Helping When Health Fails

“Mother is becoming forgetful and confused. She doesn’t remember to take her medication, doesn’t prepare nutritious meals and forgets to turn off the range, what can I do?”

“Should Father be allowed to drive? His vision is very poor. He’s had one minor accident, but seems to drive okay the four blocks to the store.”

“Mother needs 24-hour supervision. The only choices we have are for Mom to live with us or in a nursing home. Mom says she would rather die than live in a nursing home. But, Mom and I only seem to get along when we are living apart.”

These situations are difficult for families. The decline of a parent’s health or intellectual capacities often require adult children to become involved in decisions about a parent’s life. These decisions are not easy and there are no simple solutions. Each older person and family system is unique. The right answer for one family may be inappropriate for another faced with a similar situation and decision.

Dealing with age-related changes in our older parents is a relatively new phenomenon. In 1900, for example, only one out of 25 people were age 65 or older. Today, one out of ten people are in this age category. Life expectancy at birth has increased 25 years in this century, to 69 years for males and 74 years for females. A male reaching age 65 can expect to live another 14 years and a female 18 more years. The most dramatic demographic change is the increase in the “old-old” population—persons 85 and over. This is the fastest growing age group and is expected to increase by 200 percent in the next 20 years. The older a person, the greater the likelihood of increasing health problems and frailty and the need for family support and assistance. Furthermore, it is no longer unusual for retirees age 65 and over to have a parent still living.

Many people never face major problems concerning aging parents. Their parents remain physically and mentally active until their death and need little or no assistance from their adult children. For other older persons, health, limited financial resources, or loneliness present serious problems.

There are few guidelines for dealing with the changes that occur when a parent’s health fails and for making the necessary decisions. Most of us have not had models for dealing with this transition. This publication will provide families with general principles to consider as they approach dilemmas and make decisions regarding their aging parents when health fails.

Coping with Feelings

The increasing frailty of a parent can be a daily reminder of that parent’s mortality and by extension, the other family members’ mortality. A change often must be made in perceptions of the parent. Making this change can be emotionally painful. It is not easy to accept that “my father is no longer the strong and powerful man he once was,” or “my mother, who was an excellent cook, no longer knows how to cook.”

Express your feelings to someone who will listen and understand—a friend, family member, minister or mental health professional. This will often lessen the pain. Remember, too, that your parent is likely to have similar feelings. It is difficult for most people who have been self-sufficient to accept any level of dependency. Loss of independence and control—qualities highly valued in our society—can be a blow to an older person’s self-esteem. Many older people will fight to keep their independence as long as possible. Some will deny or mask their dependency by insisting they can manage perfectly well, by refusing any offers of help, or by attempting to rule the lives of other family members.

Encourage your parent to discuss feelings of dependency in reaction to the changes in life. Acknowledging the losses and difficult changes in a parent’s life with statements such as the following often encourage open sharing:

  • “It must be difficult, Mom, to leave your home of 40 years and try to decide what you will take to the small apartment and what you will give away.”
  • “Dad, I know you have always prided yourself on being an independent person. I’m feeling it is very difficult for you to ask me for assistance now that you can no longer drive. Is that right?”

Adult children’s unresolved feelings can result in unwise and inappropriate decisions. Behaviors sometimes seen in adult children that are the result of unresolved feelings include:

  • never visiting or contacting parents
  • oversolicitous behavior – always trying to please a parent and doing everything for a parent who is never satisfied
  • fault finding – nothing is right with the care and support anyone else gives to the parent
  • martyr – making unreasonable demands on yourself and not letting others help with care giving.

Before a Crisis

Have you spent time planning for the part you might play in your parent’s old age? Most of us do not like to think our parents someday may not be self-sufficient. As a result, most families are unprepared to handle a parent’s increased dependency.

The best approach is to talk with parents before a crisis develops and discuss future “what ifs.” For example, ask your parents what their wishes would be if they could no longer live at home. Have more than one plan. Circumstances at the time of crisis may prevent implementation of the preferred plan. However, tentative plans can provide some insurance against making unsatisfactory decisions.

Talking may not be easy, especially if frank discussion of emotional issues have been avoided in the past. Take advantage of opportunities for discussion. For example, when a parent says, “When I die–,” listen and encourage expression of feelings. Do not discourage discussion by statements such as “don’t be so morbid,” or “you’ll probably outlive all of us.” Listen, encourage expression of feelings, and explore the future. The move of a parent’s friend to a nursing home or to live with adult children or the poor health of another can be natural times for talking.

Crisis: Reducing Strain

Adults often find their aged parents need support at a time when their own lives are most complicated and their responsibilities heavy. If you are middle-aged, you may feel pulled in three or more directions—raising your children, being supportive to a spouse, working and helping aged parents. It is also not unusual to feel “Why me?” or to ask yourself, “What about my life?”

If your parents are 80 or older, you are likely to be in your 60s or 70s and may be adjusting to age-related changes—retirement, reduced income, widowhood, poor or failing health—and may not be able to provide the assistance a parent needs.

Involve Parents in Making Decisions

When considering what is best for your parents, ask what they think is best for themselves. Too often the older person is forgotten and no one will tell him about decisions under consideration or those already made. This only contributes to feelings of isolation, helplessness, anxiety and perhaps, despair.

Shared decisions produce the best results. Aged persons have a legal and moral right to participate in plans affecting their lives and to make their own decisions. You may not always agree with their choices. Only when your parent has experienced brain deterioration or there is evidence she is endangering the lives of others should her ability to make her own decisions be questioned. For example, if your father does not see well, has had several minor accidents and still insists on driving, then you have a responsibility to take action. In such cases it may require an adult child to dictate or to overrule a parent’s desire. Even this should be done with kindness and honest explanation.

A parent who is excluded from decisions is most likely to become angry, demanding, helpless or withdrawn. And plans are likely to backfire. Involvement in decision making provides greater assurance that a parent will accept and adapt to change, even if it is not the parent’s choice.

Communicate Openly

Open communication is a key to building and maintaining effective relationships. Adult children and their parents frequently play games with each other. Adult children sometimes send messages they feel their parent wants to hear or messages that will not upset their parent, rather than what is true.

Speaking from the standpoint of your personal feelings opens communication. For example, “Mom, I am concerned about your safety in this house. I fear that you may fall and not be found for several hours or even days.” An example of the less effective is, “You must move, Mom. This home just isn’t safe for you.”

Explore Options

Carefully explore various options before making any decision. It is important not to have preconceived ideas about what it the best solution. Identify all implications of a change under consideration. Consider the effect on your parent, yourself and other family members. Avoid making a decision irrevocable. Keep options open. Approach a decision from the perspective that this seems like the best decision for now. See how it works. For example, a move by a parent into an adult child’s home may later not be viewed as the best decision by either the older person or the family.

Families too often make decisions based on inadequate information. Find out about available community services and how to access them. Sources for information about local services for older adults include area agencies on aging and senior citizen centers. And do not forget about friends and neighbors. Many are willing to provide assistance, especially on a short-term basis.

Assess the resources of various family members and what they can contribute. Avoid unrealistic expectations of family members. Remember, each of your brothers, sisters, children and spouse have a unique relationship with your parent. Sometimes, individual family members are experiencing stress in their own lives—for example, a troubled marriage, problems with teenage children, uncertainty about a job—that may limit the support they can give. Avoid judging other family members and what they can or cannot contribute. This will often go a long way to building family solidarity.

A family conference can provide a form for open communication between family members. Siblings, spouses, and other relatives who are concerned and will be affected by the decisions should be involved. This includes young children, for example, who would be affected by a grandparent moving into the home. A family member should not be excluded from the decision-making process because of distance, personality or limited resources. Include those who are argumentative or never visit as well as those who provide emotional support. This helps avoid later undermining of the decision.

One person who should never be left out of the family conference is the older parent. A parent who is not able to attend should be kept informed of the proceedings and involved in the decisions as much as possible.

Honest sharing of feelings and open communication guarantee successful family conferences. If friction or anxiety prevents rational discussion, seek professional guidance. A professional often can provide an objective assessment and help a family deal with emotional conflicts. Social workers, mental health professionals or counselors skilled in working with the elderly and their families may be found at senior centers, hospitals, mental health facilities, or home health agencies.

Allow Parent Choices

Too much loving protection can be destructive to aging parents. The wish to protect an older person who is becoming increasingly frail is natural; however, this is usually the last thing an older person wants or needs.

Strive for a balance between caring and overcaring. Taking over functions that your parent can still fulfill—even with difficulty—is likely to make your parent angry, depressed, or more dependent. People resent forced dependency.

Avoid making assumptions about a parent’s ability, feelings or needs. For example:

  • “Mother would be happier if she moved. There are just too many memories of Dad in the house.” (It might be that Mother’s adjustment to her spouse’s death is likely to be even more difficult if a move is forced on her.)
  • “Father should not live alone since he cannot see very well.” (In fact, Father may have learned to compensate for his loss of sight. He may function very well in his familiar home environment.)
  • “The best place for Mom would be a retirement complex so she will have to interact with people.” (It may be that Mother has never been people-oriented and would find living in a retirement complex frustrating.)

Before asking or forcing a mentally competent parent to make changes, ask yourself these questions:

  • Am I contemplating a protective environment for my parent’s sake or my own?
  • Are the dangers real or is it just that I would feel more comfortable and worry less knowing my parent is safe?
  • Would I feel too guilty if I let my parent take an occasional risk to live independently?
  • What does quality of life mean to my parent? To me?

Although a parent’s safety is important, this is not the only factor to consider when making decisions. Consider the life your parent has lived and your parent’s perception of the situation. Also important, focus on a parent’s strengths and remaining abilities as well as limitations. The limitations should not get in the way of seeing the whole person.

Avoid forcing your values on your parent. What you think is bad or best for your parent is not always accurate. Sometimes adult children are focused on a parent’s quantity of life while the parent is focused on quality of life. If your parent is mentally competent and chooses to remain at home, that is your parent’s right and choice. If you are concerned, express your concerns by using “I” statements. For example:

  • “Mother, I am concerned about your living alone, that you may fall and not be able to call for help.”

Avoid Promises and “Shoulds”

Avoid making promises such as “We’ll never put you in a nursing home,” or “You can always live with us, Dad.” Circumstances may change. What may seem like the best solution now may not be true 5 or 10 years from now when your parents’ circumstances—or your own—change. Promises that cannot be kept often result in feelings of guilt and mistrust.

Adult children also often find themselves bombarded with “shoulds” such as:

  • A good child should invite a parent to live in her home.
  • A loving child should not place a parent in a nursing home.

These “shoulds” can come from within ourselves, from other family members or from outside the family. “To honor father or mother” does not necessarily mean providing full-time care or doing everything for a parent.

Do not let old promises, “shoulds,” or guilt guide decisions. They reduce objectivity. As a result you are likely to make less satisfactory choices. Consider what is best for you, your family, and your aging parent.

Providing Care for Elderly Parents

Providing care is stressful and demanding. For many, it can be the equivalent of a full-time job or more. Sleep patterns may be altered. Activity with others may be drastically reduced.

An adult child may need to assume a new role with his parent. A healthy spouse may need to become more assertive and assume greater control over his partner’s life. This can be particularly difficult if the caregiver has been the passive person in the relationship.

These role changes can cause fear, conflict and confusion for everyone. Ill persons may resent the burden they have created.

They may also feel anger and frustration in relinquishing roles, and feel out of control.

Balance your responsibilities. Caregivers can easily try to meet too many obligations and responsibilities to the ill person, to other family members and to themselves. Before assuming caregiving responsibilities, carefully assess the impact on everyone—children included. Look at sacrifices everyone will need to make as well as possible benefits. Caregiving should not be assumed without careful thought to the expense to your relationship with your spouse, your own physical and emotional health, or the welfare of your children. Time and energy needs to be available to maintain quality relationships with spouse and children, who may be unintentionally neglected.

Meet your own needs. Self-sacrifice needs to be tempered with healthy recognition of your own needs. Ignoring your own needs is detrimental to yourself and to the person who needs care. Providing heavy care and getting little sleep leads to poor physical, emotional and spiritual health.

Set limits on what you can do. And most important, communicate your needs and what you can and cannot do for your parent and other family members. It is unrealistic and unfair to expect other people to know when you need help. Eliminate tasks which can be left undone.

Also, delegate tasks; ask family members to help. If another family member is not available, hire someone or ask a friend, neighbor, someone from your church or other organizations or get a volunteer from a local agency.

Plan time for yourself. This is not always easy to do, but it is important. Many people feel guilty about leaving the ill person and enjoying themselves. Caregivers can jeopardize their own health, and lose efficiency and effectiveness. If you become physically or emotionally exhausted, you will find your susceptibility to illness increasing, your problem solving ability decreasing, your frustrations mounting, and your emotions getting out of control—all warning signals. Maintain your friendships. Leisure time has positive effects on morale and energy.

Realize, too, that the decision to be a caregiver is not a permanent one. There may come a time when you are no longer able to provide care. Consider options—including nursing home care—in advance.

Involvement in a family support group may also provide answers to problems of caregiving and reduce social and emotional isolation. Sharing with others who are living through the same experience can be beneficial, and a source for venting feelings with others who understand.

Through awareness of the full life cycle with each of its stages may be at times dismaying, learning in advance about those stages can help ease the transition.

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Adapted with permission from materials originally prepared by Lou Isbell, State Specialist, Child and Family Development, University of Missouri-Columbia, and Vicki Schmall, Gerontology Specialist, Oregon State University, and published by The University of Missouri-Columbia, Extension Division, College of Home Economics.

Prepared by: Extension Gerontology Specialist, Texas A&M AgriLife Extension Service, Texas A&M System.

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Last updated: 21 November, 2013

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