FEATURE:

Balancing Career
and
Caregiving

by Donald Chun

 

Mike Friedel Photo by Steven Fox

Like many couples, Mike Friedel and his wife Sandy had big plans for the future. In August 1999, they purchased their dream retirement home in Denton, Texas just 15 miles from where Sandy’s mother, who suffers from emphysema, resided.

Over the years, they had provided her with as much assistance as they could; for example, they often sent her care packages from Hawaii and purchased a freezer for her so she could stock up on food. Their plan was to have her live with them so it would be easier for them to help her.

Everything changed in a heartbeat. On Sunday, September 5, within a month after acquiring their new home, the car Sandy was driving on a Texas highway suddenly veered into a ravine and flipped over several times before hitting a tree. Sandy staggered out of the vehicle and collapsed near it. She was evacuated by air to Harris Hospital in Fort Worth with serious head injuries.

Doctors discovered Sandy had suffered a grand mal-type seizure. In a cruel twist of fate, a caregiver became in need of one.

How to Cope Dr. Heidi Caglayan worked in California for 32 years as a licensed educational psychologist and school psychologist before she and her husband Saim moved to Kauai with their four cats and most of his artwork in May 2002 to semi-retire. Six months later, they brought Caglayan’s elderly mother from San Clemente to live with them. Caglayan quickly discovered there were no support groups for family caregivers on Kauai, so with help from the Alzheimer’s Association and the Kauai Agency on Elderly Affairs, she started one. The group has been meeting monthly at her Kilauea home for more than three years, and in February Caglayan started a second support group, which meets monthly at her office in Hanapepe. An only child, Caglayan was the primary caregiver for both of her parents. Her dad died in 1998; her mom in 2004. Today, in addition to serving as the facilitator for her support groups, she counsels caregivers and patients, sharing the 12 tips below that she says helped her manage the challenges of caregiving. This advice, she emphasizes, is not listed in any particular order as she views all as being equally important. 1. Take good care of your own physical needs; drink plenty of water, eat good food and get as much rest as possible. The good news is that as a caregiver you are probably getting plenty of exercise. 2. If you believe in prayer or meditation, remember to do it. They truly help. 3. Ask your friends to go out and do something fun with you at least once a week. Otherwise, you will drop out of their loop and they out of yours and that’s a lonely place to be. 4. Hire as much help as you can afford. Don’t try to do it all yourself. 5. Give yourself something special each month from the person you are caring for. They would love to thank you in some way for all you do, but probably can’t. 6. Join a support group to learn more and have a safe place to vent and share your honest feelings. 7. Hold hands with your loved one and look into his or her eyes when you speak. It may be the only meaningful touch you both get each day. 8. When possible, get a healing touch practitioner to help with this, especially as the end nears. 9. Use music and flowers to bring beauty to your loved one’s room, which hopefully has a view. Put as much of the medications and medical equipment out of sight for your sake and theirs. 10. Know that this time will pass and you will get your whole life back someday. You won’t be making new memories with your loved one, but you will forever have the old ones to treasure. 11. Always remember that you may live so long someone may have to do for you what you are doing for another, so use this time to realize how you would like to be treated and give that. 12. Few of us will die peacefully in our sleep without disability, so be prepared to save your loved ones from distress by planning your own long-term care. — Cheryl Chee Tsutsumi

“I thought I had lost her,” Friedel says haltingly, reliving the pain of that incident. “I had to fly all the way there from Hawaii. She had the accident about 10 o’clock in the morning and I didn’t get out of here until that night, arriving the next morning. Twenty-four hours after her accident, I didn’t know…”

His voice trails off and he pauses before continuing. “Her prognosis was questionable, you know.”

When Friedel arrived, he found Sandy in a coma and on a ventilator. “It was hard to believe she had been in an accident,” he recalls. “She wasn’t battered or beat up or anything; her nails were in perfect condition. She was like someone on a ventilator in a soap opera; their makeup is always perfect.”

Freidel stood by, helpless, as Sandy remained in a coma for nearly a month. “I think that was my darkest moment,” he says. “When you think you’re going to lose someone, to hold yourself together you have to have faith that it’s going to work out because you can’t do anything about it and the doctors are doing the best they can.”

When Sandy regained consciousness, she was transferred to Baylor Head Truman Hospital, which specializes in serious head injury cases. She stayed there for three months, then underwent rehab for two months at the Center for Nuero Skills in Irving, Texas on an outpatient basis.

Friedel exhausted his annual leave, family medical leave and sick leave during the six months he remained at his wife’s side while she struggled through various stages of recuperation. Early on, Sandy’s doctors were concerned that she would not be ambulatory and Friedel recalls feeling overwhelmed when he realized he might not only have to make their home wheelchair accessible, he might also have to arrange for 24-hour care for her.

“I was at my wit’s end,” he recalls.

Fortunately, Sandy responded to medical treatment and eventually could walk with a cane. Also, her cognitive skills improved to the point where she diddn’t require round-the-clock care, enabling them to sell their retirement home and return to Hawaii (Sandy’s mother decided to remain in Texas where friends and neighbors assist her with transportation, errands and other needs).

Caring About Statistics in the December 2004 edition of Family Caregivers: A Summary of National and Local Data show the estimated number of caregivers in Hawaii increased from 126,598 in 2000 to 192,390 in 2003. Although no new report has been released since then, Wesley Lum, a junior specialist with the University of Hawaii at Manoa’s Center on Aging, believes the number has gone up even more. “Hawaii’s population is rapidly aging,” he notes. “Families are juggling jobs and caregiving responsibilities, often having to reduce their work hours or quit entirely. Caregivers feel stressed and guilty, believing they’re not doing enough. As rewarding as it is, caregiving also is very challenging.” The Center on Aging and the state’s Executive Office on Aging have partnered on a project called The Caregivers Resource Initiative whose goal, says Lum, is “to build a support system for family caregivers — those who are taking care of older adults as well as ‘grandfamily’ caregivers (grandparents who are raising grandchildren).” The program develops the necessary tools to nurture caregiver support groups, policies and programs, and provides leadership for the Hawaii Family Caregiver Network and the Hawaii Caregiver Coalition, two important local resources for caregivers. Says Lum, “The Caregivers Resource Initiative gives caregivers a voice and builds alliances that help them. It also gives policy makers, service providers, advocates, and the various state and county agencies that are involved with elder care a common vision to support families as the primary providers of long-term care.” In the works is the Aging and Disability Resource Center, a one-stop entry into Hawaii’s long-term health-care system. Explains Lum, “Ideally, we hope to locate all the agencies concerned with long-term care in the same building, so when you go there you’ll be able to get all the information you need in one place. It’ll be like a long-term-care concierge.” The plan is to establish centers in Honolulu and Hilo on the Big Island by 2009. If securing physical structures is not feasible, Lum says, at the very least a “go-to” Web site will be created. For now, caregivers seeking assistance should contact the triple As — the Area Agencies on Aging (see below). “They can provide the information you need and connect you with the appropriate organizations in the community,” Lum says. “Caregivers are not alone although oftentimes they think they are.” Following is a list of important resources for caregivers. The public has access to all; please call the contacts provided for more information. — Donald Chun

Deciding they could manage on their own, Friedel and Sandy moved from their house in Kailua to an apartment in Makiki within walking distance of both his office at the Honolulu Municipal Building and Straub Clinic & Hospital where Sandy’s doctors are located. After a 26-year career in the Air Force and seven years as a supervisor for the city’s Department of Planning and Permitting, Friedel suddenly found himself thrust into the role of a primary caregiver with endless responsibilities.

“The very first thing I learned that was important in caregiving was security; you’ve got to make the person you care for feel safe,” says Friedel. One weekend, he recalls, he told Sandy he would be coming home late because he was going to help his former landlord in Kailua do some minor repairs. When he returned home, he found her sitting in a chair — a complete basket case.

“She was crying and didn’t know what to do or who to call,” Friedel says. “She had forgotten and was trying to sort things out. The primary job of a caregiver is to let your loved ones know they can depend on you and that they have options in case you’re not there.”

Friedel always carries his cell phone and pager. In addition, Sandy has a list of people to call in case an emergency arises and he’s not reachable. These include doctors, friends, neighbors and apartment building managers who are all aware of her medical condition.

Sandy’s thyroid gland does not function properly. She takes steroid shots to jump-start it, the by-product of which has been massive weight gain. The added weight has wreaked havoc on a knee joint that needs to be replaced, but she can’t have that surgery because lupus and vasculitis have attacked her immune system.

“We go to the doctors fairly regularly,” says Friedel. “I have to take time off so there are days I have to work late to make up for it. When you’re a caregiver, there’s a lot of juggling. I prepare the meals. I do the laundry. I do the shopping. If there’s a place she wants to go, I take her.” Sandy has not driven since the accident.

On weekends Friedel works at Kaneohe Yacht Club where his day begins at 3 a.m. and finishes at 10 a.m., leaving him enough time to get home and be there for Sandy around the time that she gets up. Those early mornings at the club are his “clear-my-head time.” He also works out at least four times a week, rising early two days to jog and spending two lunch hours swimming at the pool at Manoa Valley District Park.

When asked if he would consider hiring help so he can have additional respite, Friedel says, “Sandy bathes herself, dresses herself and takes care of herself. If she couldn’t take care of normal hygienic responsibilities herself, then that would be a different matter.”

Her positive attitude also has been a key factor; all it takes is a smile from her to ease Friedel’s occasional feelings of fear and anxiety. “I wouldn’t want her to ever feel that she is a problem,” he says. “We are best friends. We are extremely close.”

That unbreakable bond is all Friedel needs to keep going, keep loving unconditionally. And that is what caregiving is all about.

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