Home is where the heart is. Home sweet home. I want to go home. And, as Jane Austen wrote, "There is nothing like staying at home for real comfort."
The sentiment doesn't change as parents age. When health declines and it becomes difficult to do what used to come easily, that desire to stay where they are remains. How does the family know when it's time for Mom or Dad to give up independent living? What if it is time, but they aren't ready?
Dr. Masil George, a palliative care physician at the University of Arkansas for Medical Sciences Institute on Aging, has to broach the topic with her patients and their families quite often. Sometimes "The Talk" is spurred by an accident -- a fall, a broken hip, an illness -- and the patients merely need therapy to recover so they can live at home again.
"But there are some instances where they're not able to do the things that they were doing before their illness or they have an illness which is chronic and which gets worse over time, like Alzheimer's and dementia, and they forget important things," she says.
For guidance, she looks to two categories of tasks people must be able to complete to live independently:
• Instrumental activities of daily living, which include actions like using a telephone, shopping, driving, managing medications and managing money;
• More basic activities of daily living, such as maintaining personal hygiene, dressing, moving from a bed to a chair or a wheelchair.
"If a person has trouble navigating the instrumental activities of daily living, they can continue to live at home safely as long as somebody is supervising them," she says.
"However, when they lose their ability to perform activities of daily living, when these become difficult and they need hands-on help," then a parent can no longer stay home without full-time assistance.
Sometimes family members can meet increasing needs, she adds. Sometimes they can't.
"Older adults are living longer," she notes, and often a mother in her 90s has daughters in their 60s or 70s. "They're starting to have medical problems of their own. It's difficult for them to be physically able to lift, help shower, be sleep-deprived constantly. And there are financial constraints.
"Also, they have their commitments, they are mothers and grandmothers and wives, and it becomes stressful or impossible because of physical limitations or financial constraints." And sometimes aging children live far away from elderly parents. Then the elders "need to go to a place where someone can provide these things for them."
Priscilla Pittman, program director with Alzheimer's Arkansas, provides a checklist to caregivers who aren't sure if they need extra help. The list is from And Thou Shalt Honor: The Caregiver's Companion by Beth Witrogen McLeod and Rosalynn Carter.
"It's a good checklist because sometimes we're blinded. We're in denial and we have so many personal issues dealing with this," Pittman says. "It really is hard because you're so accustomed to just doing it. You're just responding, and this is what you do every day, and you don't realize how taxing it is or how much they're declining because you just take it in stride, because you just do this and you do this and you do this."
HELP AT HOME
There are options.
CareLink, a nonprofit organization based in North Little Rock, offers free information and assistance in a wide range of services that help senior citizens stay in their homes. These include home care, Meals-on-Wheels, the Emergency Response Button and respite services.
And while there have long been companies that offer home health care visits by nurses and other medical professionals, the past decade has seen an increase in the number that offer more basic home care assistance.
One of those, Comfort Keepers of Bentonville, provides companionship, personal care, transportation, respite and end-of-life care for clients. Comfort Keeper caregivers are in homes from three to 24 hours daily. Their roles range from simple companionship to housekeeping, cooking, running errands and providing transportation.
"We help them prepare a meal, and we get their minds working again, and we try to help them with physical exercise, and we help them with laundry and help them sort clothes. They're just getting some activity going again," for example, helping the client fold towels, "and getting them to engage in life again," says Gary Halstead, who was a minister for 30 years before opening the Comfort Keepers business.
Caregivers can, with permission from clients, go into doctor's appointments to take notes and then share the information with the patient's family, Halstead says. This can be an invaluable service for those who have trouble comprehending or remembering what a doctor says during a visit, as well as for loved ones who live too far away to accompany them.
"We can just give everyone continual updates on what's going on," Halstead says. "We also work closely with doctors, when they see that their patients need more time walking, more exercise, and we can get them doing something."
MANDATORY EDUCATION
Margaret Christensen, a project director with the Schmieding Caregiver Training Program through the University of Arkansas for Medical Sciences' Schmieding Center, helps train caregivers to work with agencies, or as independent personal caregivers.
Act 1410 of 2013 requires all paid in-home assistants in Arkansas to take 40 hours of training on body mechanics, communication skills, dementia and Alzheimer's disease, emergency and safety situations, infection control and prevention, nutrition and more.
The Schmieding Center offers a course that satisfies the requirements of the law, as well as others tailored to caregivers of people with Alzheimer's or another dementia ailment; on advocating for patients and families; and on recognizing the chronic diseases frequently seen in older people.
COMMUNICATION IS KEY
Frank discussions between parents and children will make some of life's natural transitions less traumatic, Christensen says.
"If a person is living alone in a house, and they are physically able to take care of themselves, and they are mentally capable of making decisions, nobody can make them move out of the house. If somebody does not want to move, you cannot make them move.
"You would have to go to the court and get a court decision that says they aren't capable of making decisions -- and that's a real hassle," says Christensen, who is 76. "What I encourage people to do before they get to that point is to talk about it."
Recently, she says, she and her husband, who is 80, sat down with their daughters and assured them that they have permission to make arrangements, including moving them out of their home "when we get to the point where you all agree that we need to be someplace else."
"We tried to do it ahead of time because if you get to that kind of gray area where you're not sure about it, you want to make sure that the children aren't held hostage and feeling guilty forever."
There is no one-size-fits-all advice to ease the path.
"This is going to vary so much from individual to individual. Age has nothing to do with it. You can't say, for example, that everyone over 80 years old needs a caregiver. It doesn't work that way," Christensen says.
An acquaintance of Christensen's died recently at the age of 102. He had lived alone, driven himself everywhere and even worked until about a year ago. And her husband plays in two bands and works full time. He would run circles around a caregiver.
"As long as they are in a home in a safe environment, if they're not having to climb stairs to go to the bathroom, and they're safe, then they can stay home until they die.
"So the transition to assisted living happens when someone just isn't safe at home anymore," she says.
"Also, they need socialization. If they're living in a house and they're not speaking to another human being, their physical and mental decline tends to speed up. So sometimes it's just a matter of needing to be around some other people, that this staying home and being by myself and 'I can't drive anymore and I never see anybody and I've got a caregiver who comes in and helps me take a shower and then she leaves and I'm home alone all the rest of the time' ... a lot of times the person themselves will know that it's time to move into assisted living or something like that."
DOCTORS CAN HELP
When an elderly patient appears to be struggling -- maybe there's a fender bender or medication isn't being taken properly -- Dr. George will bring up the need for supervised care. She aims to start a discussion before the situation becomes dire.
"This is not a conversation, it's almost a catalyst -- patients and families have often already talked about it themselves, and they are waiting for guidance from the physician or for the physician to start the conversation. I like to start this earlier rather than later because it takes time for people to think and talk and process. ...
"Sometimes the families are more willing than the patients -- very rarely is it the other way around. But sometimes patients do initiate the conversation themselves because they want to go to a place where things are taken care of for them."
Family on 09/17/2014