The Process of Long Term Care Planning
by Thomas Day

The Seven Steps of the Planning Process

Understanding the natural progression of long-term care and the resources available to help can be an invaluable asset to a family or spouse who are currently providing care or someday in the future, may eventually have to provide help for a loved one. We call this process long term care planning. It involves:

This chapter gives us an overview of the process of planning and we will discuss this concept along with a brief examination of the other six steps of the planning process. In addition we devote entire chapters on this site to flesh out and help the reader understand these remaining 6 steps in detail.


Step 1, Understanding the Process of Planning

The Importance of Planning

We spend our lives making plans and preparing for future events. From the beginning we plan and work towards education, a career, marriage and a family. We work hard and save, invest and build our assets. We insure to protect our home, automobiles, health and medical needs.

Retirement age comes and our plan is finally in place. Finances and time have come together to allow us to enjoy the elder years of life. This is where the planning ends. But life does not end at retirement. There is a portion of life that the majority of us will live through after the retirement years called eldercare.

Very few people plan for this part of their life and it is as important if not more important to plan for it. If we don't, we are leaving our last years in someone else's hands. As much as children love us and mean to do right by us, they cannot possibly know what we want if they are not told.

Ruby, age 80, lost her husband. She had cared for him at home after his stroke. Understandably, she felt lost and depressed after his death. An inner ear infection caused Ruby to lose her balance and fall, breaking her hip. While she was in the hospital recuperating from surgery, Ruby's children were deciding her future.

Concerned for her health and safety they moved some of her belongings to an assisted care facility. Upon Ruby's release from the hospital she was taken to her new home at the facility. Between pain medication and the unfamiliar surroundings, Ruby never was herself again. She spent her last days asking what had happened to her home and items in it that meant so much to her. Though her children had her best interest at heart, they did not know how Ruby wanted to spend her elder days.

An article on the AARP website titled, "Talking About Independent Living" states,

"Research has shown that, as people age, they prefer to continue living independently, preferably in their own homes. While adult children often worry about their parent's situation, it can be difficult to know if parents really need, or want, help from their children."

The article continues to suggest ways for children to talk to their parents about, health, finances, driving, taking medication and living alone.

Children and parents should talk about all these things, except the parents should be the instigators and set the plan for the children to follow. What do you want your children, or friends to do in your behalf? When it comes time for them to help, you may not be physically or mentally able to execute your wishes. This is where your long term care plan comes into effect.

Martha and John drew up a plan for their elder care. It was a plan that would give them both the quality care and dignity they wanted. If John or Martha became unable to care for himself or herself, the plan would enable the healthy spouse to oversee the care without jeopardizing their health or lifestyle. Their long term care plan included a list of state and local services they could draw on for support. What was available to them with Medicare, Medicaid and their health insurance policy was listed in their plan. They added long term care insurance to cover the cost of in home care, so they could stay in their own home.

John added a trust and will, a living will, a medical power of attorney and a springing durable power of attorney so the family would have everything arranged for care and end-of-life.

They also designated their oldest child, Michael, to be their personal care coordinator and make sure their plan would be implemented when the time came. They asked another child, Melissa, to be a backup to her brother. Most importantly they provided checklists for their children to follow in the event long-term care became necessary in the future. A copy of a good long-term care planning guide book was also provided to each child and they were told to read it and use it as a future reference.

Examples of Long Term Care Planning

Consider the following example:

Mary is trying to prepare her son to avoid the mistakes she made with her husband Bill. Five years ago, Bill lost his ability to communicate due to Alzheimer's. He also suffered from heart disease and diabetes. As his caregiver, Mary was never quite sure she was making the right choices about his long term care and medical treatment. Eventually Bill needed life support and Mary agonized over how Bill really would have wanted his life to end since they had never discussed it. Bill died last year. So many things were left undone regarding his care.

Mary has decided to plan for long term care and medical treatment before it happens. She has designated her son as her personal care coordinator. She has given him written instructions regarding different care scenarios and how to prepare for care giving. He also has copies of her will and trusts as well as other legal care documents. She has provided him an extensive source of long term care information as well as a list of her personal financial resources. Mary has implemented the financial solutions to pay for her care. And finally, she has provided her son with a detailed list of government and private long term care service providers.

By planning in advance for long term care, Mary has removed the guilt that loved ones feel in making care choices for her. She has researched and given direction on the types of care she desires, she has given direction and guidance to would-be caregivers and lastly she has planned for the means to pay for that care.

Another example:

Alice , age 54, and Frank, age 56, are the parents of three grown children. They are also the proud grandparents of 4 beautiful and perfect grandchildren. Their married son, the oldest, lives in Baltimore , Maryland , clear across the country. Their next, an unmarried daughter lives in Van Nuys , California , about 600 miles away. Their youngest, Andrea, is married with one child and lives about 40 miles away. Andrea works part-time as a secretary and her husband manages the computer systems for a small company.

Alice is an educator and in 6 more years she will be eligible for a comfortable retirement with her state retirement plan. She has also managed to put away a small nest egg with her 401(k) plan and a tax-sheltered annuity. Frank is self-employed and other than Social Security, he will have no other retirement income or savings.

Alice went through long term care with both of her parents. Her mother died 3 years ago and her father died 5 years ago. Alice was the only one of her brothers and sisters willing or able to care for her parents. Between trying to maintain a very demanding profession and provide care support to her single mother in the morning and evening and on weekends, it was all she could do to avoid a nervous breakdown. At the same time, her youngest daughter, Andrea, was a senior in high school and although, Andrea was mostly self-sufficient, Alice still feels the guilt of not being there for Andrea because of the burden in caring for her parents. Alice 's career also suffered as she was unable to attend continuing education courses to meet career ladder thresholds and she had to opt out of extra activities at school. Her principal understood but she wasn't sure about her standing with the rest of the staff and administration.

Alice has persuaded Frank to set up a long term care plan for themselves to avoid the mistakes made with her parents. They recently purchased long term care insurance policies that combined with their incomes will allow them to maintain their home and provide enough to pay for professional help to keep them in the home. If for some reason they can't stay at home, the insurance will pay for institutional care as well. If one of them dies and the other goes to live with Andrea, the insurance will allow their daughter to oversee professional in-home care and respite care and not be tied down as her mother was with care giving.

Alice and Frank want their children to have their house and they have set up a will and trust to provide for an orderly distribution. Alice has made a list of who-gets-what of her keepsakes and has listed the things she wants her grandchildren to remember their grandparents by. They have asked Andrea to be their personal care coordinator and have given her instructions regarding care, financial resources, community resources and legal documents. Andrea knows where all of the information is kept and she has copies of the important legal documents including powers of attorney and living wills.

Because Alice and Frank have put everything in order, they feel they will not be the burden on Andrea and her family that Alice 's parents caused for her and her family.

Understanding the Role of Informal and Formal Caregivers in the Planning Process

Informal caregivers are family, friends or volunteers who provide care for a loved one. Informal caregivers are rarely paid directly for their services. They may receive indirect payment through sharing a loved one's income or assets. Although informal caregivers may provide services in a facility, in most cases they are providers of care in the home. The chart below indicates that 80% of all informal caregivers are a spouse, a daughter or daughter-in-law or a son or son-in-law. The other 20% of care may be provided by friends, volunteers, siblings, grandchildren or nieces and nephews.


Source: 1999 National Long-Term Care Survey


The financial impact on informal caregivers depends on who the informal caregiver is. For a spouse there is typically no financial cost since income and assets will be the same with or without a need for care. However, if a spouse offering informal care is employed and has to quit his or her job to provide care there is a significant impact on that family's finances. Despite the fact that there may be no significant financial impact on a spouse caring for the other spouse at home, there can be significant impact on the emotional and physical health of the caregiving spouse. Because of the strain and burnout often associated with caregiving it may be that the healthy spouse may become unhealthy and need long-term care as well. And in some cases healthy spouses have succumbed to the pressures of caregiving and died prematurely, well before their care recipients have died.

A caregiver other than a spouse, in many cases, may have to suffer financial sacrifice in order to provide long term care for a parent, an aunt or uncle or a grandparent. In most cases this means giving up or cutting back on paid employment in order to provide the care. This financial sacrifice is often offset by the fact that the non-spouse caregiver may move in with the care recipient and receive free room and board. Or it is very common for the care recipient to move into the home of the caregiver. In this case the caregiver is reimbursed by having his or her loved ones provide their income to help with the cost of care in the home. If full-time employment needs to be sacrificed, this extra income from a loved one may help to compensate for the loss of earned income. And as has been mentioned, the stress of caregiving can often be much more detrimental than the financial loss.

Formal caregivers are typically paid providers but they may also be volunteers from a government or nonprofit organization. Where care is being provided in the home there is typically a mix of formal and informal care provided. And the trend is towards using more formal care since, unlike the past, more informal caregivers are employed and choose to remain employed and juggle the responsibility of caregiving with maintaining a household and a job. These added responsibilities often make it necessary to hire non-medical home care aides to provide supervision and help when the primary caregiver cannot be present. Or as adult day care becomes more common, caregivers may pay for this form of service to get rest or to allow for maintaining some employment.

When care is no longer possible in the home, then formal caregivers come into play on a full-time basis. This may be in the form of a congregate living arrangement, assisted living, a continuing care retirement community or a nursing home. It is at this point that long-term care can have a significant impact on the finances of the care recipient and a healthy spouse living at home. Other living arrangements are quite expensive and the cost for maintaining a spouse in such a living arrangement may rob a healthy spouse at home of an adequate standard of living. It's quite possible the healthy spouse may end up with food stamps and subsidized housing where, before the need for a care facility, this may not have been the case.

Or it is more often the case that the couple recognizes this dilemma of splitting living arrangements in two locations and an attempt will be made to keep the spouse needing care at home as long as possible. This may help with the finances but often results in destroying the physical and emotional health of the caregiver by creating a situation where the caregiver has difficulty coping with the responsibilities and physical demands. Adequate long-term care planning, well in advance of the need for care, can anticipate and deal with many of the problems outlined above.

Understanding the Progression of Care and the Need for Informal or Formal Caregivers

The chart below illustrates the relationship of informal care to formal care. As care needs increase, both in the number of hours required and in the number or intensity of activities requiring help, there is a greater need for the services of formal caregivers. Unfortunately, many informal caregivers become so focused on their task they don't realize they are getting in over their heads and they have reached the point where some or complete formal caregiving is necessary. Or the informal caregiver may recognize the need for paid, professional help but does not know where to get the money to pay for it.

It is the job of a care manager or a financial adviser or an attorney to recognize this need with the client caregiver and provide the necessary counsel to protect the caregiver from overload. The advisor can also likely find a source for paying for formal care that the caregiver may not be aware of.

An overloaded caregiver is likely to develop depression and/or physical ailments and could end up needing long-term care as well. Or the consequences of not being able to cope with caregiving might even result in an early death for the caregiver.



Intermittent Care

This would require the occasional attention of an informal caregiver but there may also be a medical condition that may require expertise the informal caregiver does not possess. As a general rule most people receiving this kind of care would probably be in their own home and the caregiver would be living or working close by and stop only for occasional visits.

There is, however, a growing trend where the only family caregivers may be living hundreds or thousands of miles away from their loved one. In this case, a care manager would be hired to arrange for the intermittent care for the loved one.

Part Time Care

This could still be furnished by an informal caregiver assuming there is no extensive medical condition requiring frequent attention. It is more likely under this scenario the care-recipient and the informal caregiver would be living together. Or with no caregiver available a decision would have to be made whether it would be in the best interest of the care-recipient to receive formal care in the home or to go to a care facility. Oftentimes a care facility can offer a better environment at a lesser cost. On the other hand, many care-recipients prefer to remain in their homes at all costs. And for long distance caregivers, hiring a care manager is still the best option.

Full-Time Care

Full-time care can often be offered by informal caregivers living with the care-recipient. But this arrangement is not always in the interest of the caregiver. Because of the demand on a caregiver's time and attention, this arrangement will often result in the caregiver suffering from severe depression, social isolation and the development of medical ailments. Again, the decision is often dictated by the lack of funds to pay for professional care. But when the need for care has progressed to a full time basis, advisers or family should be looking to implement formal care delivery either in the home or in a facility. As with the other care options above, a care manager could prove invaluable in selecting the setting and the care providers.

Depending on what causes the need for long-term care, a care-recipient could start out at any point on the curve. For instance a stroke, injury or sudden illness may result in the immediate need for part time or full time care. On the other hand the slowly progressing infirmity of old age, the slow onset of dementia or a progressively deteriorating medical condition may only require occasional help; beginning with intermittent care from an informal caregiver but gradually progressing to the need for full time, formal care.

The process of long-term care planning involves the following four principles:

  1. Knowledge Is the Key to Success.
  2. Professional Help Is Crucial in Saving Time, Money and Stress.
  3. When Money is Available For Care, Caregiver Stress Is Reduced And Care Options Are Expanded
  4. Success Is Assured through a Written Agreement with All Parties Involved.


Knowledge Is the Key to Success  
Incorporates Planning Steps 2 and 3

Understanding in advance, care settings and when and why they are appropriate will result in the most satisfactory experience for the caregiver, the care recipient and the family. Understanding how government programs work helps with the final decision-making process.

  • Prior knowledge prevents crisis planning.
  • Prior knowledge will save money.
  • Prior knowledge will save precious time.
  • Prior knowledge will rescue the caregiver.
  • Prior knowledge opens the door to other options.


Professional Help Is Crucial in Saving Time, Money and Stress
Planning Step 4

Long-term care services are complicated and expensive. For the majority of Americans, eldercare is a do-it-yourself process. This approach is wrong. Using professional care advisers is the most cost effective and efficient way to provide help for a loved one. Hiring professional advisers to help with long-term care is no different than using a professional to help with other complex issues. Does do-it-yourself make sense in the following examples?

  • Sam has a 2003 SUV. He decides to purchase the $600 service manual and invest thousands of dollars in test equipment and in special tools to repair the vehicle himself. He feels he will save money by doing this instead of paying for expensive dealer repair services.
  • Sally is involved in a complicated court proceeding. She decides to represent herself and invests countless hours in researching legal documents and reading books on how to represent herself in court.
  • Jim runs a business with 100 employees. He has no experience in accounting or taxes but he decides his accountant and tax person is too expensive and he will invest the time and money in software to do it himself.
  • Grace is a successful and busy professional who has little personal time. She doesn't like the idea of paying an investment adviser to manage her $1 million portfolio. She decides to manage it herself.

There is no doubt that given enough time and money a person could repair his own car, handle a court process alone, research tax laws or spend countless hours doing his own investment research. But most people are smart enough to recognize that the time and the stress involved are not worth it and they hire an expert to help them. And even if a do-it-yourselfer has enough time for research, that person is unlikely to have the experience in handling care situations that a professional long-term care expert would have. Experience only comes from dealing with countless hands-on, caregiving challenges.

A professional care manager should always be involved when the time for long-term care comes. The use of this expert is crucially important in any long-term care plan.

Other useful professionals to consider are an elder law attorney, a long-term care and financial planning specialist and an elder mediator. These experts help design the initial plan and can be just as valuable as a care manager in certain situations when the time for care comes.

Using the expertise of a long-term care professional is likely to result in dollar savings many times larger than the cost of hiring the expert.


When Money is Available For Care, Caregiver
Stress Is Reduced And Care Options Are Expanded

Incorporates Planning steps 5 and 6

Without money to hire professional advice or to provide the most desired care setting, the only option is to rely on Medicaid. This typically means a nursing home. Other limited options are available from Medicaid or from community aging services but they are often inadequate and there are usually waiting lists.

Common Funding Options

  • Long-Term Care Insurance
  • Life Settlement
  • Reverse Mortgage
  • Cashing Out Of a Principal Residence through Sale or Buyback Arrangement
  • Retirement Savings Accounts
  • Life Insurance Arrangements

Common Asset Saving Strategies

  • Medicaid Planning
  • Rearranging Insurance Plans
  • Private Home Care Arrangements
  • Work Closely with Your Doctor
  • Understand the Pricing of Community with Care Arrangements
  • Purchase the Right Long-Term Care Insurance
  • Family Shared Care Commitments
  • Tax Advantage Strategies


Success Is Assured through a Written Agreement with All Parties Involved
Planning step 7

People planning for long-term care must make their wishes known to family or other involved caregivers, they must choose a care advocate, they must provide funding and they should have their legal documents already in place.

No plan is complete without a formal meeting and a written care agreement that is understood, agreed upon and retained by everyone involved. Everyone involved is also given instructions and checklists to follow when the time for care comes. Included are instructions on where to find current resources for long-term care planning steps 2 through 6.


Step 2, Understanding Care Settings

Anticipating the Care Setting

The care setting often goes hand-in-hand with the progression of care commitment curve. As more help is required or as specialized caregivers are needed, the setting may progress from a home to a community housing arrangement such as assisted living or to a nursing home. On the other hand, given enough money to cover the cost of bringing specialists into the home, a care recipient need never leave the home and need never go into another care setting. Such a fortunate individual can experience the serenity and peace of dying at home with loved ones nearby. Planning for long-term care, however, should anticipate all three settings. All too often families are thrown into a caregiving situation with little prior warning and must make decisions based on little knowledge of what care settings and services are available. One major objective of the long-term care planning process is to provide enough information about specialists and care settings so that the family can make informed decisions when the need arises.

Some interesting points to note from the graph below are that about 22% of the entire population over age 65 is receiving some form of long-term care. A recent sample survey commissioned by a national non-medical home care franchise estimates the percent of aged receiving long-term care is even higher at about 25% of that population. It should also be noted from the graph that 80% of all long-term care recipients are in the home or a community setting. Also note the average length of stay for each care setting.


Source: Long Term Care


The Role of Home Care in the Planning Process

The evolution of home care
In the first century of our country's history there was no such thing as nursing homes or assisted living. Society was mostly rural and people lived in their own homes. Families cared for their loved ones at home till death took them. In the latter part of the 1800's because of an increasingly urban society, many urban families were often unable to care for loved ones because of lack of space or because all family members including children were employed six days a week, 12 hours a day. During this period many unfortunate people needing care were housed in County poor houses or in facilities for the mentally ill. Conditions were deplorable. In the early 1900's home visiting nurses started reversing this trend of institutionalizing and allowed many care recipients to remain in their homes. Nursing homes or so-called rest homes were also being built with public donations or government funds. With the advent of Social Security in 1936, a nursing home per diem stipend was included in the Social Security retirement income and this government subsidy spurred the construction of nursing homes all across the country.

By the end of the 1950s it was apparent that Social Security beneficiaries were living longer and that the nursing home subsidy could eventually bankrupt Social Security. But in order to protect the thousands and thousands of existing nursing homes Congress had to find a way to provide a subsidy but remove it as an entitlement under Social Security. In 1965 Medicare and Medicaid were created through an amendment to the Social Security act. Under Medicare, nursing homes were only reimbursed on behalf of Social Security beneficiaries for short-term rehabilitation. Under Medicaid, nursing homes were reimbursed for impoverished disabled Americans and impoverished aged Americans over the age of 65. It has never been the intent of Congress to pay for nursing home care for all Americans. The nursing home entitlement for all aged Americans was now gone.

Over the last 40 years, there has been a gradual change away from the use of nursing homes for long-term care towards the use of home care and community living arrangements that also provide in-house care.

We are seeing a trend towards working conditions like those in urban America in the early 1900's where both husband and wife are working and putting in longer hours. We are also seeing a return of the trend in the early part of the 20th century where outside visitor caregivers are becoming available to replace working caregiver's and allow the elderly to receive long-term care in their homes. In addition there is a significant trend in the past few years for Medicaid and Medicare to pay for long-term care in the home instead of in nursing homes. And as has been mentioned before, given enough money for paid providers or government funding for the same, a person would never have to leave his home to receive long-term care. All services could be received in the home. Adequate long-term care planning or having substantial income can allow this to happen.

We only need to look at wealthy celebrities to recognize this fact. Christopher Reeve, the movie star, was totally disabled but he had enough money to buy care services and remain in his home. President Ronald Reagan suffered from Alzheimer's for many years but received care at his California ranch. He was also wealthy enough to pay for care when needed. Or what about Annette Funicello or Richard Pryor? Income from their movie careers allows them to receive care with their multiple sclerosis at home. We will be willing to bet that Mohammed Ali, who is severely disabled with Parkinson's disease, will probably never see the inside of a care facility, unless he chooses to go there to die. With the proper planning and the money it provides, most of us could remain in our homes to receive long-term care and we would never have to go to an institution or a hospital.

The Popularity of Home Care
Most of those receiving long-term care and most caregivers prefer a home environment. Out of an estimated 8 million older Americans receiving care, about 5.4 million or 67% are in their own home or the home of a family member or friend. Most older people prefer their home over the unfamiliar proposition of living in a care facility. Family or friends attempt to accommodate the wishes of loved ones even though care giving needs might warrant a different environment. Those needing care feel comfortable and secure in familiar surroundings and a home is usually the best setting for that support.

Often the decision to stay in the home is dictated by funds available. It is much cheaper for a wife to care for her husband at home than to pay out $2,000 to $4,000 a month for care in a facility. Likewise, it's much less costly and more loving for a daughter to have her widowed mother move in to the daughter's home than to liquidate mom's assets and put her in a nursing home. Besides, taking care of our parents or spouses is an obligation most of us feel very strongly about.

For many long-term care recipients the home is an ideal environment. These people may be confined to the home but continue to lead active lives engaging in church service, entertaining grandchildren, writing histories, corresponding, pursuing hobbies or doing handwork activities. Their care needs might not be that demanding and might include occasional help with house cleaning and shopping as well as help with getting out of bed, dressing and bathing. Most of the time these people don't need the supervision of a 24/7 caregiver. There are, however, some care situations that make it difficult to provide long-term care in the home.

Please note from the first graph below that a great amount of home care revolves around providing help with activities of daily living. Note from the second graph below that the average care recipient has need for help with multiple activities of daily living. Finally, it should be noted from the second graph that well over half of home care recipients are cognitively impaired. This typically means they need supervision to make sure they are not a danger to themselves or to others. In many cases, this supervision may be required on a 24-hour basis.

It is precisely the ongoing and escalating need for help with activities of daily living or the need for extended supervision that often makes it impossible for a caregiver to provide help in the home. Either the physical demands for help with activities of daily living or the time demand for supervision can overwhelm an informal caregiver. This untenable situation usually leads to finding another care setting for the loved one. On the other hand if there are funds to hire paid providers to come into the home, there would be no need for finding another care setting. By planning for long-term care in advance families can have the funds to keep their loved ones at home. More detailed information on home care can be found in Chapter 3. Details on recognizing costs and providing funding are found in chapter 7.


Source: 1999 National Long-Term Care Survey


Source: 1999 National Long-Term Care Survey


Problems That May Prevent Home Care from Being an Option
Caregivers face many challenges providing care at home. A wife caring for her husband may risk injury trying to move him or help him bathe or use the toilet. Another situation may be the challenge of keeping constant surveillance on a spouse with advanced dementia. Or a son may live 500 miles from his disabled parents and find himself constantly traveling to and from his home, trying to manage a job and his own family as well taking care of the parents. Some caregivers simply don't have the time to watch over loved ones and those needing care are sometimes neglected.

The problems with maintaining home care are mainly due to the inadequacies or lack of resources with informal caregivers, but they may also be caused by incompetent formal caregivers. These problems center on five issues:

  • Inadequate care provided to a loved one
  • Lack of training for caregivers
  • Lack of social stimulation for care recipients
  • Informal caregivers unable to handle the challenge
  • Depression and physical ailments from caregiver burnout

In order to make sure home care is a feasible option and can be sustained for a period of time, caregivers must recognize these problems, deal with them and correct them. The responsibility for recognizing these problems and solving them is another function of the long-term care planning process and the team of specialists and advisers involved.

Inadequate Care Provided to a Loved One

If the caregiver can spend only minimal time in the morning and evening and will be absent the rest of the day, those receiving care quite often become imprisoned by their environment. They receive little or no social stimulus and may spend day after day just sleeping or watching television. They typically get no exercise other than moving to or from the bathroom and often they suffer from poor nutrition and dehydration due to lack of adequate food and fluid intake. Drinking and eating are deliberately avoided to lessen trips to the bathroom or to avoid soiling a diaper. Malnutrition and dehydration often result in poor mental reasoning or stupor, thus contributing to the daily routine of only sitting, sleeping and enduring the TV. This is not a noble way to finish out one's life. And we are doing these people an injustice by keeping them imprisoned in this manner at home. They should either be in a good adult daycare center or in the more stimulating environment of an assisted living facility or the family should sacrifice, spend money and bring in full-time aides to provide more adequate care.

Self-neglect is where the care recipient is not interested enough or is incapable of taking care of his or her own needs. This may mean not eating or drinking enough or not attending to personal hygiene. It may mean allowing garbage to accumulate in the home or having pets that are unattended and leave feces and urine in living spaces. There may be a caregiver involved but for whatever reason the caregiver is not stimulating that person receiving care to take care of him or herself or the home environment. And for whatever reason the caregiver is not providing needed help. Self-neglect with or without a caregiver is actually a form of elder abuse and in some states it is required by law that its existence be reported. A caregiver allowing this to happen could be criminally charged.

Failure to Bring in Help
This is probably the biggest mistake caregivers make. Perhaps in order to save money to use when the loved one is gone or because they think they are "tough" many caregivers will not ask for help. Or it is common for caregivers to become so involved with their loved one that they isolate themselves from others. This isolation makes them reluctant to contact those who can help. Or a child may try to provide care from a long distance away and find it difficult or impossible to do. Regardless of the cause, failure to ask for help or to hire help can have dire consequences on the welfare of the care recipient and the caregiver.

Lack of Training for Caregivers

There is really no excuse for caregivers not to have training in the physical and emotional needs of their care recipient. Help is available from the local area agency on aging and in most cases will cost nothing. Here are some issues caregivers need to consider

  • Proper techniques for lifting and moving to avoid injuries
  • Proper use of bedpans and sanitation
  • Ways to prevent bedsores
  • How to deal with incontinence
  • How to provide proper skin care
  • How to maintain personal hygiene with a disabled person
  • Use of devices, modifications and systems to help with disability
  • How to maintain good oral hygiene and oral health
  • How to avoid yeast infections in older women
  • How to provide emotional and spiritual comfort
  • Knowledge and training on fall prevention
  • How to prevent falls
  • How to provide proper nutrition
  • How to provide foot care and hygiene especially with diabetic patients

Lack of Social and Physical Activity for Care Recipients

Many elderly buy into the notion that they themselves are no longer useful and as a result make little attempt to keep themselves healthy and active. After all, they are getting closer to the end of their lives and have no desire to try new things or to challenge themselves or to eat or exercise properly.

There is a great deal of anecdotal and research evidence that demonstrates older people can learn, can retain memory and can be actively involved in business and in the community. The lack of physical exercise, social involvement and mental stimulation in older Americans often leads to these people losing the ability to use their minds and their bodies. The older person's negative attitude towards aging becomes self-fulfilling.

Many studies show that older people who are physically active have less joint pain, lower blood pressure, less depression, fewer heart attacks and a lower incidence of cancer. Proper nutrition also has the same affect on the aging process; it delays the progression of debilitating illness or disability. Recent research even indicates that weight loss and exercise can reverse the severity of diabetes.

Lack of social stimulation can also lead to poor health. Having an interest in something not only stimulates an older person's mind but also creates a better mental attitude which results often in better health. And there is empirical evidence that using one's brain may prevent dementia in older age. Here are some suggestions that may actually improve the health of the care recipient and give him or her a better quality of life.

  • If it is feasible, provide hobbies.
  • If it is feasible, promote exercise adjusted to the care recipient's ability.
  • Allow the care recipient to care for pets and plants even if he or she suffers from dementia. (Nursing homes have demonstrated that Alzheimer's patients respond well to this therapy.)
  • Provide music or allow the care recipient to sing or play an instrument. (Nursing homes have also shown this helps immensely with dementia patients.)
  • Make the care recipient responsible for his or her own health
  • Allow for interaction with grandchildren or small children. (Another proven therapy)
  • Provide the care recipient with challenging games or puzzles.
  • Encourage the care recipient to read.
  • Provide planned activities for the care recipient.
  • Provide opportunities for volunteer work at home. (Many volunteer organizations can allow disabled folks at home to be involved through their computer and the Internet.)
  • Provide special meals and formal table settings.
  • Try new recipes.

Informal Caregivers Unable to Handle the Challenge

Failure to Recognize the Need for Help
Another situation where the use of home care should be weighed against other alternatives is where a caregiver is in over his or her head and either doesn't recognize it or won't admit it. The care is just too difficult to handle beyond a period of a month or more. Short-term the caregiver can handle it. Long-term, help is needed. A professional caregiver at this point is needed.

Hire a Competent Adviser
We cannot stress enough the importance of using an adviser in a caregiver setting.
A financial planner, care funding specialist or a reverse mortgage specialist may find the funds to pay for professional help to keep a loved one at home. A care manager can guide the family and the caregiver through the maze of long-term care issues. The care manager has been there many times the family is experiencing it for the first time. Understanding the options with long-term care can be overwhelming to someone who does not have a background in this area. An elder law attorney can help iron out legal problems. And an elder mediator can help solve disputes between family members. Having competent advice can make the difference between allowing a loved one to remain in the home or seeking out government welfare assistance.

Admit Defeat
Some caregivers allow the situation to go beyond their control. They have gotten to it a point where depression and fatigue have clouded their judgment. It is extremely important for family members or advisers to recognize this situation and provide counseling for the caregiver. Perhaps at this point any further effort will only be detrimental to the caregiver and the focus shifts from the needs of the care recipient to those needs of the person providing the care. At some point the caregiver will have to admit that he or she can't handle it alone and a better solution must be found.

Depression and Physical Ailments from Caregiver Burnout

Another problem with full-time care at home is the risk of burnout. Care giving can be very stressful and demanding. In the case of a healthy spouse or a child living with the disabled person at home, caregiving can be a 24 hour, 7 day a week commitment. But even for the caregiver not living in the home, looking after a loved-one or friend can consume all of the caregiver's free time.

Surveys and studies consistently show that depression is a major problem with full-time informal caregivers. This is typically brought on by stress and fatigue as well as social isolation from family and friends. If allowed to go on too long, the caregiver can sometimes break down and may end up needing long-term care as well. A typical pattern may unfold as follows:

  • 1 to 18 months--the caregiver is confident, has everything under control and is coping well. Friends and family are lending support.
  • 20 to 36 months--the caregiver is taking medication to sleep and control mood swings. Outside help dwindles away and except for trips to the store or doctor, the caregiver has severed most social contacts. The caregiver feels alone and helpless.
  • 38 to 50 months--Besides needing tranquilizers or antidepressants, the caregiver's physical health is beginning to deteriorate. Lack of focus and sheer fatigue cloud judgment and the caregiver is often unable to make rational decisions or ask for help.

It is at this stage that family or friends need to intercede and find other solutions for care. This may include respite care, hiring home health aides or putting the care recipient in a facility. Without intervention, the caregiver may become a candidate for long-term care as well.

The Role of Community Housing with Care in the Planning Process

Despite the psychological advantage, we have seen that a home may not always be the best place for those receiving care or for the caregiver. And surprisingly, it is becoming more common for people needing care or anticipating care to seek out other living arrangements in preference to the home. The reasons for preferring another living arrangement may be varied but are usually based on issues such as lack of transportation, lack of security in the neighborhood, desire to avoid maintenance and yard upkeep, the need to cash out of a home to provide funds for care or the desire to associate with other elders.

Many care recipients may have a fear of leaving their homes. Agoraphobia affects about 30% of all elderly care recipients. The fear may prevent a person from getting better care and more mental stimulation in another environment. It may even require some counseling from a professional to persuade a person to leave the home. In many cases the family may force this decision upon their loved one resulting in damaged relationships and psychological injury to the loved one. In an attempt to expedite the move due to limited time available from family, cherished possessions may be discarded. Again we cannot stress enough the importance of using a professional in the transition from home to a community setting. The key person in this action is a care manager. Not only can the care manager help the family and care recipient understand the issues of a transition but he or she can also help with the selection of the proper setting. A manager can also make arrangements for moving the loved one and selected belongings. The cost is well worth the trade-off of getting it right.

Community settings with care such as assisted-living, board and care or foster homes may be limited in the amount of help that they can provide with long-term care. This may be a result of limiting licensing requirements or it may be a result of lack of staff. The most common reason for checking out of assisted-living is that more care was necessary. Abandoning a community care arrangement may also be due to a lack of funds. The next step is usually a nursing home.

Where Nursing Homes Fit in the Planning Process

There are at least two reasons why most people need care in a nursing home environment. The first we have discussed in the previous section. The need for care gets to a point where the licensing requirements of an assisted living don't allow for the intensive amount of help needed. Or there's a lack of funds to hire the necessary help to remain in the home. A nursing home is the only other solution. But surprisingly a number of people in nursing homes could be just as well living in a community setting or at home. The reason for these particular people being in a nursing home is due to Medicaid. In most states Medicaid favors nursing home care and there are waiting lists for Medicaid community care waivers or Medicaid home care waivers. Many people who could qualify for other care settings are stuck in a nursing home. Even those who receive the Medicaid waiver may not have a choice in the type of care they receive. It may be in a facility not to their liking or they may receive care from people that are not as competent as they should be. But for those who plan, a nursing home or a Medicaid waiver program need not be the eventual fate of someone needing care.

As a general rule most people do not like the nursing home environment. Newer homes are converting to a friendlier environment with a more homelike setting but the majority of homes offer a hospital environment. It can be an unfriendly and disturbing place. Most people would prefer a different living arrangement but their lack of planning has forced them to rely on Medicaid. Again, we cannot stress the importance of planning ahead. Long-term care planning will allow a person needing care in the future more choices than having to live out the rest of his or her life in a nursing home.


Step 3, Understanding Government Long-Term Care Programs

It is interesting to note that a large majority of the American public still believes that the government will provide long-term care when needed. It is this misconception that most likely prevents people from planning for care for themselves. In fact a recent study revealed that many people believe they can give away assets prior to the need for care and qualify for Medicaid. The study supports the premise that this knowledge prevents people from considering buying long-term care insurance as a way to fund the cost of future care. Indeed it may be possible to use the system and allow Medicaid to cover care but at what cost? Why would anyone want to plan to spend his remaining years in a nursing home, which is the preferred living arrangement for Medicaid? And why go through the expense and effort of trying to manipulate the system to get welfare care, when a little preplanning at an earlier age would be a better option?

In our practice we hear frequent objection to long-term care planning from people who think Medicare or the Veterans Administration will take care of them. These people simply don't understand the limitations of Medicare or the VA systems.

The National Aging Network, a government-sponsored program, is in the best position to help people receive long-term care in their homes. But unfortunately, for every dollar that supports a person through the aging network the government spends about $270 supporting a person in a nursing home. The priorities are all mixed up, but sometimes that's the way it is. Because it has inadequate funding, the aging network must confine its valuable services to people who have little income or for social reasons are disadvantaged. Moderate and middle income Americans can receive some services from the network but are mostly excluded or must pay their fair share of the cost.

We believe the lack of knowledge with Government long-term care programs is an impediment to proper long-term care planning. When people understand the limitations of relying on government programs they are most likely to be more motivated to plan for the future by making provisions in advance and providing advance funding to pay for care. Prior planning allows people to have a choice in their care setting and in the type of services they receive.


Step 4, Knowing Who to Contact for Help

Out of the 11 areas of advice or services below, we believe the average American is probably not conversant in any of them. These are the specialists, advisers or services that can make the difference in allowing someone needing care or his or her family to have a choice in care options. Without help, family may not always choose the best option. Much of this advice and many of these services will also help improve the condition or the environment of someone needing long-term care. We believe strongly that families that are prepared for care in advance are going to be significantly more successful than families that use a last-minute "do-it-yourself" approach. We can assure you that using a professional will save considerably more money than the actual cost of the service.

1. Personal Care Manager Services

2. Professional Home Care Services

3. Medical Care Services for the Aged

  • The American Perspective on Aging and Health
  • Treating Medical Problems
  • Medications and the Elderly
  • Geriatric Physicians or Specialists in Aging Medicine
  • Home visiting doctors
  • Health insurance advocates

4. Legal Services

  • The Need for Legal Services for the Aged
  • Finding legal help
  • Elder law or estate planning attorney

5. Financial Services

  • Reverse Mortgage Specialist
  • Long Term Care Insurance Specialist
  • Elder Financial Advisor

6. End-of-Life Services

  • Understanding How End-Of-Life Unfolds for the Aged
  • Advance directives
  • Palliative Care
  • Choosing Where to Die
  • Assisted Suicide
  • When Death Occurs
  • Coping with the Loss of a Loved One
  • Final Arrangements
  • Pre-Need Funeral Plans

7. Dial 211

8. Elder Mediation Services

9. eHealth Services

10.Assistive Technology and Monitoring and Prevention Services

11.Government and Community Aging Services


Step 5, Creating Sources of Funding to Pay for Services

Much emphasis has been put on long-term care insurance as the primary vehicle for funding future care needs. It is indeed an elegant solution but there are also some issues that have to be considered. Many long-term care needs at home are not covered by long-term care insurance especially in the initial phases of the need for care. For example a person might do just fine on her own in the home but may need supervision with taking medications, or help with providing meals or help with shopping or help with housecleaning or transportation for going to doctors' appointments. These needs alone would not trigger benefits from a long-term care policy. Or another example might be someone suffering from memory problems and needing help with answering the phone or taking care of financial affairs or perhaps forgetting occasionally to turn off the stove. Again, these issues by themselves would not trigger the policy. Long-term care insurance usually comes into play further along the "Need for Care Progression Curve" discussed in the section above. And surprisingly for a few care situations the policy may never pay.

Funds must be available to pay for early stages of long-term care needs if a caregiver is unable to provide adequate care on her own. And this is becoming a more frequent case because caregivers are often employed full-time in the workforce and simply can't provide the amount of support needed to help a loved one remain in the home. Long-term care insurance will come into play at a later time and families must have funding to provide for early stages of care needs. Sometimes the amount of funds needed could be substantial.

We must also consider the situation where someone cannot qualify for long-term care insurance or cannot afford it. As insurance companies tighten up their standards it is becoming more difficult for people with common medical problems to qualify. And group insurance which appears to be inexpensive is not well understood by employees and the actual premium costs for adequate coverage in the future are never disclosed up front. As a result many people buying group plans will have woefully inadequate coverage when they need it in the future. Or if they try to buy additional coverage in their group plan to keep up with inflation, they may be paying $8,000 to $10,000 a year to keep the plan when they are in their 80's. In fact, a group plan that is honest in its approach will be more expensive than an equivalent individual policy. Current group plans only work for people who are uninsurable with individual plans.

Someone cannot simply buy insurance and think the problem is solved. Much more is involved. First of all, pricing for various care options must be considered when planning for future care. In addition the length of time that care might be needed should also go into the planning process. And finally, inflation must be considered because costs in some care settings are going up every year at a rate greater than the underlying inflation rate. And even not keeping up with an underlying inflation rate of about 3% could be disastrous as costs at this historic rate will have doubled 20 years from now.

Other issues to consider are alternative forms of providing money for long-term care that families are not aware of or do not fully understand. Such options as reverse mortgages, buyback plans, health savings plans, family arrangements, life settlements, life insurance arrangements and business insurance carve outs are some options to consider.

Finally as part of the planning process, funding and planning for end-of-life should also be considered.


Step 6, Using Strategies to Preserve Assets

As in any area of consumer spending, knowing what to look for and what strategies to use in arranging for paid care services can often result in saving money. Some strategies allow for preserving the home or relieving the pressure of spending retirement savings. Oftentimes a strategy will provide tax advantages as well.

A person facing the prospect of long-term care with moderate income and moderate savings may eventually have to rely on Medicaid to pay part or all of the cost of care. For instance someone making $2,000 a month would not be able to afford a nursing home at $4,000 a month. Savings would be depleted quickly and the income from a spouse may be needed as well. Medicaid may become the only option. Medicaid has provisions to protect a healthy spouse at home financially. But many states rob a healthy spouse of a previously adequate income by allowing too little in protected resources and income. Likewise, children, relatives and friends are not recognized for the financial sacrifices they make in providing the early care before a recipient becomes bad enough to need Medicaid funded professional help.

Medicaid planning, using a professional Medicaid planning advisor or qualified elder law attorney, allows families to correct inequities in the system. Medicaid planning has gotten a bad name because some individuals, who would normally have too many assets to ever qualify for Medicaid, deliberately use it, many years in advance, to give away everything to their family so as to qualify for Medicaid. It is wrong to abuse the system in this way and to use taxpayer dollars to insure an inheritance for the family. And if that person is not anticipating immediate care, this strategy is just plain dumb.

Some Medicaid planners will attempt to discredit other forms of funding long-term care such as using insurance or a reverse mortgage. They do this in order to discourage the public from using these other strategies. The intent is to limit competition ensuring that paying clients will rely entirely on Medicaid planning as a solution. On the other hand, many long term care funding specialists will use the same strategy against Medicaid planners to eliminate competition from their services. These people make Medicaid planners appear as evil or dishonest. Medicaid planning is no different from tax planning. In fact a Supreme Court decision condones honest methods of eliminating income taxes or estate taxes. Tax planning and Medicaid planning both put an additional burden on taxpayers, but one is considered ethical and the other is often frowned upon.

We believe that all strategies have their place in the scheme of things. Medicaid planning fits certain circumstances usually where families are in a crisis mode trying to preserve a few assets such as a house or a savings plan. There is no attempt to take advantage of the taxpayers. Using other strategies for paying the cost of care is a much better approach for a younger generation wanting a plan that will allow for home care, assisted living and choice in care services.


Step 7, Creating a Long Term Care Plan

Here is a brief outline of the process of creating a plan.

Planning Documents and Instructions
Sample planning documents to be given to family members or trusted advisers are included. This includes instructions regarding wishes pertaining to care preferences, wishes pertaining to end-of-life, wishes concerning preferred medical treatments, desires for disposition of property and instructions to the Care Advocate or Personal Care Representative. These instructions do not replace formal legal documents designed for the same purpose but will provide in one place the preferences further outlined in legal documents. Family should be referred to legal documents if they exist.

Determining a Care Advocate in Advance
Complete Instructions for a Care Advocate or Personal Care Representative are provided. The Care Advocate or Personal Care Representative represents the interests of a loved one receiving care. This person could also be the caregiver as well, or a child, a friend or a trusted adviser could be given this responsibility. It is important to also assign someone to be a backup in case the primary responsible individual is no longer in the picture. This Care Advocate plays an important role in making caregiving decisions, in arranging funding for services, in arranging services and in coordinating care. The person could also be given responsibility with a power of attorney or as a representative for final disposition of the body of death. Or responsibilities of the Care Advocate could be split between different people.

Planning for End-Of-Life
Detailed instructions on planning for end-of-life are provided. Issues considered are preplanning of final arrangements, expressing wishes for a place to die and information and instructions for advance planning documents. Forms are provided for instructions for providing these services.

Legal Documents and Arrangements
Detailed instructions on arranging estate planning documents and establishing various powers of attorney. We recommend using an attorney.

Providing Financial Information for Future Care Costs
This form is provided to the family with a listing of assets, income and insurance plans. Particular funding strategies for long-term care services are detailed.

Providing a Repository of Resources for Caregivers and Coordinators
It is recommended that the Care Advocate and other members of the family involved in making decisions are provided with a copy of this book.

Copies of Checklists for All Involved in Care
These 42 checklists are the most valuable feature of this book. Each checklist provides specific instructions in a particular area of long-term care services or provider settings. These instructions allow the caregiver and/or the Care Advocate to make informed choices in choosing settings and services. The intent is to save these people a great deal of time, heartache, stress and money in choosing services and settings for the loved ones. We recommend all decision-makers receive a copy of this book with its attached checklists.

Developing a Plan
We have also provided a checklist for developing a long-term care plan. By carefully following these instructions a written plan will become a reality.

Making Your Wishes Known
This final step is the most important. No plan has value unless those involved in making the decisions are aware of it. We provide instructions on a number of different approaches in making those involved aware of the planning that has been done and providing instructions on what to do to implement the plan when the time comes.