October 16, 2021

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travel, Always a step ahead

Hospice caregivers face struggle to maintain mental health as pandemic wears on

Caring for her wife during the pandemic has been difficult for Cheryl Knapp, as friends and family aren’t able to visit and lend a hand as often as they once could.

The Escondido resident started dating Sue Whitfield, now 80, soon after they met at a Christmas party in 1983, while Knapp was using a leg brace and holiday-decorated crutches to recover from a mountaineering accident. Whitfield told Knapp that anyone who could make their crutches look festive must have a good sense of humor, a trait the pair mutually shared.

“She also, in jest, asked me to dance, which of course I couldn’t do, so I knew she had a sense of humor,” Knapp said.

Always the outdoor enthusiast, Knapp taught her future wife how to canoe around Fiesta Island on one of their early dates, after which Whitfield — who wasn’t as enthused about outdoor adventures — told their mutual friend she thought Knapp was trying to kill her.

Despite their difference in opinions about wilderness activities, the couple has happily shared many camping and hiking adventures over the years.

But over the past seven years, Knapp has acted in multiple instances as a family caregiver for Whitfield, who was diagnosed with a blood cancer called Polycythemia vera in 2013, followed by a benign brain tumor, lung cancer, two strokes, and dementia. Last May, a cancerous tumor was found on Whitfield’s left femur, and by October, it had doubled in size.

The level of care she needs has grown over the past year, after she experienced radiation treatment and transitioned into a wheelchair.

“Once she was in the wheelchair, that complicated things a lot,” Knapp said. “Her dementia has progressed significantly, so it made the care much more difficult.”

Knapp squeezes in time to practice playing her bassoon between caring for Whitfield.

Knapp squeezes in time to practice playing her bassoon between caring for Whitfield.

(Nelvin C. Cepeda / The San Diego Union-Tribune)

On top of the normal difficulties of caring for someone with multiple health conditions, the burden for Knapp and other family caregivers has been exacerbated by the COVID-19 pandemic, Lupita Gaona-White said. She is a licensed clinical social worker who has worked at The Elizabeth Hospice for nearly 17 years.

“A lot of people receive assistance from friends and from family, and due to the pandemic, they can’t allow so many people coming in,” Gaona-White said. “So as a result, they’ve been having caregiver burnout.”

In some cases, increased isolation from social distancing efforts may lead to a more rapid decline in health.

This can be especially true in instances where loved ones and hospice volunteers are unable to visit someone in long-term care facilities, which have spent most of the past year closed to visitors to prevent the spread of the novel coronavirus.

“Human interaction is so vital to our survival, and when you take that away, you see a decline in mental health,” Gaona-White said. “Even people with dementia who don’t understand what is happening, just the lack of that human interaction, it affects their health and their well-being.”

Sue Whitfield's eyes light up when the conversation changes to their past vacation trips to Las Vegas with Cheryl Knapp.

At home in Escondido, Sue Whitfield lights up in conversation about past vacation trips to Las Vegas with wife and primary caregiver Cheryl Knapp, who understands the health benefits of human contact.

(Nelvin C. Cepeda / The San Diego Union-Tribune)

Cheryl Knapp holds the hand of her wife, Sue Whitfield.

Cheryl Knapp holds the hand of her wife, Sue Whitfield. Knapp is the primary caregiver for Whitfield, who has advanced dementia.

(Nelvin C. Cepeda / The San Diego Union-Tribune)

Although Knapp can’t point to an explanation for the increased cognitive decline she has observed in her wife over the past year, she has a strong inkling that it is largely connected with the isolation and the inability to travel.

“I’m not sure if her cognitive decline has gotten worse due to the isolation or it would have already been getting worse,” Knapp said. “At the beginning part, we had nice weather and we’ve got a nice patio here, we would have friends over to sit socially distanced outside.”

“I think that maybe her dementia might have gotten worse sooner if we hadn’t at least had a chance to visit with friends,” she said.

Some of the challenges caregivers face in the current climate can be made easier by support from The Elizabeth Hospice, a nonprofit end-of-life care organization.

Sue Whitfield enjoys a yogurt cup and applesauce for lunch.

Sue Whitfield enjoys a yogurt cup and applesauce for lunch.

(Nelvin C. Cepeda / The San Diego Union-Tribune)

Hospice is a form of care for those living with terminal, incurable illnesses, according to the National Institute on Aging. Through hospice care, patients receive medical treatment at home or at a medical facility with the goal of making them more comfortable in lieu of curing their condition.

To receive hospice care, a patient’s doctor determines that the illness is terminal within six months and that further efforts to cure it won’t feasibly be successful. Based on this prognosis, a physician will make a recommendation to a hospice organization.

During this time, when caregivers and the people they tend to are more isolated than usual, organizations like The Elizabeth Hospice help families providing end-of-life care to cope with increased stress and anxiety.

While working with clients during the pandemic, Gaona-White has been teaching caregivers mindfulness and relaxation techniques, which can be as simple as taking a short walk in the yard during the day or setting aside time to view the moon and stars at night.

Knapp enjoys a brief conversation with Whitfield at home in Escondido.

Knapp enjoys a brief conversation with Whitfield at home in Escondido.

(Nelvin C. Cepeda / The San Diego Union-Tribune)

“Sometimes we forget — because we’re so busy caregiving for their loved ones — that just little things like that, as simple as stepping out and just looking at the moon or breathing some fresh air, can be a little helpful,” she said.

Below are other ways to manage caregiver burnout at home while tending to a loved one’s physical or mental health needs during the pandemic.

Practice yoga using online apps, YouTube videos

Although gyms and yoga studios remain closed for the foreseeable future under the state’s stay-at-home order, there is still the option to improve one’s physical and mental health by practicing yoga at home.

Yoga is a practice, based on Indian philosophy, that acts as either a spiritual practice or a way to promote physical and mental well-being, according to the National Center for Complementary and Integrative Health. Research shows that it can improve overall wellness by reducing stress and improving sleep and balance, as well as mental and emotional health. It can also be used to reduce lower back and neck pain, menopause symptoms and anxiety.

Similarly, research suggests that meditation may also help to reduce anxiety, depression, blood pressure, symptoms of irritable bowel syndrome and insomnia, according to the NCCIH.

Peloton offers a variety of exercise and wellness classes such as yoga and meditation through its app, which is free for the first two months. After the trial ends, a digital subscription costs $12.99 per month — less than the price of most gym or studio memberships.

There are also a variety of free yoga classes and meditation exercises available on YouTube for wellness practitioners of all levels, like those from the accounts Yoga With Adriene, MadFit and Goodful.

Learn meditation tactics with BrainTap

Patrick Porter began using meditation and wellness as a way to cope with stress as a child struggling with school, an experience that led him to later launch BrainTap Technologies.

BrainTap offers six packages of meditation tracks that aim to help people strive for optimal health, gain better sleep hygiene, decrease stress, manage weight wellness, and overcome worrisome feelings through brainwave entrainment technology. There is also a program made specifically for children, which aims to help set and reach educational goals, build optimism and develop honesty as a habit.

In total, there are 400 guided audio tracks that can help people take charge of their mental wellness. There is also an optional headphone set that incorporates light and vibrations with the therapeutic sounds in the program.

“Even though it seems almost nonsensical that using lights on a vibration could do this, the brain loves patterns,” Porter said

The programs start at $9.99 per month for one bundle, or $29.99 a month for a collection of six packages.

Join a virtual support group

While going through a difficult situation — like working as an unpaid, family caregiver — one option to cope with stress is to speak with others going through similar situations during a support group meeting.

Support groups can help caregivers to feel less lonely, gain a sense of empowerment and control, and reduce feelings of isolation and depression, according to Daily Caring, a website devoted to caregiving issues. Attending meetings can also help caregivers learn tactics that will improve the quality of life for their loved ones and can help keep them at home longer.

San Diego is home to a variety of nonprofits that offer free support groups for caregivers, many of which are dedicated to caring for those with specific health conditions, such as Alzheimer’s disease, Parkinson’s disease, epilepsy and dementia.

Due to the ongoing pandemic, many organizations have shifted their support group meetings to a virtual format to keep the community safe from the spreading virus, including the Parkinson’s Association of San Diego, Alzheimer’s San Diego, and the Alzheimer’s Association of San Diego and Imperial counties.

For a map of caregiving support resources available throughout San Diego County, visit CaregiverSD.com.

Take time for self-care

Whether its taking a bath, going for a walk, painting their nails, drinking water or sipping on wine at the end of the day, the practice of self-care can mean different things to different people.

Regardless of what method works best for you, self-care is an important step to reduce stress and achieve overall mental wellness, said Shanette Smith, senior specialist and licensed family and marriage therapist at Sharp Mesa Vista Hospital and Sharp McDonald Center.

Ultimately with self-care, Smith advises that people treat themselves as they would treat their best friend.

“If you were talking to a friend or someone that you love, what would you say to them?” she said. “What words of encouragement would you bestow upon them? Turn that inward and give yourself that space to feel.”

Even if those feelings aren’t positive during the continued isolation during the pandemic, allowing yourself to experience them is an important coping mechanism.

“Even if you’ve noticed that you’ve had a 24-hour period where it’s like, ‘I’ve done nothing and I’ve just kind of felt bad and withdrawn,’ be aware of that for yourself and then say, ‘OK, today, I’m going to make an effort to do something different,’ ” Smith said.

Smith added that simple tasks such as making the bed or watering houseplants can help minimize feelings of depression and anxiety as they are tangible accomplishments for the day.

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