Helping People with Progressive Memory Disorders »

Chapter 11: Issues and Feelings of Family Caregivers

As a person progresses through the stages of a dementing disease such as Alzheimer's disease, they require increasing amounts of care. Although the family is eager to provide assistance and comfort as the months and years pass, it may become progressively more difficult for the family to witness and deal with the ongoing decline. The caregiver may feel frustrated and depressed by the lack of control over the decline. The person receiving care may welcome assistance or the opposite - act angry because of the personal loss of control.

TIPS FOR FAMILY CAREGIVERS

Develop Some Emotional Distance
The family caregiver should learn how to develop a healthy amount of emotional distance, remembering that the person receiving care is not responsible for the changes in their health. Emotional distance involves being more objective setting personal needs and feelings aside briefly to focus on the task. It involves separating the loved one from the disease related changes. Sometimes it is hard to separate the person from the illness. Focusing on the special characteristics of the loved one, the personality, the preferences and special idiosyncrasies, will help the caregiver maintain feelings of caring for the loved one and develop a sense of emotional distance during personal care tasks.

Emotional distance helps caregivers during difficult tasks such as bathing or toileting. A more objective caregiver makes better decisions about setting priorities and about what to let go. For example, regarding personal care, if brushing one's teeth after meals is no longer possible, mouth rinses help. A diet high in fruit and vegetables and low in sugar, plus more frequent dental checkups, also help. Being firm and quick, and offering a reward during difficult times may help a resistant person to undress. A distanced approach keeps the caregiver more objective about steps to complete the task. When the task is completed, the caregiver can open up emotionally and relax with the care receiver in other activities, such as walking or gardening. Overall care becomes less draining emotionally and more effective.

Involve People in Their Own Care
A caregiver should watch and listen to the person receiving help to involve them in the personal care. If the person is unable to help physically, the caregiver should talk during the care: about the care, their interests, objects in the room, the weather, anything or anyone nearby, or their past memories. Share humor! Humans needs to interact, communicate, and laugh. These activities are important to both the helper and the person receiving help. Providing help with moments of kind, gentle humor relieves stress and brightens both the giver and receiver of care.

Nutrition and Eating

A good diet and 6 to 8 glasses of liquid (unless there are restrictions from the physician) are important to health. Foods rich in the B vitamins are critical to keep brain cells and nerves healthy; these foods include dark, green vegetables, beans and other legumes, meat, fish, and dairy products. Routine gum, tooth, and denture care are also important. When using a toothbrush becomes difficult, frequent visits to the dentist's office may be necessary.

As the ability to coordinate hand and finger movements change, cutting up food and feeding oneself may become a struggle. It may help to set up one dish or bowl with a small amount of food and one spoon. Foods that are colorful and easy to put on a spoon will help, for example, soft casseroles or stew. Foods such as peas, rice, pieces of meat, or spaghetti may slip off a spoon unless they are in small pieces with sauces to hold the pieces together. Mashed potatoes, vegetables in cheese sauce, thick soups, puddings, yogurt, and applesauce are easy to manage.

Wearing a colorful shirt or blouse when eating in a public place helps disguise spilled foods or liquids. Also, the person with the memory disorder should sit in the quiet part of the restaurant and away from the people traffic. The person with the memory disorder should sit in a chair facing a wall and not a window or the dining room, watching activities of everyone else. In this way, the person is more able to focus on eating and not be distracted by other people in the restaurant.

When a spoon is hard to use, finger foods - such as small pieces of fruit, vegetables, meats, bread, or cheese - will help keep eating an independent activity. If swallowing becomes a problem, moist, soft foods help. People who struggle to swallow may find it easier to drink thicker liquids, such as tomato juice and milk, and may struggle with thinner liquids, such as water or apple juice. Sometimes liquid leaks into the lungs when people swallow poorly. After a few swallows, the person should cough to make sure the lungs are clear, then continue eating.

If weight loss is a problem, nutritious snacks everyone or two hours may help. Boost the calories of foods with extra butter, oleomargarine, cheese sauces, or diet supplements. People over 65 years old and who are more than 10 to 15 pounds overweight may benefit from foods with fewer calories, such as fresh fruits and vegetables. Also helpful is more frequent exercise, such as walks, folding clothes or towels, kneading bread dough, sanding wood, or scrubbing furniture outdoors.

Stay Positive
Be aware of feelings about the person under care. If there is nothing the caregiver enjoys while giving care, the negative attitude will be discovered. As a result, assistance to that person becomes more difficult and tiring. Sometimes a little detective work by the caregiver can uncover some enjoyable qualities in the person under care. Sharing a funny or happy story or singing a song will keep the interaction positive. When the caregiving becomes wearing, unpleasant, and tiring, the caregiver should be aware of the danger of exhaustion and burnout.

To avoid exhaustion, the caregiver needs assistance at home, perhaps with housework or hiring someone to provide direct personal care. Respite at home or at a community program and a support group are also critical.

COMMON PROBLEMS IN FAMILY CAREGIVING
Typically family members want to keep their ill relative at home for as long as possible. Sometimes a married couple during their middle aged years promise each other:

"I will never put you in a nursing home. No matter what happens to you, I will always care for you at home."

Immature Promises
Such promises are made when the couple is young, strong, or coping well with minor health problems, such as an ulcer or slightly high blood pressure. They have no realistic picture of the overwhelming burdens of ongoing 24 hour a day care while running a household and keeping up with all the regular demands of daily life. These promises are unrealistic. They come from younger adults who have no idea of the breadth of demands involved in fulltime caregiving. Such promises need to be evaluated in terms of common sense and what will keep the whole family unit functioning best over the long term.

Isolation
Family members may feel trapped and alone in providing care. Sometimes handling their own household plus the additional expenses of caring for an ill person become overwhelming. Major depression, denial of the demands of caregiving, and withdrawal from other relationships may occur. Other people may stop visiting or telephoning to avoid facing the situation and its load of responsibility. Some family members have "weak stomachs" and may feel uncomfortable or ill when near ill people. They may stop contacts because they are too devastated physically or emotionally by the change they witness in the person they love. They cannot face their ill parent who has changed from a strong, energetic person of wisdom to a hesitant, frail person. It may be hard for out of town relatives and friends to face deterioration in those whom they love, so they stay away.

Family Conflicts
There may be long term conflicts in the family, old, unresolved issues such as a stolen girlfriend or a piece of family jewelry, lost years ago. These issues may carry current strong feelings that ignite every interaction within the family. These intense feelings may also tinge interactions between the family and others in the community.

Missing Skills
The family may never have learned how to work well together. They may not feel comfortable in each other's presence. Individual members may not know how to listen well or talk clearly to each other. They may not know how to match communication strategies to the needs of different relatives, that is what works and what does not. They may not have the skills to run a household, pay bills, cook, or assist someone with personal care. Relatives may live far apart, may barely recognize each other, or really not know each other and feel uncomfortable talking about intimate matters, such as personal care.

Feeling Guilty
Sometimes caregivers feel guilty. They may be doing an outstanding job of providing care but feel as if they are not doing enough. Even though they work very hard, day after day, they feel helpless and out of control. The loved one does not improve but slowly continues to decline. Sometimes the caregiver feels a "survivor's guilt" feeling that the caregiver should have the disease, that the caregiver deserves to be ill, not the person who has the condition. Sometimes the relief of being spared the disease makes the caregiver feel guilty. They may feel guilty about being tired or irritable and skipping steps in the care routine. Sometimes the caregiver feels uncertain about the strategies they develop to provide care and they wonder if the strategy is wrong or adding to the problem.

The physician, a nurse, clergy, or a support group can discuss these concerns with the caregiver, help ease the caregiver's anxiety, and reassure the caregiver that the care provided is excellent.

The caregiver should list their questions and concerns for the physician, nurse, and social worker to discuss during the regular health visit. Also, members of a support group may help brainstorm about practical solutions to the ongoing challenges of daily care management.

Unrelated Situations
Individuals within the family may be suffering from personal situations that are totally separate from the illness of their relative. The family members may be under stress or in crisis, such as unemployment, impending divorce, or treatment of their own degenerative or terminal illness.

To address the feelings of the family, each member should recognize their own struggles with the situation and be as objective and specific as possible to identify areas to improve care. These areas can be separated from feelings. Feelings of grief may be overwhelming to the family. They may benefit from supportive listening. A support group, pastoral counselor, or psychologist may be helpful.

Ongoing Support Is Important!
Support from a caring listener energizes both people. It is important that the primary caregiver, the person responsible for providing most of the care, have contact with others for respite and support. A local support group can make the difference in a family's ability to survive and function well over the long term. These national telephone numbers provide information about local services throughout the United States: call 1-800-272-3900 for the national Alzheimer's Association or 1-800-677-1116 for Eldercare Locator services.

DEALING WITH LOSS
Though difficult to handle and unwelcome, loss is a natural part of life. When people lose what they value, they feel loss. When people move, they feel loss until they make new friends and establish new routines. Vision changes associated with aging may feel like a loss. In this case, a pair of glasses helps one adjust quickly.

A person who suffers loss of health feels grief, one of the most painful human emotions. When the diagnosis of a chronic or a progressive condition is made, the person receiving the diagnosis, as well as relatives, grieve. The diagnosed person grieves for the loss of skills, decreasing control over body functions and not knowing what the future will bring. The family grieves about the diagnosis and for loss of the person they knew so well. As the illness progresses and the person changes in ability and function, the person and family feel the loss of shared experiences.

The diagnosis of Alzheimer's disease results in grieving over many areas of a person's life. These losses mount slowly over many years. The grieving starts when the physician presents the diagnosis. Slowly, as the person that the family knew and loved seems to change and the family adjusts, more changes occur. The adjustment seems never ending and overwhelming.

- The family misses the fact that Mother no longer cooks for the clan because she cannot remember recipes.

- The family is sad that Father can no longer fix or restore favorite pieces of furniture because he forgot how to use the tools.

The person with the diagnosis grieves as long as they have an awareness of their deficits. Medicine may help for a while if the person becomes depressed. Years later as the disease progresses, the person with dementia may not be aware they are impaired. A sad expression may mean they are dwelling in the past in their old memories, that they miss their childhood activities and relationships. An interesting, distracting activity such as walking over to the goldfish bowl or touching a plant may help.

During the final years of a progressive dementia the person may have lost the sense of self and be comforted easily by a treat or a warm smile. During this stage the grieving of the family may be very intense as they try to manage the daily personal care of their loved one at home. Even with the assistance of a nursing home the family may be deep in grief and need the support and encouragement of staff and a support group.

Dealing with loss takes time. Everyone needs their own way and their own amount of time to work through the emotions of sadness and hurt. Sometimes people progress quickly through the three stages of grief; sometimes they go back and forth or skip stages.

Three Stages of Grief
Grieving will be discussed in three stages: 1) the shock stage, 2) the adjusting stage, and 3) the "new life" stage.

Stage One: The Shock Stage - The first stage of grieving is the shock stage. The person does not believe the news and essentially becomes "numb." The person may lose the sense of what is normal not knowing when to eat, perhaps not feeling hungry at normal mealtimes, not sleepy at night, and unable to make decisions. There seems to be an emptiness everywhere. Sometimes it is hard to accept the news even when it is repeated over and over. Time helps for the news to become real and for the sadness to penetrate.

Some suggestions to help:

  1. A person in the shock stage who cannot believe the news about the diagnosis should talk to someone about the news and their feelings. The person with the diagnosis and the family should share their feelings with each other if possible and with other family members. It may be helpful to use expert listeners, such as trained clergy, mental health counselors, social workers, and nurses. Support groups are wonderful.
  2. It helps to be with loved ones. They can provide support.
  3. Suggestions to fix the grief are not as helpful as genuine caring. Empathy goes a long way at this time.
  4. During this time, it helps to list the daily schedule, new appointments, and notes of callers. One's memory and thinking may not be as clear due to the stress of grieving.

Stage Two: The Adjusting Stage - The second stage shows the beginning of the adjustment process. People begin to change. They want to do something to strike out, to show anger, to make a deal, or to return things the way they were.

Some suggestions to help:

  1. The person should realize what is lost but remember what remains each day. It helps to focus on the remaining abilities and skills of the person with dementia to enjoy their company and to do things together.
  2. Physical exertion is a good way to deal with anger or frustration about the situation. Swimming laps, playing golf, taking walks, scrubbing the floor, waxing the car or furniture, trimming bushes, or making bread can help vent intense feelings.
  3. Sometimes getting out alone and looking at peaceful scenes such as a flower garden, going to a museum to view rich colors, or having a quiet time at a local church, chapel, or synagogue can bring relief.
  4. Writing down feelings on paper can help. Sometimes it helps to keep a diary in order to review past experiences and gain some perspective. Sometimes it helps to wad up the paper filled with words and toss them vigorously into the trash, sort of a symbol of "throwing away the anger."
  5. Expressing feelings through painting or music helps.

The Third Stage: The New Life - The third stage of grief is the new life stage, the steps that a person takes to move on to the next phase of their life. They become more objective. The intense feelings of grief are softened. The person may feel tired of grieving and feel ready for something new or different. There may be occasional moments of anger or sadness, but these times are fewer.

Some suggestions to help:

  1. A person who feels isolated or lonely should seek the company of a pet, a friend, or a support group.
  2. It helps to do something that is new, different, and fun, such as going to a movie or buying a special treat for yourself.
  3. This is a time to be with people at a sports event, a free lecture at the public library, or a reception at a community center. Being around happy, healthy people can be healing.
  4. Try to remember what used to be fun and who used to be fun. Renew former activities and friendships.
  5. Volunteer. Help others as a way to help yourself.

Pathological Grieving
Sometimes an individual grieves so deeply that they can no longer manage their own daily routine. They remain alone as the months pass. They only feel relief with drugs or alcohol. When these circumstances occur when people have multiple losses and feel like ending it all there is danger. They need help at once. They need to get professional help from a physician, a trained clergy, or a helping program in the community.

Anticipatory Grieving
Grieving that occurs before the loss actually happens is called "anticipatory grieving." Knowing or fearing that the loss will come, people predict the burdens of the future and feel the weight of those future burdens immediately. Family members will grieve someone's death at the time of diagnosis because they anticipate the loss. Earlier than expected, family members will feel the sadness of the death, have crying spells, become depressed, lose their appetite, and have trouble sleeping.

Sometimes a family member will go through the stages of grief the grieving, healing, and recovery before the relative actually dies. As a result, the grieving at the time of death may be very mild. It may be light, easy to handle. It may seem as if the family member does not mourn the death. In truth the grieving and recovery have already occurred. The person has dealt with the situation, worked through their feelings, and adjusted to the change.

NOTE: It is important that the caregiver not complete their grieving, not feel that the ill person has gone and not move on to a "new life" while the ill person continues to live. While the old relationships and roles exist, there are ways to adjust without completely withdrawing from all connections to the ill person. Support and caring from family and friends can be critical to the ill person and to the caregivers during this time and especially during the final days of life.

Time does provide healing. Once in awhile, a memory brings with it a bit of sadness, but usually these moments become fewer and fewer as the months and years pass. As other events or new interests and relationships fill the days, life goes on with new adventures for someone who is open to new possibilities.

Stay positive. It is important to focus on what the person with the progressive memory disorder can still do and enjoy, and what makes them still smile. A person does not need to be useful to be good company.

Ways to Educate and Help Families

  1. Support groups.
  2. Educational handouts.
  3. Seminars or workshops.
  4. Community centers; senior centers.
  5. Social services.
  6. Home health agencies.
  7. Respite care programs or in-home respite aides or volunteers.
  8. Network of family, clergy, and friends.
  9. Phone in lines for free information, such as Tel-Med or United Way Information & Referral offices.
  10. Adult day health care programs.
  11. Long-term care programs.

Helping a Person with Alzheimer's Disease Deal With Loss
The strength of memory ability is important to consider when telling a person with memory deficits about loss. If the person is wondering about the absence of a pet or a loved one and they have some short-term memory ability, it may help them to know a brief version of the situation. Telling the person that an absent family member has gone to the hospital to get well may be enough information. It may be overwhelming to go into specific details about the illness, surgery, and steps to recovery.

If they are unable to remember for more than a few seconds, it may help to say that the missed person, who may be deceased, has gone for a while. Then distract with an interesting activity. A positive explanation about their new situation, home, or new helpers followed by an interesting, pleasant activity may help them relax and feel safe.

Sometimes it helps the survivor to talk about the missed person and their feelings, but be ready to distract them quickly with a walk outdoors, a trip to the bird feeder, a snack, or some happy music.

People with Alzheimer's disease may experience restlessness and the desire to wander or pace in the late afternoon. They may become sad and repeat questions about the missed person. They may become anxious, confused, and agitated as they ask more questions. Short answers, some warm companionship, and a pleasant distracter should help. The best time to discuss the topic is probably after breakfast when they are fresh and think most clearly.

If possible, provide a quiet space. Perhaps late afternoon could be a time for listening to the radio, music or television, walking, visiting friends, looking through magazines, or attending religious services. If one activity is refused, try another. Radio or television programs enjoyed in the past for example, reruns of the Lawrence Welk Show, travel movies, or old game shows work well now.

NOTE: Be aware that watching television may confuse and disturb some persons with Alzheimer's disease. They may think the people and cars on television are in the room. If television or radio creates such confusion and anxiety, remove them. Music may be better.

Other practical suggestions:

  1. Look at photos in a family album. Identify the people and places and discuss past events.
  2. Music: freeform dancing, chair dancing, or exercise to music.
  3. Organize eating utensils (no knives) in a drawer, pile newspapers or magazines in a box, fold clothes, or sort greeting cards, coins, large buttons, or old costume jewelry.
  4. Play with pets: a dog, cat, rabbit, or bird.
  5. Supervise or organize activities with young children such as coloring, playing games, singing, grooming or caring for pets.
  6. Draw, paint, cut, paste, and trace with safe arts and crafts materials.
  7. Do kitchen, house, or garden tasks. Watch for safety.

STRESS WITH CAREGIVING
Stress can be described as a physical and emotional reaction to change. Often there is a feeling of pressure, a feeling of being exhausted emotionally as well as physically because of constant demands. Giving care to others over a long period of time puts the caregiver at risk. Older spouses and adult children carry different burdens in their own daily lives. Sometimes the older spouse has chronic health problems. The adult child may be trying to balance the roles of homemaker, parent, community leader, and employee. People often carry large loads of stress when the responsibility of caring for someone with Alzheimer's disease is added to their lives. They may feel tired or build up strong emotions, such as anger, sadness, fear, or guilt. Carrying such large loads of stress puts them at risk to neglect or abuse the person with Alzheimer's disease.

Suggestions to Manage Stress
There are many things that one can do to maintain emotional and physical health while caring for a person with Alzheimer's disease.

1. Stay involved and active in something you like to do. Keep life simple, routine and fun.

a. Take a class at local schools or community centers.

b. Get involved in community affairs.

c. Join social groups: card games, gardening, book clubs, art groups, craft clubs, horseshoes, bingo, and support groups.

d. Visit with family and friends. Stay away from unpleasant people or worriers.

e. Encourage and accept help from others.

f. Find out about and Use community resources.

2. Deal with feelings.

a. Stay in tune with yourself (learn the specific actions that upset you) and deal with feelings early on.

b. Accept sadness and anger.

c. Discuss feelings with others. Telephone a friend.

d. Everyday treat yourself to something special, such as a favorite book, an outdoor scene, a hobby, or window shopping.

e. Deal with issues as they happen. For example, call about an incorrect utilities bill the day the bill comes. However, if it is too big an issue, sleep on it and deal with it when you are rested.

f. Be patient with yourself. Allow time for change.

3. Learn to relax.

a. Exercise. Join a health club.

b. Meditate.

c. Listen to music.

d. Get a pet.

e. Do what you enjoy, such as watch a movie, talk with a friend, or work on your antique car.

f. Plan ahead for a special fun activity, something to enjoy and anticipate, such as travel or a dinner theater date.

g. Regularly relax your favorite way.

h. Put plants, pictures, or special objects in different rooms so you always see something pleasant or uplifting.

i. Visualize a scene, a person, or a memory that relaxes you. Capture the image in detail, the smells, the sounds, the tastes, etc. Return to the image to relax you.

4. Keep good health habits.

a. Have regular medical checkups.

b. Exercise regularly.

c. Eat a balanced diet. Watch your caffeine intake.

d. Get enough sleep.

e. Avoid alcohol and tobacco products.

f. Educate yourself about prescription and over the counter medicines.

g. Spend time with other family members. Give your spouse and children special one-on-one time each week.

5. Remember the value of humor.

a. Share a cute joke or photo. It is good for everyone.

b. Laugh or at least smile for your health; laughter lowers the blood pressure and helps healing.

c. When feeling tired, stuck with an unsolvable problem, or frustrated, try humor for energy and making the task lighter.

d. Buy a calendar with a new joke or funny saying for each day and share that joke with someone else.

e. Watch a funny movie with a friend.

f. Laugh about your score when playing golf, horseshoes, cards,...

6. Keep a positive attitude.

a. Focus on the abilities, such as the ability to smile, not the disabilities.

b. Relax and smile before starting a task.

c. Sing or hum while doing a task.

d. Appreciate your ability to handle more responsibility.

e. Forget and forgive your mistake and try again.

Abuse and Neglect
Neglect and abuse are major concerns. Often caregivers do not know how to care for someone with a dementia. As a result there may be major gaps in the care, resulting in neglect. For example, the caregiver may not provide good nutrition because it may be easier to serve desserts and salty snacks. They may not understand how necessary good nutrition is for healthy function in the brain and the rest of the body.

Sometimes relatives give excellent care and wear themselves out in the process. As a result of being worn out, a caregiver may suffer from stress and may become irritable and short tempered. This kind of situation has the potential for abuse to occur. That is why it is so important to manage stress.

Identifying Neglect and Abuse - The following are some general guidelines for people to identify victims of neglect or abuse. Any signs of neglect or abuse should be evaluated. Injury from abuse may be reported to law enforcement officers without the consent of the victim.

It is appropriate to refer suspicious situations in the State of Florida to the Florida Abuse Registry at telephone number 1-800-962-2873.

There are many reasons to suspect neglect or abuse, for example when you see:

  1. A person who is consistently hungry or inappropriately dressed for the weather.
  2. A person left without supervision for extended periods of time.
  3. Injuries, cuts, bruises, or burns to the face, neck, throat, chest, wrists, abdomen, or genitals; many injuries in various stages of healing; various fractures; chronic pain.
  4. Large delay between time of injury and coming for treatment or chronic neglect of health needs. History of "doctor hopping."
  5. An injury that does not match the explanation given.
  6. Evidence of sexual assault.
  7. Repeated use of emergency room services.
  8. Psychosomatic or emotional complaints.
  9. Thoughts of suicide or suicide attempts.
  10. Overly attentive or aggressive partner or adult child.
  11. A person heavily dependent on an identified caregiver for personal or financial needs.
  12. Presence of substance abuse or family violence.
A health professional who suspects neglect or abuse should ask these kinds of questions:
  1. Has anyone in your family shoved, shaken, or hit you?
  2. Have you ever been left alone, locked in a room or closet, tied to a bed or chair?
  3. Has food, medicine, or medical care been withheld or misused?
  4. Were you ever threatened by your relative or caregiver?
  5. Were you ever afraid to discuss details about your relationship with your relative or caregiver or the situation at home?
  6. Has money or property been taken from you or forcibly signed over to a caregiver or others?

Emotional Abuse - Emotional abuse is harder to spot than other forms of abuse. Most commonly noted caregiver behaviors: 1) blaming or belittling the person receiving care, 2) ignoring the care receiver's needs or requests for help, and 3) withholding affection from the person.

When there is reason to suspect neglect or stress, the situation should be reported to a health professional, a member of the clergy, law enforcement officer, or in Florida to the Florida Abuse Registry at the telephone number 1-800-962-2873. People who report cases of neglect or abuse can have their identity kept private.

CHAPTER SUMMARY
The typical family caregiver has many issues and feelings to handle in the course of providing assistance to someone with Alzheimer's disease. When the caregiver is able to develop some emotional distance, to separate feelings for the ill person from the personal care tasks that need attention, it is easier to help the person with more difficult tasks, such as toileting or dressing.

The ill person should be encouraged to do as much as possible for themselves.

In later stages of decline they should help even if it means aimlessly wiping a counter "to help clean up after mealtime. Interaction during caregiving tasks should focus on the steps of the task or general conversation to provide stimulation.

The caregiver should keep a positive attitude. Relief from family members, friends, paid helpers, and regular attendance at a support group can help the caregiver avoid exhaustion. The caregiver needs skills in personal care, household management, and interacting well with other relatives to shoulder the responsibilities of long term care.

Stages of Grief - A diagnosis of a progressive dementia may result in grieving. Not only does a person grieve their own loss of health but also their family feels the loss and grieves. Each person passes through the stages of grief in their own way and at their own pace. The three stages of grief are described as: 1) the shock stage, 2) the adjusting stage, and 3) the new life stage. In the shock stage it helps to be able to talk to someone about concerns and feelings and to spend time with loved ones. In the adjusting stage it helps to exercise regularly and to express feelings on paper, in music, with clay, or through painting. This may be the time to do simple activities with the ill person, such as a short trip to the museum or plant shop. During the new life stage, the feelings of grief are softened; sometimes renewing former activities with new friends or volunteering to help others reduces grief.

When an individual grieves so deeply they can no longer cope with their daily routine at home or work, they need help from a physician; they may be suffering from pathological grieving that requires professional treatment.

Sometimes when a person learns about a loss, not only do they feel some immediate grief, but they also look ahead and feel burdened by anticipated stressors. Before change occurs, they adjust in anticipation of the future. This double burden may be overwhelming. Sometimes a caregiver will have completed grieving for the loss of their ill relative before the death occurs.

It is essential for the caregiver to receive some type of regular assistance at home, to take care of themselves and to access a support group to avoid overwhelming stress. By avoiding overwhelming stress, they are less at risk to cause neglect or abuse.

Neglect or abuse should be reported. In Florida, people should call the Florida Abuse Registry at telephone number 1-800-962-2873.

Caring for the Person With the Diagnosis Includes Caring for the Caregiver - When a person is diagnosed with a severe memory disorder, there are at least two people who need special attention. The first person is the one with the memory disorder. The second person is the caregiver. The caregiver is the one who is most available to help the patient manage the daily routine and activities.

Caring for oneself is essential for caregivers. Research shows that caregivers must have a regular "time out." They must have respite to provide relief from the activities of giving care to someone else. This "time out" should help the caregiver relax, to become refreshed. It may involve a couple of hours of golf, reading a book, knitting, fishing with a friend, lunch with friends, or worship time alone.

Sometimes caregivers do an excellent job of providing care to the loved one who has the severe memory disorder. At the same time they have not yet learned how to take care of their own needs. Taking time for one's own needs, to become refreshed, and to restore one's physical as well as emotional energy, are essential to manage long term responsibilities. Also important is the need for support and information about the progressive memory disorder, the latest in research developments, possible treatments that may be helpful, and community resources.

General rules of thumb for the caregiver considering the need for extra help include:

  1. Learn about the helps in the community long before you need them.
  2. Get the extra help when you begin to wonder if there is a need.

If you are wondering:

"Is it time for medicine to help calm down Mom?"

"Why am I so tired? Do I need help?"

"Is it time to use a retirement home?" or "Is it time to use a nursing home?"

Then it probably is time for the extra level of help!

Back to Index

Material taken from

"Helping People with Progressive Memory Disorders: A Guide For You And Your Family, 2nd ed." (University of Florida Health Science Center). Used with permission from the authors: K. M. Heilman, MD, L. Doty, PhD, J. T. Stewart, MD, D Bowers, PhD, & L. Gonzalez-Rothi, PhD. (1999).

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College of Public Health and Health Professions, University of Florida