The Family's Response

Family members experience many reactions as they care for a loved one with Alzheimer's disease. Difficult decisions are made that will profoundly affect the patient and his or her family. In the face of this stressful situation, caregivers may become aware of strong feelings or may notice changes in their own behavior and activities. These feelings are normal and natural responses to a difficult situation. At times it is useful to share these feelings with a mental health professional who has experience in the area of dementia. Your physician will know of a qualified social worker, psychologist or psychiatrist. Family service agencies usually can provide this kind of assistance. The Alzheimer's Association also has information on referral sources.

The Family's Emotional Response

Depression and Anxiety.

Families caring for a patient with a chronic illness such as Alzheimer's disease frequently experience periods of depression. Sometimes caregivers feel sorry for themselves, while at other moments their sadness is for the patient. A healthy spouse may feel as though he or she lacks the energy needed to socialize or pursue activities that were once meaningful. In response to the new emotional and physical demands, the caregiver's appetite or sleep habits may change. Family members worry about what the future holds for the patient and themselves. They may need to assume new roles and responsibilities.

Anger.

Family members are sometimes surprised at the anger that periodically emerges as they care for the patient. They wonder how they can feel angry with someone they love who is sick. Frustration and anger in this kind of situation are normal feelings. The patient exhibits irritating behavior at times. The patient seems ungrateful for the care that is provided. The patient's illness seems unfair. A husband or wife may feel deserted by the patient at a time in life when companionship seems so important.

Guilt.

Caregivers may experience guilt in response to these conflicting feelings. They wonder if they have done everything possible for the patient. Guilt may arise over misunderstandings that one had with the patient in the past.

Uncertainty.

One must recognize that any close relationship that endures over many years will have many aspects. The stress created by an illness touches every member of the family. The illness affects each family member differently. Only one thing is certain-- new emotions will be felt and these changes are normal.

Reaching out for help will better enable the family to cope and remain intact.

Role Changes

Adjusting to new roles.

Roles form the basis for human relationships and interactions. As the years pass, we grow comfortable in our roles and come to depend on others for fulfilling the roles that they play. In a family, we learn to rely on each other for certain things. For example, a family may look to grandma to organize and make preparations for the large gathering each year at Thanksgiving. A wife may count on her husband to make financial and investment decisions. An adult child still turns to his aging parents for advice and emotional support. Sadly, the intellectual, behavioral, or emotional changes that accompany Alzheimer's disease can alter the patient's ability to function in his or her accustomed role. The family must recognize these changes and make adjustments.

Feelings of loss.

Along with these role changes, both the patient and family experience feelings of loss. If the patient has been accustomed to running the household for many years, the realization that others are now called on to perform these tasks may be upsetting. If it is the caregiver who must learn to assume some of these new responsibilities, he or she may be understandably anxious, angry, or sad about the situation in which he or she now finds himself. Sometimes the illness makes it impractical for a patient or spouse to continue working, resulting in an unplanned and early retirement and financial strain. The patient with Alzheimer's disease and his or her family will experience many adjustments and changes. Understandably, patients and families experience a mixture of emotions including sadness, anger, and anxiety. The family must cope with many losses and should work to create effective strategies that compensate for these losses.

Intimacy: Sexual functioning.

The healthy spouse of the patient may find that their sexual relationship also is changed. The patient may no longer desire sexual contact while the healthy spouse must struggle with feelings of rejection, anger and frustration. Some patients may experience an increased sexual desire and make excessive demands on the spouse for frequent sexual encounters. On the other hand, the healthy spouse may no longer feel sexually attracted to the patient and may experience feelings of guilt. The caregiving role becomes more one of a parent than a partner often resulting in a change in the nature of intimacy. Emotional bonding and friendship may undergo dramatic changes as the patient becomes more emotionally flat and less caring. Caregivers may feel that the patient is selfish and unappreciative.

Difficulties in Social Situations

Embarrassment.

Families usually attempt to protect the patient with Alzheimer's disease in social situations. In the early stages of the illness, the patient may be unable to converse as he or she used to or may forget and repeat a story. Family and friends often try to "cover up" for the patient's diminished social skills. They may fill in missing words for the patient or divert the focus of attention away from him or her. Experiencing a sense of discomfort or embarrassment for the patient is normal. The question of what to tell friends and acquaintances can become a very difficult one to resolve.

Isolation.

Families often are uncertain about how to deal with this problem. Is it best to isolate the patient so that difficult situations are avoided? Should the patient and family continue with their social lives as if nothing had changed? Unfortunately, no easy answer exists. One might begin by asking the patient what he or she would like. Some situations may now be more stressful than others for the patient. For example, the patient may state that he or she continues to enjoy weekend family gatherings that include children and grandchildren, but finds that weekly card games are "just too much." The goal is to keep the patient as socially active as possible. Social isolation and exclusion may lead to a lower level of functioning or increased confusion.

Effects on the healthy spouse.

The husband or wife of the patient with Alzheimer's disease must face some alterations in his/her social world. The healthy spouse may realize that some acquaintances visit less frequently. The patient may no longer enjoy going out on weekends to a play or movie. He/she may be less affectionate. The patient's doctor often suggests that frequent travel to new places is disruptive for the patient and should be avoided. How is the patient's spouse supposed to react to these changes? Once again, this is a difficult situation that does not have one correct solution. Each spouse must develop a comfortable strategy for him or her. The continuing needs of the healthy spouse for social involvement are important. If the patient feels uncomfortable about an activity, the spouse need not sacrifice it totally. Perhaps a friend or family member can join the healthy spouse for an occasional movie matinee or evening out. Make plans, as needed, to have someone stay with the patient during these events.

We all need time for work and time for leisure, particularly the caregiver of the patient with Alzheimer's disease.

These needs are healthy and normal. Periods of time away from the patient can re-energize the family member, allowing him/her to continue caring for the patient. Spouses of Alzheimer patients have been called "the hidden patients." They may suffer from depression and increased stress that can lead to worsening of existing medical conditions or the onset of new illness. One of the most important things
that you as a caregiver can do is make sure that you tend to your own healthcare needs-- stay active, eat well, exercise, visit your doctor regularly, and ask for help. There is no obstacle to getting help and no caregiver needs to feel alone in his/her situation. It may be difficult to ask for help at first, particularly if you are used to doing things on your own. It takes courage and wisdom to recognize your own needs and limitations and seek appropriate assistance.

Expression of emotions.

People experience the desire to give and receive love in different ways at each stage of life. Sadly, changes in the emotional state of the Alzheimer's patient may affect his/her capacity to give and receive love. The patient who was once sensitive and thoughtful in his/her relationships with family and friends may become more preoccupied with his/her own needs. The caregiver, working so hard to provide for the patient's needs, may feel angry that he/she is not thanked. The patient may forget a birthday or anniversary. Do not view these changes in the patient as a reflection of something that you might have done, said, or felt. Rather, these changes are part of the illness.

Sharing the burden.

Social alterations are probably one of the most difficult aspect of the illness for families. The patient's lost social abilities may make those who love him/her feel the saddest. This is understandable since the way we view, come to know, and grow to love others is largely based on their social traits -- their sense of humor, their kindness, their special interests. Those who are closest to the patient may experience a strong mixture of feelings as they face the patient's changes in these areas. Talking with a professional about the impact of these alterations in the patient may help. Families and friends should draw together to provide mutual support. When the burden of care is shared, the task is far more bearable.

Letting People Know

Telling others.

One difficulty that sometimes arises in the early stages of the disease is the question of whether to tell friends and family. Sometimes people choose not to tell others because they are embarrassed by their symptoms. Rather than discussing the situation, they attempt to hide problems in memory and other areas by avoiding social engagements. Another reason for keeping the disease a secret is the belief that friends and or family would "fall apart" if they knew. Keeping the disease a secret is thought to spare others the burden of knowing.

Deciding not to tell.

Trying to keep the disease a secret requires a great deal of effort. It may also result in stress to the caregiver as he/she is unable to gain support or assistance from other people. In many situations, other people who interact with the patient are aware of problems, but are unsure of how to respond. Discussing the situation as openly as possible reduces stress and anxiety for the patient, family and, friends.

Young children may need to know that the patient's behavior is not a reflection of anything they have done. For instance, if children understand that grandpa is sick, they are less likely to feel that grandpa does not remember their names because he does not love them. If one wants to enlist the aid of neighbors in the care of the patient, they can be more helpful once they have a clear understanding of the problem. In new social situations, everyone may feel more relaxed if they understand ahead of time what the patient's difficulties are and how they can make the situation most comfortable for him. In dealing with the patient who has Alzheimer's disease, the family can benefit from all of the emotional and practical support that is available to them. A basic understanding of the patient's illness will allow those who want to help come forth. The patient benefits, as does the family.

How to tell.

Another issue that confronts all families in this situation is how to explain the patient's illness to others. A young child may not understand why his grandmother does not recognize him. Friends may be confused about why the patient and his wife no longer go to social gatherings as often as in the past. Some friends and family members have trouble viewing the patient as sick since the patient with Alzheimer's disease often appears physically healthy. The explanation of the illness that one gives to family and friends will vary; there are no right or wrong answers. Some families feel it is important to emphasize that the patient has a neurological illness, and not a psychiatric or emotional disorder. In general, a truthful and simple explanation will suffice.

Thinking About the Future: Assisted Living and the Question of Nursing Home Placement

Assisted Living.

As the patient with PRAD becomes more disabled, independent living, even with a healthy spouse, becomes more difficult. Many facilities exist and more are being developed to help the older persons "age in place." These facilities generally provide several levels of care ranging from independence to selected services to skilled nursing care. Making the decision to move to such a facility requires time and considerable planning but may ultimately be a reasonable solution to caring for a patient with PRAD.

When to consider a nursing home.

Many families agonize over the decision to seek an appropriate nursing home for the patient. Husbands, wives, or adult children who have worked to keep the patient at home may feel a sense of failure and guilt when they begin to consider nursing home placement. Each family's ability to maintain the patient at home is different. The level of functioning varies from patient to patient. The availability of community resources differs widely. The health and energy levels of family members to provide care will vary. Because of all these factors, no fixed guidelines can dictate when a patient needs nursing home care.

Safety.

One important factor to consider is the patient's safety. If staying at home without supervision is dangerous to the patient, alternatives should be considered. For example, if a patient lives alone and begins to forget to turn off the gas jets of the stove, the family needs to consider the patient's well-being. The health of the caregiver or spouse also affects decisions about keeping the patient at home. If the patient's demands begin to jeopardize or compromise the caregiver's health, other strategies for providing care should be explored. In planning for care, try to create a balance that considers the patient's and family's needs.

Exploring your options.

Some families find it useful to talk about nursing homes and even visit several facilities before a crisis arises. Just knowing that an alternative exists, if needed, allows some families to persevere at home. A nursing home may have a long waiting list for admission and nursing home placement requires careful planning. The financial arrangements for entry into a nursing home must be clearly understood. Programs such as Medicaid can help the patient with limited financial resources who requires nursing home care. Applications for benefits may have to be filed. If the patient has assets and/or income, the family considering nursing home placement should understand the state laws that govern financial responsibility for and joint ownership of property. Generally, the patient is ineligible for state assistance until most of his assets have been depleted for his medical care. Planning should involve and include the patient, the family, the patient's doctor or nurse, a lawyer (especially someone who specializes in elder care law), and a social worker who is knowledgeable about community resources.