Glorifying God by fulfilling your own unique purposes through the never-ending
action of acquiring, using, and sharing diverse resources.
Care Giving for Aging Parents/Spouses
“Time is his enemy. His view of time, and of change, has become that of most elderly people: he hates change, since for him – for his body – any change is for the worse. And if there is to be change, then he wants it to happen quickly, so it does not use up too much of the time remaining to him.” Susan Sontag
“At my age one’s go to be sincere. Lying is too much effort.” Albert Camus
“Wrinkles should merely indicate where the smiles have been.” Mark Twain
“You have Receding Birthday Disorder.” Dr. Peterson
Increasing life expectancies have resulted in the accompanying phenomenon of more families needing to deal with aging issues of their most senior family members. It will become increasingly common for a family to have four or five currently living generations. This lesson deals with many issues having to do with aging parents and spouses. Another lesson deals with grandchildren. Far from being alone or being a pioneer in your problems, many others have probably faced similar situations and many resources are available to help you. Accessing resources and information is usually an important early step to take. For that reason, please refer to the additional resources listed at the end of this lesson and other Practicing Significance Lessons such as: Life Insurance and Annuities, Estate Planning, Aging – Mental Issues, Aging – Physical Issues, and Volunteering.
General Ideas and Statements
This subject is more complex than virtually any other. Aging occurs so gradually that problems are often not clear-cut or easy to recognize. Complexities arise because of emotions, facts, lack of facts, perceptions, family relations, financial restrictions, governmental regulations, and a host of other factors. However, we can all benefit by being aware of certain general ideas and statements, such as:
· We can have many positive benefits from having aging parents. Many of us have found great benefit by including aging parents in our processes of raising children, making decisions, passing judgments, mentoring, passing information, and being friends and companions. Some of these benefits may be reduced if close relationships are not formed and maintained before problems arise. However, the challenges of elder care include: job-family conflict, burn-out, old and new family tensions, loss of sleep, and disruption of life patterns. In fact, when an elderly parent moves in there is often a significant increase in marital conflict.
· Much information is available to deal with most of the problems we will incur. When faced with difficult aging issues many of us perceive that we are the only ones experiencing the situation. In fact, there is a wealth of information available from many sources written by people who faced similar situations. It would be to our benefit to access these sources of books, Internet, nonprofit organizations, governmental agencies, or experiences of our peers and their friends. We are limited only by our imaginations, willingness to search, and amount of questions we explore. At the end of this lesson is a very brief list of some resources to access. Through these resources you will find an unlimited number of resources available. However, since you will find that accessing much of this information is very computer based, be prepared to spend time on the Internet. It will be very helpful if you can involve your parents and family in the process.
· Once you have accessed all sources and prayed, make your decisions without regret or guilt. You will not have enough energy to perform as needed if you spend any feeling guilt.
· You will likely have to be concerned about the lives of your family members for four or five generations. It is unlikely that you will be able to concentrate all of your efforts for a long period of time on any of the generations, including aging parents. Therefore, you will have to allocate your energy, financial resources, care and thoughts among all of your family members. Know ahead of time that there will not be enough of you to go around. It may help if you can involve as many family members as possible. Remember to refer to 3 above.
· Under certain circumstances, you may be able to have some tax deductions for medical expenses or even exemption deductions if you are the primary caretaker of an elderly parent or relative.
· Remember the old proverb, “Treat your parents as you will want to be treated by your children…someday you will.”
The one thing that becomes apparent very quickly is that all of our situations are different and that easy answers may not be readily available. As an example, I am only 54 years old, and have already helped with a grandmother with Alzheimer’s disease, a grandfather who lived to be 99 years old, a father who was disabled by neuropathy and a stroke and was later healed, and a mother who carries a two-page list of past major operations and illnesses. Through these events and others, I have found that problems are best dealt with early and may often be greatly mitigated if anticipated.
Dealing with the Idea of Aging
It seems like we never get used to the idea of aging. Whether a pimply teenager, a forty year-old, a newly retired sixty-five year-old, or a ninety-nine year old great-grandfather, none of us ever get used to getting older. Like many of my friends, I can’t always correlate the twenty-five year old inside of my mind with my fifty-four year old knees and bald head. We seem to always feel much younger than we look. Maybe that’s why we seldom prepare well enough to be old. This situation is not helped by our society where youth is revered and admired and aging seems to have no apparent upside. The situation tends to get even tougher when our mental abilities start to diminish and our understanding of the world doesn’t evolve as fast as the world changes. Virtually all middle-aged people feel somewhat bewildered about the rapidly changing world, so it is understandable that older people find it even harder to live on a daily basis.
We may be concerned about overreacting or being intrusive, so most of us wait until signs of deterioration can’t be ignored. Obvious red flags are: change in appearance or weight, moldy food in the refrigerator, unopened mail, or urine smells. Less obvious red flags are irritability, depression, and changes in personal habits. At some point, we have to take action if needed. However, here are some common traits that we tend to have as we age:
· We think we can take care of ourselves. We might need a “little” help, but we want to take care of ourselves as much as possible. It’s the definition of “little” that can cause so many problems.
· We think we can still drive well enough. Independence in America is greatly based on the ability to drive, so when we give up driving, we are giving up a lot of independence.
· We tend to lose contact with those around us. Our children and grandchildren get wrapped up in their own activities, our close friends move or even die, and our ability to meet new friends diminishes without a great deal of effort. As we feel this happening, some of us grasp for any contact while others withdraw even further.
· We feel younger than we look. This tends to happen even more when illnesses are involved.
· We resist the trend from being a parent to being a dependent. We get especially frantic as we see this trend impacting many of the relationships among the many generations and branches of our family. No matter how gentle our children are with the situation, we still resent our increasing helplessness.
· We have common fears with our friends. These friends are centered on situations which cause us to be more dependent, such as disease, injury, and financial setbacks. Some of these fears cause us to isolate ourselves even more.
Mental Effects on Caregivers
A growing number of caregivers to the elderly find themselves struggling to manage emotions they wish they didn’t have. The stress from care giving can be numbing. Whether you are a young caregiver or an elderly caregiver for a spouse, the unwanted emotions of depression, anger and frustration can be overwhelming. These are amplified when the caregiver is physically exhausted, financially stressed, or lonely. If emotional issues are taking a toll, contact some national programs in your area (such as the Alzheimer’s Association) and ask for information about caregiver training. This topic is becoming more researched and information is becoming more available. As with other topics concerning the aging process, don’t feel guilty for having feelings which are normal. Instead, try to access the resources which can help you.
Throughout our lives we see the continuing fact that having more money gives you more options. That fact continues to be true with our aging parents, with one exception that will be noted later. Some options can be opened with enough work and creativity, but many options are available only if the bills can be paid.
Surprisingly, the first step in working within our health care system is to make sure that adequate estate planning has been done. Most parents of any age are reluctant to include their children in estate planning for a variety of very valid reasons. Therefore, it may be necessary to make sure adequate estate planning has been accomplished without really knowing any details. It is especially important to have a living will, durable health care power of attorney, and general power of attorney. See the Practicing Significance lesson on estate planning for a start, then seek a qualified attorney, preferably one who specializes in elder law.
The next step is to acquire a thorough understanding of all aspects of health care. This process begins with knowing the government programs which may be available. Knowing the complex rules intimately will be important, so accessing the Additional Resources at the end of this lesson will someday be important. Learning the ever-changing rules and completing paperwork will be incredibly complex and energy sapping, but not doing so may be catastrophic. Some specific programs may be available in your specific circumstance, such as a VA Health Care Benefits package for certain veterans of the armed services who are enrolled. Knowing these special programs will be very important. For the American population in general, the programs that are typically available are:
· Medicare. Medicare is a federal health insurance program for three groups of people: those persons 65 years of age and over, certain disabled persons, and certain people with end-stage kidney disease. There are very specific enrollment periods for Medicare that must not be missed without incurring the wrath of the bureaucrats! There are two parts to Medicare: Part A is the mandatory hospital coverage and some home health care coverage. Premiums are deducted from the Social Security payments, but there are some deductibles; Part B is the medical insurance for doctors’ and lab services, etc. which currently has a deductible of $100 plus 20% of the bills. Part B is optional, but almost everybody should take this option unless they have other coverage. In order to pay the deductible, most people find they should buy a Medi-Gap Policy. As with the other aspects of healthcare, buying this policy is complex and has certain very specific enrollment periods which should not be missed. Medicare only covers certain levels of costs. If the service providers do not accept these amounts by “taking assignment”, you may be liable for a significant amount of excess cost. Know ahead of time if they do so. In order to help mitigate this problem some people find it advantageous to join an HMO or the new Private-fee-for-service plans. All of these “simple” ideas are discussed in great detail at the website www.medicare.gov. In addition, starting June,2004, drug cards became available for seniors which could help them lower prescription drug costs. In order to help sort through the choices, call 1-800-MEDICARE or access www.medicare.gov.
· In 2003, about 10% of the nation’s 41 million Medicare beneficiaries were enrolled in private Medicare Advantage plans, and the government is trying to make them more popular. In general, the private plans cover different things and have slightly less cost, but are less flexible and may not be available in rural areas. For help in making the choice, call the State Health Insurance Counseling and Assistance Program in your area.
· Medicaid is a health insurance program run by the states for people living at or below poverty. Many people who qualify for Medicaid are also eligible for the federal government’s Supplemental Security Insurance program (SSI) or programs which may help pay Medicare premiums (QMB or SLMB). Many doctors do not accept Medicaid patients because of the low reimbursement rates. This is the one program where having less money may give you more options. Since this program has very strict income and asset tests, many elderly qualify after a period of time of spending all of their assets for healthcare, and many qualify if they and their families are creative about not having assets or income prior to needing Medicaid.
After learning about government programs, certain private programs may be critical to maintaining the best possible situation for your family. Knowing how these programs interact with the government programs will be very important.
· Health Insurance. In addition to the Medicare HMO’s above, it is possible that your parents may have access to additional health insurance from a previous employer.
· Long-Term Care Insurance. This type of insurance is something to seriously consider especially if in the age group from the 50’s to the 70’s. As with all insurance, the purpose is to protect against a major loss that cannot be afforded. Premiums are a bit high and are based primarily on age, the waiting period before benefits kick in, the amount of benefits, and how many years of coverage you choose. Long-term care insurance does not have unlimited coverage. Coverage may also include one or more of the following: nursing home care, in-home care, respite care, and/or hospice care. As with all other insurance policies, the fine print is all-important, especially with regard to certain diseases such as Alzheimer’s. It would be best to get quotes from several companies and have an expert compare them…it will be worth the effort. As always, choose a very financially strong insurance company since you may not need them for twenty or thirty years. See the Practicing Significance lesson on Other Insurance for additional information.
In addition to taking advantage of government programs and insurance policies there are many ways to save money concerning health care. These include:
· Taking flu shots. These are often given free or at very reduced rates for seniors.
· Take advantage of senior discounts. These are often offered at the most unlikely places, but you may have to ask. Joining AARP or AAA may help get discounts.
· Reduce costs by using generic drugs, renting medical equipment, buying second-hand medical equipment, and taking advantage of all of the volunteer services in the community.
· Reduce the chances of falling or home injuries by using nightlights and handrails, and eliminating or controlling clutter, pets, and slick rugs or floors.
· Try to prevent vision problems which can be avoided. Contact EyeCare America at 1-800-222-3937 or www.eyeamerica.org; your local Lions Club chapter or www.lionsclubs.org; or the Lenscrafters Gift of Sight program at www.lenscrafters.com.
After healthcare, the choice of housing is usually the next biggest issue. The following list gives some of the basic information about the usual choices:
1) The housing option of choice for most seniors is their own house. Most people who own a house prefer staying there as long as possible, and then even longer. It typically becomes a race against time which is influenced by such things as:
a) The style of the house and the ability to be safe and comfortable both inside and outside. It would be well worthwhile to have an expert or a social service member do a survey of the house to recommend or do modifications. Eventually, it may become too much of a problem just to maintain the house. Further, the cost of keeping a house may outstrip the financial resources of the family.
b) If the persons can feed, bathe, clothe, medicate, and transport themselves. In some cases this can be mitigated if social services are readily available and affordable. Knowing the cost and availability of these services may be critical in allowing the maximum period of living in a house. As we age, most of us far underestimate the amount of help we need. Your parents do and you will, too. However, do not discount the fact that they may be happily willing to trade a lower quality of life for the right to live in their house.
c) Sometimes adults can live in their houses much longer if certain modifications are made. One such modification is adding an elevator. Elevators are becoming much cheaper and better designed than ever before. Adding an elevator may be much cheaper than changing houses.
d) An idea which is gaining in popularity is having a house mate move in with an aging parent. Although this may inadvertently cause more problems than it solves, it may allow a sharing of costs and chores and increase the safety of your parent.
e) There is a growing business to assist people in living in their homes. One franchise company is called Home Instead Senior Care which provides non-medical care such as helping with shopping, washing, and meal preparation. Another is Visiting Angels Living Assistance Services.
f) Another growing industry is providing technology that monitors the health and safety of a home’s occupant. These monitors include sensors placed around the house which monitor activity, body function monitors, and even video cameras which can be accessed from the Internet (granny cams!).
g) Geriatric Care Managers are professionals who specialize in assisting older people and their families in meeting long-term care arrangements. Get references at www.caremanager.org.
2) Live with a relative. This choice has a host of complexities which include all of the above. Just because a relative is willing to keep an aging parent doesn’t mean that it is the proper thing to do. Referring to the General Statements at the beginning of this lesson, you may be partially responsible for many generations of a family. Choice may not be easy when it comes to fulfilling conflicting desires and responsibilities. A national program that helps establish community programs providing volunteer care for neighbors with long-term health needs is Faith In Action, 877-324-8411, www.FaithInAction.org.
3) Senior Apartments. Many communities have one or more complexes dedicated to renting solely to seniors. These apartments are designed for comfortable and safe living, for increased social activity, and eliminating maintenance issues. Having seniors in one area allows for social services to be more convenient and available.
4) ECHO housing. Elder Cottage Housing Opportunity structures are small modular homes about the size of a garage which are designed for senior living. These can be placed temporarily on or near a home of a relative (assuming zoning issues can be overcome). These allow privacy and independence at a minimum cost.
5) Foster care. If the parent doesn’t need medical care, a foster home might be appropriate. In a foster situation a family offers their services to care for a senior for a monthly fee. Although you will need to check references and find a way to monitor the situation, foster care could work well in many situations.
6) Continuing Care Retirement Communities. Although expensive, these communities offer a fabulous alternative for many people. These communities are like small towns which provide virtually all necessary and recreational services for senior living. The living facilities include houses, apartments, assisted living buildings, and nursing homes. They are meant to allow any senior to move in at any stage in their life and maximize their remaining years based on whatever physical and mental capacity they have. Moves from one type of facility to another are relatively painless and benign since that is the norm for the community. Unfortunately the entry costs and monthly fees can be more than many people can afford. Due to the contract commitments involved, it would be helpful to check out the community’s financial solvency and accreditation.
7) Assisted Living. Assisted Living facilities come in many different “flavors”. In general, these are meant to be an intermediate step between independent living and nursing home care. In order to maximize the use of the facilities, it is best if you can match the services offered to the needs of the person involved. This can be a bit difficult since the needs of the person will likely increase with time. Fortunately, the quality of assisted living services has increased dramatically over the past ten years. For both these facilities and nursing homes, it would be helpful to access some of the attached Additional Resources and develop a checklist to evaluate your parent and the available facilities, as well as develop a strategy for paying for the services and taking advantages of the services offered.
8) Nursing homes. Nursing homes offer skilled nursing care, rehabilitation, medical services, protective supervision, and assistance with the tasks of daily living. Most of the residents have physical and/or mental impairments that require a fully supervised environment. A physician usually assists in making the determination that a person requires a nursing home. Nursing homes are usually a choice of last resort for both the patient and the family. Unfortunately the costs of a nursing home are significant, (an average of $30,000 per year in 2004) while health insurance or Medicare rarely pays any costs, and Medicaid pays only for qualified low-income and low-asset people (about half of all nursing home residents qualify or find a way to quickly qualify). Therefore, if you don’t qualify for Medicaid or have insurance that covers the cost, you must find a way to pay yourself, as do about half of the nursing home residents. As noted above, it would be helpful to access some of the attached Additional Resources and develop a checklist to evaluate your parent and the available facilities, as well as develop a strategy for paying for the services and taking advantages of the services offered.
Many American refuse to believe that death is just a normal, final part of life. Dr. Kubler-Ross says that when faced with death we go through the five stages of: denial, anger, bargaining, depression, and acceptance. Although the patient goes through these stages, many family members and friends will also go through some of the stages, too. Sometime during the process, if it lasts long enough, we will be faced with the realities of things such as: choosing hospice care, choosing conditions having or not having extensive care, etc. Again, learning about the process from the Additional Resources will make it much easier. For example, researchers find that a positive end-of-life experience includes some or all of: prevention of pain, inclusion in decisions regarding treatments, knowledge of what to expect as death approaches, discussions with family members about meaning and faith, discussions regarding past contributions to the family and society, and to be treated as a person, not as a disease. Also, see the Practicing Significance lesson on Planning for the Inevitable.
Mental Effects on Caregivers
A growing number of caregivers to the elderly find themselves struggling to manage emotions they wish they didn’t have. The stress from care giving can be numbing. Whether you are a young caregiver or an elderly caregiver for a spouse, the unwanted emotions of depression, anger and frustration can be overwhelming. These are amplified when the caregiver is physically exhausted, financially stressed, or lonely. If emotional issues are taking a toll, contact some national programs in your area (such as the Alzheimer’s Association) and ask for information about caregiver training. This topic is becoming more researched and information is becoming more available. As with other topics concerning the aging process, don’t feel guilty for having feelings which are normal. Instead, try to access the resources which can help you. See the Practicing Significance lesson Aging – Mental Considerations.
Increasing life expectancies have resulted in the accompanying phenomenon of more families needing to deal with aging issues of their most senior family members. It will become increasingly common for a family to have four or five currently living generations. Fortunately our society is recognizing this phenomenon and it is becoming easier to accommodate the needs of our parents and our other family members.
The Complete Idiot’s Guide to Caring For Aging Parents, by Linda Rhodes. This inexpensive book references a tremendous number of state and national government, commercial, and nonprofit sources. In addition, a wide range of issues are addressed. Highly recommended.
Mayo Clinic on Healthy Aging, by Mayo Clinic
Complete Guide to Caring for Aging Loved Ones, by Focus on the Family Physicians Resource Council
How to Care for Aging Parents, by Virginia Morris
American Association of Retired Persons (AARP) 1-800-424-3410 www.aarp.org
Senior Law www.seniorlaw.com
National Academy of Elder Law Attorneys www.naela.org
Access America for Seniors www.seniors.gov
State Health Insurance Assistance Program.
Home Instead Senior Care 480-991-3959 www.homeinstead.com
Faith In Action 877-324-8111 www.FaithInAction.org
National Family Caregivers Association www.nfcacares.org
Elder Care Locator at 800-677-1116
Senior Careguiders www.careguiders.com