Caring for elders at home: emotional costs, balance of support, and other tips from an expert

- Patrick Leung has studied elder care for 25 years. He says letting an aging parent live out their final years at home has major benefits.

"Most elderly prefer to stay in their own home. They say 'I want to die in my own house'," says Leung, a professor at University of Houston Graduate School of Social Work. Families must consider such a request is, in a way, the person's dying wish.

This week, a video of an elderly Houston woman being abused by an at-home caretaker has gone viral, increasing discussions of how to care for aging parent or grandparent.

Pew Research estimates 60-million American homes are now multi-generational, with grandparents or elder parents living at home -- numbers we haven't seen since the 1950's. Caring for elders is part of some cultures and therefore a natural phase of life for certain families. Still, every individual's needs are unique and care can become overwhelming for a non-professional family member to provide.

Professor Leung removed his own parent from a nursing home after his father fell 6 times over the course of 6 months. He feels many nursing centers are routinely under-staffed, and the staff too under-paid, to facilitate a proper culture of care.

While Leung agrees caring for an elder yourself can save money and protect against outside abuse, but warns it can come with emotional costs.

"This is a full time job," Leung warns. "You burn out very quickly."

Leung says it is usually three months into full-time care that a care-giving family member will begin to experience negative emotions, such as stress or depression. He even cited a case where a care-giving husband committed suicide from the pressures. It's why Leung encourages families to not rule out professional support entirely.

"I recommend you don't just rely solely on family members," said Leung. He advises people look at services that provide several hours of supervision and care to serve as relief.

Leung, who shuddered at discussions of the elder abuse video circulating out of Houston, emphasized how vital it is to screen someone prior to allowing them to provide care.

"Each elder comes from a different background," explains Leung. "You have to be very careful when you screen the professional to make sure you check their background, and that they are culturally competent."

Leung gives the obvious example of hiring a Spanish-speaking home health aide if that is the elder's first language. He also points to more subtle aspects of culture, such as the importance of someone who can honor the elder's longstanding lifestyle choices; when they prefer to eat, the type of music they enjoy, and so on. Asking an elder to change their routines can, according to Leung, be very stressful to all parties.

Texas Adult Protective Services encourages families to request an FBI background check on any home health aide prior to hire. They further encourage a check with the Better Business Bureau if the care giver is tied to a specific agency.

There are two types of home health care providers, says Leung. "Some home health aides that you can hire basically stay there overnight. They do supervision only - they don't help the elderly to bathe, cook, or those kinds of things," he says, pointing out these aides are best hired for evening supervision.

"For daytime, you might hire someone with more skill sets in terms of knowing how to take care of the elder," says Leung. He lists cooking, bathing, laundry, and medical skills as important to discuss prior to hiring a daytime health aide. Such aides can be hired for 3-5 hours each day, or even on alternating days, to allow a healthy break for family care givers.

Once a family finds suitable home heath assistance, Leung advises dividing the care responsibilities among multiple adult family members to reduce the risk of burn-out or stress.

Adding accountability through technology is important, says Leung. "I advise you install a camera at home, with consent from the parent of course, and the worker. As a result, you can monitor from your smart phone to see what's happening and the person will feel monitored."

Camera systems like Canary and Nest Dropcam range between $150-200 per camera and are easily installed by plugging in a power cord and connecting to wifi. Multiple users can access the live feed from their smart phones. Camera systems can record activity for review later, making them a helpful resource for anything from abusive care to fall incidents where video can provide crucial information.

Speaking of falling, Leung adds that living in their own home results in fewer falling incidents for an elder. "They know how to walk in their own home," says Leung.

Fear of negligent professional care is the reason Houston resident Stelena Evans says she is glad to care for her 95 year old mother at home, without a home health aide.

"A nanny cam just isn't sufficient because it happens after the fact that you see it," says Evans, who has cared for her mother Mildred through dementia for the past decade. Evans claims placing mom in a care facility was not an option. "I was afraid she may not have the comfort and caring I would give her."

Evans has found extra support in a daytime program with multiple care givers.
 
"If you have more than one person caring, then that to me is like a watch dog," said Evans, whose mother attends several hours of day activities at a group care program. "You have several other people that may correct you, and you may not do any ill to that person because you have witnesses."

At her daytime program, Evans' mother Mildred takes part in games, crafts, lectures, and other activities designed to stimulate and engage the mind. Evans says the therapeutic and social aspects are something Mildred would not otherwise experience at home.

Evans says she found the program thanks to tips from fellow church-goers. "They come up to me and say 'I'm praying for you.' I'd say, 'oh, thank you, but why?' They'd tell me their parent went through the same thing," says Evans. Those around her noticed the signs of her mother's condition even before she could, Evans says. She recommends checking with local churches, YMCA's and community centers for similar programming.

As for herself, Evans attends a support group for family members who care for elder parents. She finds comfort in talking to others about going through similar situations. She says she has gained valuable insight into how to navigate some of the more challenging aspects of care that a doctor won't necessarily address.

At one meeting, Evans says members were told to put their hands up to their eyes like binoculars. This simulated how a person with dementia views the world. Evans says she now understands why approaching her mother from the side or behind would sometimes startle her.

Becoming part of a culture of elder care is, according to Professor Leung, a huge benefit. Leung points to Asian, Hispanic and African American cultures as having a rich history of honoring elders by caring for them in old age. Engaging in early conversation about care with family helps set expectations among all family members for how life will be once a loved one enters old age.

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