Switching roles: When it’s your turn to care for your parents

| PHILIP A. DWYER THE BELLINGHAM HERALD

• ELDERCARE IN 50 STATES
  
  Senior information and assistance is available in every county in the nation to connect older Americans and their caregivers with information on senior services. The gateway to this information is the Eldercare Locator at www.eldercare.gov or toll free at (800) 677-1116.
  
  Designed to help older adults and their families and caregivers find their way through the maze of senior services by identifying trustworthy local support resources, it is a service of the Administration on Aging, U.S. Department of Health and Human Services.
  
  LOCAL RESOURCES
  
  Whatcom County Medical Society:
  3130 Squalicum Parkway, Suite 100, 676-7630.
  For new residents needing referrals to doctors.
  
  St. Joseph Hospital Center for Senior Health
  3015 Squalicum Parkway, Suite 100, 715-4186.
  Geriatric care includes a physician, nurse, social worker, and dietitian. Medical and social care provided to older adults with Medicare Part A and B coverage. Professionals provide services to meet the physical, social, emotional, and spiritual needs of the older adult. For more information, email Sandra Gilbert: sgilbert2@peacehealth.org.
  
  St. Joseph Hospital Adult Day Health
  South Campus, 809 E. Chestnut St., 788-6410 or 715-6410 or www.peacehealth.org/whatcom/adultdayservices.
  8 a.m. to 5 p.m. Monday-Friday. Program fees vary, payment options are available. WTA Specialized Transportation is available. Caregiver support groups second and fourth Tuesdays each month, 12:30 to 2 p.m.
  
  St. Lukes Community Health Center
  3333 Squalicum Parkway, 738-6701.
  Five Wishes – Writing your Living Will (two-hour workshop), walk-ins welcome.
  
  Northwest Washington’s Area Agency on Aging
  600 Lakeway Drive, 738-2500 (V/TDD) or 380-8121 (V/TDD), www.nwrcwa.org.
  Staff is available to meet with clients 8 a.m. to 5 p.m. Monday through Friday, by appointment. Will come to your home if you can’t get to the Lakeway Drive office. Most questions can be answered over the telephone.
  
  SHIBA – Statewide Health Insurance Benefits Advisors
  Local SHIBA Help Line: 788-6533; 24-hour toll-free hot line: (800) 562-6900 or (360) 586-0241 (TDD); program coordinator: (360) 788-6532. Web site: www.insurance.wa.gov/consumers/SHIBA.
  For information about health insurance, health care and prescription access.
  
  WTA – Whatcom Transportation Authority
  Info: 733-1144 or 676-6844 or www.ridewta.com.
  Specialized Transportation. Cash fare: Seniors pay 35 cents, adults older than 80 are free.

If they fall ill, you may suddenly be responsible for their transportation, grocery shopping, hygiene, medical appointments, hospital care and all the other activities they can no longer do for themselves.

Here is a guide to help you plan for stepping into the role of a family caregiver.

NOTICING SUBTLE CHANGES

Five years ago, Seattle-born and raised Bob Rieke was pastor at the United Church of Christ in Sauk City, Wis., when he and his wife, Sharon, flew to Kent to visit his parents.

Now 62 and pastor at Blaine United Church of Christ, Rieke noticed subtle changes in his father, an 83-year-old retired minister. “He was writing everything down, lest he become confused.” There were other troubling signs, too.

Rieke and his brother Dan noticed their father was not as mobile and was unable to carry on a give-and-take conversation. His driving decisions frightened them.

Both agreed it was time to step in and assist their parents. “It was as if we had a mini summit to make the decision,” says Rieke. “I offered to try and get a congregation closer to Kent. It was serendipity and great fortune that I applied to the United Church of Christ in Blaine and was called there.”

As baby boomers mature and the senior population grows significantly larger, this drama is replayed all over the country. Seniors and adult caregivers need answers and advice on how to handle what for them will be a life-altering experience.

Along with identifying the illness, many practical matters need attention.

Karen Ssebanakitta, director of oncology, hospice and senior community services at St. Joseph Hospital, suggests, “Start a conversation before a crisis.”

This conversation should always include preparing a legal advance directive, or living will, which assures patients and caregivers that decisions regarding future medical care will reflect the patient’s own wishes, in the event they are unable to voice those wishes themselves.

Also, prepare a durable power of attorney naming the patient’s health care proxy: someone trusted to make health decisions if the patient is unable to do so.

“We can help our parents,” Ssebanakitta says. Each month St. Luke’s Community Health Center holds “Five Wishes — Writing Your Living Will,” a free interactive workshop to show people how to complete advance directives and living wills.

ONCE AN ADULT, TWICE A CHILD

Eventually, Rieke and his brother asked his parents to move to Bellingham.

“Then we noticed, over the summer, father’s descent into Alzheimer’s,” says Rieke.

Fifteen months ago, his father fell in the shower and was taken to St. Joseph Hospital. While there he became gravely ill with pneumonia and a blood infection and nearly died.

“Mother was in a swirl,” Rieke says. “They’d been married for 66 years and mother did not literally know what to do. Since father was being cared for, we tried to care for mother.”

In the event a parent enters the hospital, the family or a caregiver can request that a social worker be assigned to the case, explains Ssbbanakitta. The social worker can assess family needs and help them plan for a safe discharge.

Persons making repeat visits to a hospital may reach the point of not wanting to go any more, so Ssebanakitta suggests caregivers develop a plan with their doctor for managing a crisis at home.

“Have a conversation with the doctor and ask, ‘What can I do to prevent having the person come back to the hospital?’” Ssebanakitta says. “Good questions between a patient or caregiver start to get clear with the doctor the following:

What is the goal of the care in the hospital?
• What is the expected course of the illness from here on out?

• What’s the best quality of life that can be expected when the treatment works?

• Are there alternatives to the treatment used?

Ssebanakitta’s final word of advice is: Be prepared by checking out, long before it’s necessary, the many senior options and programs available in Bellingham.

“This is government doing it right,” Ssebanakitta says. “People constantly say, ‘I didn’t know (these programs) existed.’”

‘We supported each other’

For example, The Bellingham office of the Northwest Regional Council, Northwest Washington’s Area Agency on Aging can also act as a guide for everything a senior might need in preparation for a hospital visit.

“I would suggest that if you’re going to be in the hospital for a period of days, call ahead of time and ask for a social worker to come see you and your caregiver while you’re there,” says Lesley Rigg, an NWRC information and assistance specialist. “They can help you with discharge planning and (other) things.”

When it was time for their father to go back home, the Rieke family felt their mother was physically unable to care for him, so they found a nursing home near the hospital.

The family met with the nursing home staff and discussed the level of care they wanted their father to receive.

“These were emotionally difficult times and we supported each other,” Rieke says. “Mom hardly left his side, we were there almost all the time to support her, and he made it through.”

Through experience they’ve learned how to advocate for him — by carefully monitoring his care and consulting on a regular basis with the staff.

“I’m certainly a person who trusts people, but it’s just like working with teenagers as a pastor or counselor — I would caution ‘trust, but verify,’ ” Rieke says. He advises other caregivers with someone in a nursing home to actively negotiate for the proper care of loved ones and verify that the home is following through with the care that’s requested.

To ease that learning curve, NWRC provides free information and assistance on all aspects of senior care, including Medicare and Medicaid, to Whatcom residents 60 or older, their families, caregivers and friends.

For families who might be on the verge of becoming adult caregivers, Rieke advises communication. “If there are siblings, brothers, sisters or parents, have an active and authentic dialogue or conversation with each other about how you feel about the situation and discuss what you need to do to be as one in terms of care, so that no one gets left out of the information loop.”

He says that family contact and maintaining a sense of humor is good medicine. “There are some wonderfully humorous moments, like the time father tried to put his dentures on his eyes and his glasses in his mouth,” he recalls. “You’re not laughing at the person, but with them.”

SOLVING SENIOR PROBLEMS

The NWRC also offers free handouts about in-home care, medical insurance, Medicare/Medicaid, medical/dental, prescription assistance, caregiver support, housing and long-term care options.

Other brochures cover property tax deferrals, power of attorney, living wills, advance directives, transportation and disabled person parking permits. Their handbook, Whatcom County Senior Resources, is an A-to-Z telephone directory with telephone numbers for any resource a Whatcom senior might need.

“The purpose in having trained and skilled people at the end of the phone line is that we can drill down from your initial questions and find out the real underlying problems,” explains Lesley Rigg, NWRC information and assistance specialist. “Often, if we just answer the first question we miss the underlying problem, or a whole area, so that’s why we really prefer people to call us.”

For example, a senior new to the area might need to sign up for Medicare and find a family doctor. “We have a list of doctors who take new Medicare patients but they might not be able to see you immediately,” Riggs says. “So if you have an emergent need before that the only two resources are the emergency room at St. Joseph Hospital or the walk-in center. If you can wait over a period of weeks to see a doctor then we can give you a list of doctors.”

Many senior decisions depend on insurance, so counselors need to know whether the senior has standard Medicare, supplemental insurance, or a Medicare Advantage plan, then they direct that person to doctors who take their plans. If a client only has Medicare coverage, then NWRC has a list of supplemental insurance plans available locally.

Statewide Health Insurance Benefits Advisors is a volunteer service that helps sort out supplemental insurance plans including health insurance, health care access and prescriptions.

NWRC Planner Maureen Kane adds, “We also have a program that we link to called The Family Caregiver Support Program. In that program, if you are the caregiver then you are our client, and we’re dealing with your decision-making and your finances.

“For example, do you need an occupational therapist or physical therapist in your home to check things out?” she says. “We can send people in to consult with you, so while Lesley’s working with the client you can work with Lesley, too, because she can access the Family Caregiver Support Program for support or respite. Some people with low income need help with respite care and we can provide that. It’s a state and federal service.”

LONG-DISTANCE DEVOTION

Carol Choulochas and her sister Ann Elmer show the teamwork it takes to care for an elder. Elmer lives in Sterling Heights, Mich., near their mother’s senior retirement home. Choulochas lives in Birch Bay. But every three months she flies to Michigan so Elmer can have time off.

“She tries to stay around, but every now and then you need to be someplace else,” says Choulochas, 66. “For the last several years, I’ve been going back to visit them with the idea being not so much to help my mother, but to give Ann a break.

“Typically, it’s a social visit but seems to serve the purpose to help my sister. If she wants to leave, she can,” says Choulochas. “It gives her a chance to let it go for a while.” Choulochas generally stays 10 days, but would stay as long as necessary if her mother were ill.

Ssebanakitta explains that caregivers have options that they should utilize for respite. For the family caregiver with loved ones at home, St. Joseph Hospital Adult Day Health can provide much-needed support. This community-based day program aids seniors or adults with chronic illnesses or disabilities. Daytime activities include a range of abilities and interests led by either staff or volunteers.

This program provides what caregivers need most — some respite — and a safe place for loved ones during the day so they can have some time to themselves. Twice a month, Adult Day Health hosts caregiver support groups. One meeting is a general sharing session and the other features presentations on caregiving topics.

In Choulochas’ situation it takes extra coordination. When her mother was younger she made all her own Medicare decisions. But when the new Medicare drug bill went into effect, Elmer researched the options, making the decisions about which supplement program to use and updating Choulochas along the way. Choulochas and Elmer both keep a list of their mother’s medications.

Working together, the sisters arranged the rest of the legal details and during each visit, Choulochas and Elmer review any items needing discussion. Because Elmer lives nearby, she is the executor of their mother’s estate with medical power of attorney.

“The last time I visited, we discussed funeral arrangements. Mother is 87,” Choulochas adds.

“Although she doesn’t remember it now she’s the one who suggested moving into that situation,” Choulochas says. “My sister and I have been quite fortunate that Mother gave up driving on her own and then said, ‘I want to live in a retirement home,’” where 24-hour assistance is available and all residents wear wristbands enabling staff to locate them in an emergency.

DOWN THE ROAD

In similar situations, Riggs advises clear communication with caregivers and patients.

“With a caregiver, often you’re working with their perception of their parents’ needs,” Riggs of the NWRC says. “We much prefer to work directly with the senior. We will support you as a daughter or son in outlining what your concerns are, and then we want to talk to the seniors themselves.

“Too often caregivers come in and say, ‘I need to put my parents in assisted living,’ then we talk to the parents and they have no intention of going into assisted living. That may be a plan down the road and we’re dealing with their needs right now. They may (only) need someone to come into their home once or twice a week and help them.”

“You want to let people make their own decisions as long as possible,” Choulochas says. “I don’t know if we started treating our parent like a child earlier than necessary, but lately we’ve noticed that mom is forgetting a lot of things. So when we drive her to the doctor we go in with her because she can’t remember what she was told to do.”

Choulochas and Elmer agree on their mother’s care and their preplanning has helped everybody out.

“In some families that doesn’t happen,” Choulochas says. “But we’ve got the same vision of how we should take care of our mother, and that’s a real plus for us.”

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