit it was kind of stealing their attention."

So Stallings and the team at Banner Health decided to do something about it.

"And so, yeah. What we did was we decided to create a video that would help families prepare for these visits."

As you enter the room be prepared that your loved one could be attached to monitors tubing and other things to support them. We will help you navigate the room so you can be near your loved one. 

The almost three minute video is a step-by-step guide that shows families what to expect, from the moment they arrive to the moment they enter their loved one’s room. And so far Stallings thinks it’s helping.

"I think I think the best tell is that we've just seen it in their faces is that they've been able to focus on their family member more and focus on saying goodbye instead of kind of, you know, the before of looking around and being overwhelmed by by the circumstances."

And this video is one way to help families know what to expect when that time comes and hopefully make it just a little bit easier. 

A Husband Finally Holds His Wife's Hand

After several months of not being able to visit loved ones in long-term care facilities, a task force made recommendations to allow visitors, but there were hiccups. So the task force regrouped and refined the recommendations. KJZZ talked to one husband who finally got to hold his wife’s hand after seven long months.

Steve Corman’s wife, Diane, has advanced dementia. Before the pandemic, Steve would visit his wife for hours each day. But when COVID-19 hit, everything shutdown. 

"You know, we've been married 35 years and had basically seen each other every day for almost all of those years."

And the only contact he had with his wife was through window visits.

"Which is, you know, what it sounds like you use are on either side of a window and communicate through a little intercom system," said Steve.

Families were finally allowed to visit in September, but there were rules.

"So I still had to stay 6 feet away from her. I couldn't give her a hug. I couldn't hold her hand. So it really wasn't much of an improvement."

Other family members had similar concerns. So the task force revised their initial recommendations. Steve is now a “designated essential visitor,” which means he can visit anytime, as long as he meets certain requirements, like a negative COVID-19 test. 

"It was a big relief, just to be able to get to see her in her own environment to see what her room was, like, for the first time in six months, to you know, be able to sit with her on a loveseat and hold hands and things like that. It was very good." 

8-Year-Old Boy Donates Books To Hospital

Watching a loved one cope with COVID-19 can be tough, especially if they’re very sick. But if you’re a kid watching a parent or grandparent go through something like that, it can profoundly affect you. One little boy who experienced just that and decided to do something to help others.

Last March, 8-year-old Anaik Sachdev’s mother, Anjleen Gumer, contracted the coronavirus. 

"And we were quarantined," she said. "I was coordinating with the kids for about like a month and a half, two months without my husband there, and I think he kind of just experienced what it was like to just be isolated away from the world completely."

Anaik couldn't go anywhere, with anyone.

"I couldn't play with my friends," he said. "All I could do was read books. And that actually got me really entertained, so I loved it."

And he thought maybe other people would love it, too. So, he created Anaik’s Loving Library. 

"A lot of my family members had this disease. And I don't want other people to feel this lonely." he said. "So I want to entertain them with books!"

Anaik has collected more than 150 books and has donated them to Valleywise Health in Phoenix. He hopes these books help cheer up patients who might also be feeling a little lonely these days.  

Anaik's Loving Library is accepting book donations. 

A Mother And Daughter Reunite Through A Window

Windows are playing an important role for many families with loved ones in skilled nursing facilities. And it was through a window that a daughter finally got to see her 105-year-old mother, for the first time after her nursing home closed its doors to visitors due to the coronavirus. 

Victoria Babb remembers the last time she hugged her mother, Ida Banko, goodbye. It was March 6. Babb and her husband had taken her to lunch.

"And it was just like any other day and then the next day, you know, the bottom fell out of the world and I couldn't even warn her why we weren't coming back."

Babb was able to do some video calls, but her mother couldn’t really see or hear. Then she got a call from the facility. 

"I just felt such deep sadness that she doesn't even know what's going on. And now she tested positive and I can't even see her."

Banko was asymptomatic. Still, it wasn’t until mid-June when Babb finally got to visit her mother. 

"There was a full-size window behind the chapel, and it was in the shade, so they had a nice little area for my husband and I to sit. And mom was just on the other side of the glass. And she seemed really excited. And she knew we were there," said Babb. "So she seemed really happy, and I did feel some comfort seeing her even though I couldn't touch her."

Babb is one of thousands of Arizona caregivers who now have to wait and wait until the day Arizona’s COVID-19 numbers significantly decrease so she can once again hug her mom. 

Providing Caregiving Services In A Pandemic

For many paid caregivers who work in private homes, their work has become more difficult since the start of the coronavirus pandemic — from finding toilet paper for clients to coping with fears of contracting the virus. KJZZ talked to one caregiver who reflected on the myriad challenges that come with caring in crisis.

Ana Valdiviezo is a caregiver with Valley of Sun Homecare. She's been providing care to older adults for about 16 years. Valdiviezo does a little bit of everything. Really, whatever her clients need to do.

"Light housekeeping, companionship, maybe doing some shopping if they need that done and just little odds and ends around the house that maybe they can no longer do for themselves," she said.

But caregiving in this new normal is taking its toll.

"Yeah, I have quite a few friends that are caregivers and across the board," she said. "They're all exhausted, like, emotionally drained from just going through this and having the fear of contracting COVID are having their clients contract it."

And if that happens, there are consequences.

"Then they're probably going to have to be self quarantine for 14 days, and they're worried about their finances and in addition to their health."

Which exacerbates an already stressful situation. Valdiviezo still finds her work very rewarding, but she also has to take time to recharge — now, more than ever — so she can continue to be present for her clients who depend on her for so much.

A Mother Is Guiding Her Daughter With A Disability

Living through the coronavirus pandemic with an intellectual or developmental disability can be confusing, frustrating, even heartbreaking. Courtney Burnett is a mother who is helping her daughter understand why her world has turned upside down.

"So my parents can help me be safe. I can wash my hands to keep me healthy."

Burnett is reading from a book she created about the coronavirus. She made it for her 16-year-old daughter, Hannah. Hannah has an intellectual disability and cerebral palsy.

"I can talk about my feelings and then there's a couple Cute little feelings icon," she said. "And then I can tell my parents if I'm feeling sick, and I can let them know."

Hannah is nonverbal, so her mother uses visual supports like that icon she talked about to help Hannah understand her world, which is kind of topsy-turvy right now.

"I think the hardest part is trying to create the stability that my daughter is used to."

And that’s where the book comes in, she said. It’s a jumping off point to talk about Hannah’s frustrations, fears and hopes. 

How A Family Caregiver Faces Challenges In A Pandemic

Caring for a loved one with dementia in this pandemic can create some interesting challenges. KJZZ talked to one family caregiver who is navigating the ups and downs while caring in a crisis.

When asked to describe herself, Jan Riggs said this: "I would say, I’m a stay-at-home mom again."

Riggs isn’t talking about her own children or even her grandchildren. She’s talking about her husband who has lewy body dementia. LIke most Arizonans, Riggs and her husband have been staying home during the pandemic.

While she tries to keep her husband engaged, she can’t always keep him away from the TV

"Because he has no short term memory he doesn’t remember the coronavirus."

So, it’s news to him — every time. And it can be upsetting.

"Yeah, that’s why I would like him to watch old westerns or Dick Van Dyke or something," she said with a laugh. 

Riggs is one of thousands of family caregivers who, because of the coronavirus, can no longer rely on supports like adult day care for respite.

Dementia Coach Talks About Working With Arizona Clients During A Pandemic

The coronavirus has changed the way many of us do business. The same goes for those who support people living with dementia and their caregivers. Yet despite these strange times we live in, the work goes on – albeit from afar. 

Juliana Crouch is a health coach for Dementia Care Partners, a program through Banner Sun Health in Sun City. It’s a job that requires her to spend time with families to assess their needs. But with the coronavirus, she’s using the phone to connect — which means, she can't see them anymore.

"I can't see what they see. I can't see their environment anymore. And so I'm having to learn how to walk either the family caregiver or the whole family through situations," said Crouch.

And many of her clients are in their 70s and 80s, and some of them are not using smartphones or computers. Which means, Crouch relies on tone of voice to gauge what’s going on.

"So if I hear, you know, that little crackling in the voice, and I can kind of tell that they're about on the brink of a breakdown or they're about to cry."

She then gently walks that person through whatever it is that’s upsetting them.

"A lot of the times it's isolation, unfortunately," she said. "Because they had these resources in place, they worked really hard to get them in place with the adult day center, convincing their person to go, or convincing their person that the in-home respite care provider was a good person, and on their side. And now a lot of families have seen that all taken away from their from them."

While her work gives her a sense of purpose, it’s hard — especially now. And some days, she feels like she’s just not doing enough — a feeling many of us can relate to.

Area Agency On Aging Gets Record Number Of Calls From Arizona Seniors

Since mid-March, the Phoenix-based Area Agency on Aging has received a record number of calls to its Senior HELP LINE.

Who’s answering these calls? And what’s happening on the other end of the line?

"Hi. Good morning. This is Cynthia. I'm with the Area Agency on Aging, the Senior HELP LINE. You left a message about a lady you had some concerns about."

Cynthia Salk is the information and referral specialist at Area Agency on Aging.

"In a typical year, we get maybe about 40,000 calls per year per year at the Senior HELP LINE, and in the past month, we received 16,000 calls," said Salk.

And the people Salk is talking to are scared, like one 65-year-old victim of domestic violence Salk heard from recently.

"It was the first time in her life she'd ever had to go to a domestic violence shelter. And she called kind of in the middle of the night and talk to one of us that was answering the phone in the nighttime, because she was just terrified."

Or the daughter Salk talked to who can’t visit her mother in memory care because of the coronavirus.

"And she was so upset because the mother won't understand why the daughter isn't there anymore. She just won't be able to comprehend that. And the daughter was very tearful about that."

And just the other day, she talked to a 66-year-old man who is on oxygen.

"And he’s afraid to go out. And he has no one in his life but his kitty cat. And I offered to bring home-delivered meals for 60 days, and this very masculine-sounding man just burst into tears," she said. "It tore me up."

In this case, Salk was able to offer help. But sometimes, all she can do is listen. 

It's hard. I feel helpless. And that I just have to identify with their situation and tell them that I understand and, and that we're going to get through this.

Because, like Salk says, we’re in this together. 

If you or someone you know needs assistance, call the 24-hour Senior HELP LINE at 602-264-HELP.

→  Read The Latest News On The Coronavirus Disease 

KJZZ senior field correspondent Kathy Ritchie has 20 years of experience reporting and writing stories for national and local media outlets — nearly a decade of it has been spent in public media.