Unless, until and even when it happens to affect you, the idea of having to parent your parents or grandparents is far removed from the reality of planning ones' day-to-day operations. Attending to your "needs" as a single individual or the needs of caring for a spouse and children, and maintaining good employment are the basics for most us as we go about our weekly business.
But our world is aging. Your parents and their parents are getting older.
Much is said today especially of Baby Boomers, those who were born between 1945-57 (years vary depending on theorists), and younger adults in their 30s who have taken upon themselves the care of their aging parents. And the day-to-day care of the ever growing population of seniors in America today is being born more and more by adult children.
The two extremes of this care range from adult children renovating their homes to accommodate their aging parents to finding the ideal spot from the more than 36,000 nursing homes or assisted living facilities in the country in which to place their parents. And, there are many options in between.
Whatever the plan the family establishes, this new lifestyle becomes a very time-consuming and difficult balancing act for both adult children and their aging parents. This role reversal of children parenting their parents--feeding them, taking them to doctors' appointments, taking them to adult daycare, bathing and caring for their personal hygiene--are tasks normally restricted to caring for younger children.
The reality many are facing head-on today is that adults in their most productive years--dealing with raising their own children--are being called upon to begin providing care for those who raised them.
And, the emotional, psychological and physical strain resulting from dealing with parents--who once were so strong and capable, but who have regressed in their mental and physical health to the point of needing someone's care for their daily living needs--is daunting.
In the U.S. more than 35 million Americans are 65 and older; more than 12 million of these require some type of long-term care. And so many offspring of this aging population have assumed the often difficult yet necessary care of their elderly parents.
According to the University of Southern California/Alzheimer's Association, 7 million Americans provide 80% of the care to ailing or vulnerable family members; there are about 3.3 million long-distance caregivers living an average of 480 miles from the people cared for; and 15 million days are missed from work each year because of long-distance caregiving.
Much is written today about this subject, but there are some basics that adult children need to know about caring for their aging parents.
November is National Caregiver month, and according to the Administration on Aging, there are more that 300,000 family caregivers in Oklahoma who devote on average almost 400 hours each year (around 35 hours per month) to care for others.
While definitions vary, a caregiver can be defined as someone who provides unpaid assistance to a relative or friend with an illness or disability that leaves them unable to do some things for themselves or who needs assistance because they are aging.
According to the Kaiser Family Foundation (kff.org) 1 in 4 (more than 45 million adults in 1998) provided or arranged help for a family member or friend in the year before; 40% of caregivers are helping because their family member or friend could not afford to pay for outside assistance; and 37% of caregivers say the person who needs help didn't want strangers in the home; 60% of caregivers are married; more than 50% are under age 45; and nearly 2/3 of primary caregivers are women.
"The Sandwich Generation" is familiar parlance today for those 'sandwiched' or wedged between caring for their aging parents and caring for their own children. Moreover, Carol Abaya, M.A., nationally recognized as an expert on caring for the aging and the sandwich generation, as well as a syndicated newspaper columnist, has coined the term "Club Sandwich," which more closely narrows the definition of adults in their 50s and 60s who are "sandwiched" between aging parents, adult children and grandchildren, or those adults in their 30s and 40s with young children, aging parents and grandparents.
Furthermore, Abaya also names anyone (outside of these definitions) who are involved in caring of the aging as "Open Faced" sandwich.
Who Can Help?
Andrew Donnelly, M.D., Clinical Assistant Professor in the Department of Family Medicine at OU-Tulsa, says while many go into caring for aging parents thinking it will be a difficult burden, he says "there is a lot of beauty in the human condition when taking care of people." He adds that people generally care for one another and are willing to assume the role of caregiver when the need arises.
Since 2003, Dr. Donnelly has been the Medical Director of the Manor Care Nursing Home which entails learning of each new patient who arrives at this Home, and subsequently making monthly visits to check on the status of each patient, including such aging issues as depression, pain and skin wounds. "I see these people as my own patients," Donnelly states.
Donnelly claims that many families and many aging adults for too long have adhered to the old adage that 'if it's not broke, don't fix it.' "Today, we work on preventative health," he explains, "to decrease the loss of individuals losing their independence fully. We need to be proactive--looking over the medical issues of the patient."
So what should children of aging parents look for? Some basics to observe are the memory losse of the parent--what is normal memory loss and what is not? Dr. Donnelly says screenings can check this, as well as three other areas of basic care: cardio-vascular, immunizations, and cancer screening. He advises once these checks are made, a plan of care for the person can then be established.
Getting routine check-ups and having a comprehensive list of ancillary services available in the community to help the caregiver care for aging seniors is part of the inventory of care for aging adults. "We need to be sure we optimize their status, with the hope that they do not have to be hospitalized" in the future, says Dr. Donnelly.
Renee Watkins, R.N., B.S.N., B.C., C.M.S.R.N., who is board certified in gerontology and a Patient Care Coordinator of the elderly at St. John Medical Center, knows first hand what neglect of care can do to the elderly--they often must be hospitalized.
She agrees with Donnelly that observing the senior is very important--what is normal aging and what is not, such as 'How to they think?'--does what they say and do make sense? Can they care safely for themselves?
Donnelly and Watkins both agree that aging adults have much to offer younger people. "People can still be witty (at this age)," says Donnelly. "They enjoy telling their life stories. We need to reassure them that we still care for them and accept their decline."
Watkins adds that the elderly feel they are just not heard and not appreciated. "We need to play an active roll in their lives--talk with them each day; that way we can notice when their mental status begins to change."
In addition, she says we need to observe things out of the ordinary. To do this, she suggests regularly observing them for short periods of time, and keep them active in their plan of health.
A highly recommended community resource for the elderly, says Watkins, is LIFE Senior Services (seniorline.org, formerly Tulsa Senior Services) which helps older adults and their families solve problems that threaten independence, quality of life and dignity of life as age takes its toll.
Programs include Adult Day Services, Case Management, Caregiver Services, Senior Centers, Senior Peer Counseling, and Vintage Housing. Additionally, she says they may be eligible for the ADvantage Program, an Oklahoma Medicaid program that is an added option to nursing facility care.
Those eligible may receive services (case management, personal care/hygiene and homemaking assistance, home-delivered meals, adult day care, skilled nursing, environment modifications and specialized medical equipment and supplies) in their homes to maintain independent living, with the stipulation that the average cost of care is equal to or less than the cost in a nursing facility.
In dealing with the elderly, the aging body/mind is at the center. Basic normal aging, says Watkins, which can affect a senior's outlook on life, are such things as a notable deterioration and dulling of the senses (hearing, smelling, tasting, seeing); basic stamina decreases (cannot perform some basic living tasks as before); normal aches and pains are more difficult to bear with age.
Overall, she says, everything in the body "dulls." She says aging health affects people differently; "I've seen 50-year-olds look like they are 80 and 80 year-olds look like they are 50."
Dr. Donnelly says other warning signs that may indicate aging parents need help is if they are unable to manage daily living routines, such as going shopping; the home is disorganized (from what it was when the parents were young); unable to wash clothes or washed clothes remained unfolded; bathroom is a mess; dishes are not cleaned; stove is left on; cigarette burns on clothes or furniture or other places; not keeping themselves clean--dirty hair which appears to have gone unwashed for some time, soiled clothing; not eating or forget to eat; and just basic signs of a disorganized home.
Dementia is a common concern of children caring for their parents. Knowing that memory dulls and deteriorates normally with age, what can caregivers know about the not-so-common signs to look for?
Dr. Donnelly says some view dementia as memory loss, but he is quick to add that it is normal to have some form of memory loss. "Dementia is more than memory loss--it is a syndrome that is more than this cognitive process of impairment," he says, adding that a test of dementia can be made with basic exams. For example, he says if tests show that three of the following five areas are impaired more than that comes with normal aging-- personality (more impulsive; not attending to hygiene; more excitable; bursts of anger; disinterest in matters), language, judgment, memory and doing tasks (not being able to complete normal daily activities, such as grooming, paying bills)--then there may be issues of dementia.
A second area of concern for children caring for aging parents is depression, which Donnelly says is a big issue that can occur with dementia. Of those 65 and older, an estimated 2 million have a depressive illness (a major disorder) and 5 million may have "subsyndromal disorder" or depressive symptoms which do not meet the classification of full diagnostic criteria for a disorder (normal emotional experiences of sadness, passing mood swings).
The difference between normal mood swings and depression is these symptoms tend to be persistent and to interfere significantly with an individual's ability to function. They must be checked immediately.
Again, tests are important, for he says that low levels of vitamin B12 and folic acid (one of the B vitamins) can "mimic these problems." He adds that thyroid tests are also important to test for depression--low thyroid functioning (hypothyroid) can affect the mental state as well.
According to an article in the Journal of Psychopharmacology, (Vol. 19:1, 2005) there is a link between depression and low folate, similarly low folate has been found in patients with alcoholism. Depression may likewise bring about excessive drinking in older adults.
While as a child you might have grown up in a family where parents were social drinkers, or even had a few drinks after work each day, these few drinks in an older person can cause serious health problems and can magnify some of the more routine aggravations that are part of getting old.
"Alcohol seems to have an exaggerated affect on older adults," says Dr. Donnelly. Even though dad or mom may say 'well, I've always drunk this much,' Dr. Donnelly says the alcohol does not metabolize in the body as quickly as it did when mom and day were younger.
"It has an augmented effect on the nervous system," he says. "Older adults can become more impaired than younger people."
It is estimated from studies that when a 60-year-old person and a 20-year-old person consume the same amount of alcohol, the older person's blood-alcohol level is 20 percent higher than a younger person's. A 90-year-old person's level may have a blood-alcohol level that is 50% higher.
The main point here is that for older adults, just a small amount of alcohol may intensify problems that parents may have: poor appetite; instability when walking, thus falling often; confusion; incontinence, insomnia; and depression.
Also, alcohol may also make a person more susceptible to colds, infections and other illnesses. Moreover, if the senior is taking medication--even over the counter meds, the two can be a dangerous mix.
Heavy drinking is a serious matter with the aging. Besides the risks involved for "light" drinkers, heavy drinkers have the risk of liver disease, stroke, immune disorders, hypertension, vitamin deficiency, certain types of cancer and permanent brain damage.
Dr. Donnelly says "when we screen patients, we ask questions about their use of alcohol to see if drinking might be a problem." He adds that research does show that wine can be good for protecting the body's cardiovascular system from heart attacks and stroke--but only two glasses max for men and one for women. He is quick to mention that this can often be a "slippery slope": if one glass is good for health, more is even better . . . Not so.
Drinking often goes undetected in the elderly, especially those who live alone and have infrequent visitors. As Watkins said earlier, it is important that children with aging parents visit them every day to monitor behavior.
Dr. Donnelly adds that if children see their parents' social life affected or changing, if their basic occupational or physical life changes (unexplained falls, blackouts, not taking care of personal hygiene), then there could be an alcohol disorder.
Baby, You Can't Drive That Car
One of the most difficult encounters the aged, and those who care for them, have to deal with is knowing when it is time to stop driving a car. From statistics, it seems seniors do not know when to say when. "Self identity and autonomy are attached to being able to drive," says Dr. Donnelly.
There are no laws in Oklahoma which require routine driver's tests for seniors although there are in other, more progressive states. Drivers aged 75 and older have a 37% higher crash rate than younger drivers, and since they are physically more fragile than younger drivers, seniors are more likely to be injured.
The 65 and older age group is the fastest growing segment of the population; more that 40 million older adults will be licensed drivers by 2020.
Mark Madeja, media spokesperson for AAA says that "driving is a privilege not a right, and we must monitor and respect ourselves, passengers and other motorists we share the road with." Madeja agrees with Dr. Donnelly that there is a real fear among the elderly that their independence will be lost--in many cases having an auto is the very last link to being independent.
Madeja says Tulsa, unfortunately, is not a user-friendly city for seniors, mainly because of the many left turns at intersections and lack of adequate public transportation and walkable neighborhoods.
When driving he says seniors often feel an increased pressure to turn left through an intersection, even when it is not safe to do so. Madeja says senior drivers also have a proclivity to drift into other lanes and have a marked decrease in immediate response time.
Studies have shown that certain characteristics associated with aging impair driving performance: more difficult seeing at night; decrease in cognitive capacity and decision-making abilities decrease; decrease in motor ability.
Dr. Donnelly says as family members, we can take the keys away from an aging parent, but it becomes a very big issue between parents and their adult children. "We as doctors can notify the vehicle office if, from our testing, we can determine if they are not safe to drive." Possible seizures and dementia, the "power of distraction" or not being able to use a good sense of judgment when driving that comes with dementia can adversely affect one's ability to operate a vehicle, he says.
Additionally, many seniors are generally fragile and weak; they suffer from what is called "bradykinesis," a motor disorder, frequently seen in Parkinson's disease, which results from rigidity of muscles and is manifested by slow finger movements and difficulty in fine motor performance.
The brain, says Dr. Donnelly, loses its capacity to regulate all receptors of the body to see how the muscles are doing. "Seniors just do not have the response time, the mobility," says Dr. Donnelly. "There is a brain-to-muscles breakdown, a slowing of movements, a stiffness. The muscles do not have good mobility--there is a rigidity, a 'wooden' expression."
According to the National Center for Injury Prevention and Control, motor vehicle-related deaths and injuries among older adults continue to rise. During 1990-1997, the number of deaths rose 14% and the number of nonfatal injuries climbed 19%. During 2002, most traffic fatalities involving older drivers occurred during the daytime (81%) and on weekdays (72%); 75% of the crashes involved another vehicle.
AAA has many resources for senior drivers to assist them with their driving skills. "We don't want to restrict their driving," says Madeja, but we do want to keep people driving safely as long as they can. We want to be proactive."
One of the measurement tools AAA has developed is an interactive DVD that looks at physical, mental and visual driving skills in eight functional areas that are the strongest indicators of accidents among older drivers. "Roadwise Review is a driving check-up much the same as a medical check-up," says Madeja.
This tool, he says, can help identify potential weak spots and give senior drivers options for strengthening those areas. The program is operated on a computer and is very user-friendly even for those with little computer experience.
Each person's results are compared to scores of thousands of drivers 55 and older who completed the same test in a controlled, scientific study. This DVD program is available through AAA for $12.95 for non-members and $9.95 for AAA members.
Dr. Donnelly says there is "not enough done to take care of our aging population. It does not have to be about 'decline.' We want to support their independence as much as possible, which can happen," he says, "by linking up with home health services." Many people age well when supported with preventative health care, such as regular exercise, blood pressure tests, cholesterol checks, vaccines (flu shots), tetanus shots, and the new vaccine for shingles.
"This new vaccine should be given to people over 60 years old. There is an 85% protection rate with it." He says everyone who has had chicken pox has the virus in their nerve cells adjacent to the spinal cord that may cause shingles. The hives of shingles live dormantly until the body is under severe stress.
"If I die before I wake . . ."
One of the most important things families need to consider, says Dr. Donnelly, is discussing the idea of advance directives and living wills for their aging parents. He strongly encourages families to discuss this before a health crisis happens--he says it is something we avoid talking about because a discussion on death is a difficult subject, but a necessary one to talk among family members.
"Family members often end up fighting with one another when an end of life decision has to be made," he says. "It becomes a very sad, divisive time when it should be a time of coming together.
"End of life issues can be a real loving time or it can be a time of tearing families apart. People have a right to make their end-of-life decisions, and the best time is when they have the judgment to do it. The family then can be assured that the decision reflects their own opinion, their wishes."
Many resources are available for adults assisting their aging parents. Here are a few to begin: How to Care for Aging Parents, by Virginia Morris; A Catholic Guide to Caring for Your Aging Parent, by Monica Dodds; The Eldercare Handbook: Difficult Choices, Compassionate Solutions; and Caring for Your Parents: The Complete AARP Guide, by Hugh Delehanty & Elinor Ginzler; seniorline.org; CAPS (Children of Aging Parents)caps4caregivers.org. (a nonprofit, charitable organization whose mission is to assist caregivers of the elderly); sanwichgeneration.com; familycaregiving101.org
American Automobile Association (AAA) has many resources helping the senior driver, such as brochures titled "Straight Talk for Mature Drivers"; How to Help an Older Driver: A Guide for Planning Safe Transportation; and the aforementioned Roadwise, a senior mobility self-assessment tool (DVD) which tests driving ability in the comfort of one's home.
Watkins says "our roles do reverse when parents get older. The main thing is that we keep in touch with them, so we can see and observe these changes in order to know how to care for them in old age." Dr. Donnelly says it is important for family members to gather together in one room to talk over all the issues facing the aging parents.
"A whole structure needs to be in place," he recommends. He adds that the trend these days is for kids to take in their aging parents. This, he says, is an innate response not to abandon a loved one. Yet, "sometimes taking in a loved one exceeds their ability to care of them, such as is a parent has suffered a stroke or has severe dementia.
"The impact on the family to care for their aging parents must be considered. That is always a danger. Children feel guilty or feel that they are letting their parents down if they do not personally bring them into their home. This is a very noble act to do," he says.
In the final analysis, through all the planning, discussing, heartache and pain in wondering how to deal with aging parents, it is important to remember there is no one correct way or incorrect way to deal with aging parents: every family, every situation is different.
In generosity and love, taking care of the aging is an act of mercy and charity that may seem to a burden too hard to bear, but the strength will come--either through family support or social service support--to deal with each situation.
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