"If you find yourself caring for a relative with dementia, the chances are you'll need help." -- Phyllis Logan, Scottish actress who played Mrs. Hughes in Downton Abby, (1956 -- )
BY JULIA ANDERSON
“Don’t keep it a secret.”
That’s some of the advice offered by Joan when she spoke with me about her ongoing struggle to care for her 82-year-old husband at home.
First diagnosed with Alzheimer’s in 2011, he is still able to dress himself and eat on his own but he can’t leave the house and needs constant management.
Joan describes her situation as an ever-tightening trap.
“My kids and my friends understand the pressure I’m under,” the 72-year-old woman told me. “It’s an emotional and financial roller-coaster.”
Joan (not her real name) and her husband live in a single-family home in Washington state near Portland, Ore. Living on Social Security and some savings, they can not afford the $5,000-a- month services offered at a 24/7 Alzheimer’s care center for her husband.
Unfortunately, they have more assets than qualifies him to receive care paid for by Medicaid, the state-run federal program for low-income people.
That leaves Joan as his around-the-clock primary caregiver.
“Physically, there’s nothing wrong with him,” she says about her husband who she married in 1998. “I’ve looked into places where he might be comfortable but we can’t afford that. I tried adult daycare but he bolted… set off the alarms. They asked me not to bring him back.”
Joan is not alone with her burden. There are an estimated 850,000 people in Washington state alone who are providing unpaid in-home care for a disabled and/or aging parent or family member, reports the Washington State Council on Aging. Nationwide, there are millions of people in this situation, many of them women.
Informal, uncompensated caregiving is estimated to be valued at $10.6 billion in Washington state. But money may not be the biggest issue.
“It’s such a stressful thing especially if you’re dealing with dementia,” said Gail Haskett, Washington State Council on Aging chairwoman and owner of Northwest Healthcare and Aging Resources in Vancouver, Wash.
Established 16 years ago, her firm provides a range of in-home care, hospice and companion services. Haskett is a licensed nursing home administrator.
“In-home care may start with just drop-in visits by a family member just a couple of times a week,” Haskett said. “But often it goes up to a 24-hour situation. Families must ask themselves how much time are they able to give to it. If it’s just two people it’s hard.”
As an industry, in-home health care in Washington (and nationwide) is struggling.
Haskett said that’s because demand for services is increasing, employment regulations regarding caregivers have changed, costs are going up and finding qualified and dedicated caregivers is a challenge.
“A big worry is that people are trying to stay at home with help from family members,” Haskett said. “Many of these families are taking on too much, which opens the door to burn out and to emotional abuse. The stresses can be unbelievable.”
Those, like Joan, who take on the responsibility of an aging or disabled family member, often battle to balance the demands of full-time care giving with the need to have a life of their own. The good news is that there are resources in your community where you can find advice and assistance. For Joan assistance has come in several ways:
She sought counseling and information through her local Area Agency on Aging & Disabilities. Most towns and cities have these centers.
“I found those folks to be really helpful with all kinds of information,” she said.
With assistance from agency advisers, Joan is arranging for 20 hours of “respite” support care a month. The reduced cost for those services is linked to her household income.
Meanwhile, she has hired someone to stay with her husband for four hours on Fridays so that she can get out of the house.
“My advice is to not keep the situation a secret,” she said. “Talk about it with your (affected) family member before they can no longer work with you. Find out their wishes. When I look back I wish I’d put my assets in someone else’s name years ago to protect my financial future after he’s gone,” she said.
Joan said her single greatest resource in managing her situation has been classes offered for in-home caregivers through the Family Caregiver Support Program in her home town that’s available through the area office on aging.
“Get as much help as you can from anywhere you can get it,” she said.
Lexie Bartunek, coordinator for the local in-home caregivers program, says her office helps hundreds of people a year.
Her best advice for someone beginning the planning process for in-home care is to contact the program’s information and assistance line.
“We have specialists trained to help people sort things out and set priorities,” Bartunek said. “You don’t have to be a blood relative to get this support; this is available for anyone in an unpaid family caregiver role.”
Mayo Clinic experts offer advice
If a person is in need of care, they likely are dealing with loss…lost of physical and mental abilities, loss of memory and independence. According to experts at the Mayo Clinic based in Rochester, Minn., caring for the elderly is particularly challenging, if the person is resistant to care.
If a spouse or parent always has been in charge, it can be difficult for them to give up that control. To encourage cooperation, they suggest:
- Giving care giving services a trial run.
- Describe care to the person in need in a positive way. Talk about a home provider as a friend or respite care as a way for them to do something they enjoy.
- Explain your needs. Remind the person that there is sometimes a need for compromise.
- Explain how care might prolong independence. Explain that loss of independence is not a personal failing. Keep in mind that these strategies may not work when dealing with someone who has dementia, the experts say.
“Of course, the key to all this is advance planning,” Haskett said. “That planning should occur before grandma or a spouse loses their capacity to provide direction. Sit down with them sooner than later and lay out what they want done…that’s hard to do.”
Not always a ‘loved one’
In addition to the financial and care challenges facing families who might be organizing in-home care, there may be emotional “baggage” that can affect relationships.
“Loved ones aren’t always loved ones,” Haskett said. “Your relationship with them may have been challenging. Your relationship with them as an adult child may be strained. They may resist care,” she said.
Haskett recommends that families find out about what in-home care Medicare might underwrite and what it will not. Unless there are doctor’s orders related to recovery from a fall or from a home-bound situation, Medicare may not be part of the picture, she said.
“Advance financial planning and advance emotional planning are both important,” she said. She agrees that if someone is in the beginning stages of dementia, family members may have little power to do anything. An elder law attorney may be a helpful resource.
Meanwhile, Joan said that as her husband’s dementia has worsened. She said that she has “dealt” with his driver’s license and financial management issues. She has updated their wills and spelled out health care directives.
“He’s been declared incompetent,” she said with a sigh. “But by the time I acknowledged that something was really wrong he was beyond the ability to make decisions, to let us know what he might want to do,” she said. “At this point, whatever decisions I make, my kids will support. (She has four who live elsewhere). They call me often and tell me to be safe.” Of some compensation in the bigger scheme of things, Joan, says, is that her husband still tells her that he loves her.
8 Rules for New In-Home Caregivers
1. Talk about it with family members. Determine needs. Designate roles. Listen to concerns.
2. Set priorities. Make a list of what needs to get done and how it will get done.
3. Build a support network of family, friends and neighbors, civic and religious groups.
4. Delegate. Ask others to check in, to provide respite care and/or transportation services.
5. Offer alternatives. Family members with young children can prepare food. Those who live far away can help with bills or use the phone or Internet to research services.
6. Hold family meetings. Schedule them regularly and link up distant family by phone. Consider hiring a geriatric care manager to run the meeting.
7. Involve your own children. Listen to their concerns, plan time for fun activities and request their help.
8. Talk to your spouse. Have a discussion about your care giving responsibilities. What will their role be? Talk about frustrations. Your own relationship is a priority. Keep it that way. Source: AARP.
Books for Caregivers:
“Caring for Yourself While Caring for Your Aging Parents,” by Clair Berman.
“The Caregiving Wife’s Handbook,” by Diana Denholm.
“A Bittersweet Season: Caring for Aging Parents and Ourselves,” by Jane Gross.
"Who Pays Mom's and Dad's Nursing home bill? Filial support laws, click here.
National Family Caregiver Support Program, click here.
Alzheimer's Association, click here.
Hiring In-Home Help, click here. Family Caregiver Alliance.
Protecting Assets, Preserving Quality of Life, Aging Options, click here.
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