Assessment and Designation of Resources: Nebraska's Spousal Impoverishment Protection Law (1989)

What would happen if your spouse was not able to live at home due to poor health or confusion?

Would you have to spend all of your resources to pay for your spouse's nursing home care?

For Example:
Barney is not able to take care of Betty at home any more, due to her health. He is thinking about admitting her to the long-term care facility (nursing home) down the street.

• They own about $100,000 in resources (assets).
• Their total income is $1,600 per month

QUESTION: Does Barney have to spend all of their money before the state helps pay for Betty's care?

ANSWER: NO - because of the Spousal Impoverishment Protection Law.

The Spousal Impoverishment Protection Law (1989)
This federal law protects spouses of nursing home residents from losing all of their income and assets to pay for the spouse's nursing home care. A couple's assets and income are divided according to this law.

Medicaid
This government insurance program helps people with low finances. To get Medicaid help for nursing home care, the assets of the person needing help must be at $4,000 or less. Medicaid is handled by Nebraska's Department of Health and Human Services.

Assessment of Assets (under the Spousal Impoverishment Protection Law)
Most assets (such as bank accounts, stocks, bonds, etc.) are considered joint assets between husband and wife. (It doesn't matter in whose name they are placed.) The Assessment of Assets is not a split of assets.

QUESTION: What amount of the couple's assets is the spouse at home allowed to keep?

ANSWER: Maximum - At least half of all countable assets, up to a total of $81,960 in 1999. Minimum - At least $16,392 in 1999.

For Example:
The total assets owned by Barney and Betty are $100,000. Half of Barney and Betty's assets are $50,000. Barney is able to keep $50,000.

The couple would need to spend the remaining $50,000 down to $4,000 before Medicaid would begin to help pay for Betty's nursing home costs. An application for Medicaid is required when the couple has spent down their assets to the appropriate level.

In addition to half of the countable assets, the couple may also keep their home, one automobile and their household furnishings. The couple may also prepay their funeral expenses.

Income (under the Spousal Impoverishment Protection Law)

• At-Home Spouse
  Income in your name remains your own (Social Security, pensions, interest, dividends, etc.). The spouse at home may keep all of his/her personal income.
• Nursing Home Spouse
  The spouse in the nursing home may be required to use most of his or her income to pay for care, except for a personal allowance of $40 per month ($50 per month, effective 9/1/99) and $90 per month for veterans.

After the income has been split, the At-Home Spouse may be able to keep more of the Nursing Home Spouse's income, IF…

• The spouse at home gets less than $1,383 every month (as of 3/1/99).
• The spouse at home has to pay rent, mortgage or utilities.
  

For Example:
Barney may keep all of his income (checks made out in his name, plus his half of the income that is jointly owned). Remember, if Barney's income was lower than $1,383 per month, then he could keep part of Betty's income.

Checks made out in Betty's name, plus her half of any jointly owned income, would be considered hers and would go to the nursing home to pay for her care, unless a portion is needed for Barney. (Betty may have $40 from her income each month, as her allowance for personal needs.) Betty will also continue to pay her Medicare Supplement insurance premium with her income.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Coping with Stress

Source: Barbara J. Helms, MA and David R. Wekstein, Ph.D., "For Those Who Take Care" University of Kentucky.

1. Always do your best. Seek the training you need to be the best you can be at your position. Maintain high standards. Do not let others bring you down.
   
2. Leave your personal problems at home. It is difficult to deal with personal stress and the stress of the job at the same time. Give yourself a break and leave the personal problems at home. One type of stress at a time will be a little easier to handle. In addition, the people who you are caring for have enough trouble dealing with their own problems. They will not be able to cope with yours, too. People with memory loss pick up on your mood and distress and will respond in that way. That makes them more "difficult" to care for - and it isn't their fault. Above all, do not take things out on the residents. If your problems are too difficult to leave behind, you may wish to ask to be reassigned for a while to a position that does not deal with direct care.
   
3. Do not take things personally. Residents with memory loss or their families may say or do things that could hurt your feelings. Remember, they are under a great deal of stress, too. They are usually not trying to hurt you on purpose. By responding to them in patience, you are providing a great service.
   
4. Learn as much as you can about your people and their problems. It is important to know the life stories and possibly the family history to help you understand the reactions some people will have to certain situations. Looking at life from their perspective can be more helpful to them and can take some of the "responsibility for their happiness" off your own shoulders. Many times, discontent, depression, anger, and self-centeredness are all life patterns. Sometimes these personality traits are in response to the terrible illness they are experiencing. You will not know unless you investigate. If you were in this situation, wouldn't you like the people who care for you to understand you?
   
5. The secret to happiness is not doing what one likes to do but liking what one has to do. Sometimes you may be asked to do things that are not exactly pleasant. If the tasks are too difficult, do not hesitate to talk to your supervisor or to ask for help. However, everyone, now and then, must do things they would rather not do. Perspective helps. If you have to do it, you might as well make the best of it.
   
6. You are not alone. People "on the outside" cannot really understand the things you go through, the stress you "endure," the grief you experience, the joy you feel when doing this job. Seek the support of your coworkers. Also, look for opportunities to give support to your coworkers. Many facilities have support groups for the staff to discuss the feelings, frustrations, etc., that are a daily part of caring for individuals with memory loss. This may be a wonderful option for your facility. Make the suggestion.
   
7. Maintain a sense of humor. At times, the experiences in a long-term care facility are absurd and "silly." It is okay to laugh. It is even therapeutic. Make sure the laughter is focused at the situation or yourself and not the resident. If you do not have much of a sense of humor, you probably do not belong in caring for people with Alzheimer's disease.
   
8. Lighten up. Working with people who have a memory loss can be sometimes sad, sometimes funny, sometimes tragic, always rewarding, and usually unpredictable. Go with the flow. Relax. Be flexible.
   
9. Take time off or time away. If you are under a lot of stress at work and/or at home and the stress is not under control, you may do more harm than good at work. Stressed-out staff have difficulty working with other staff and often take it out on residents. Take a "mental health" day or some vacation time or request a transfer to another part of the facility. Sometimes the only treatment for stress is getting away for a while.
   
10. A few other suggestions:

• Assign people to people not to floors or wings.
• Be accountable to each other.
• Participate in education and training programs.
• Avoid "turf battles" (such as "That's not my job." "This department doesn't do that."). Be a team!
• Always keep the right and dignity of the residents before your own.
• Maintain open communication with family as well as with other staff and shifts.
  
  

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Handling Everyday Hassles on the Job

• Know your stressors. What tends to upset you? Learn to recognize your physical symptoms of stress, such as headache, stiff shoulders, stomachache, etc. These are your clues to pay attention and take action.
  
• Learn to control your stressors. Analyze the situation. Can you avoid or make the situation less intense for you and/or your patient? Always ask the question, "Is this really a problem?" or "Am I overreacting out of fatigue, anger, frustration, etc.?" How often does the problem occur? Does it really happen that often? Keep a record.
  
• Expect the unexpected. In caring for Alzheimer's patients, prioritize important tasks but be flexible if the day doesn't go as you planned.
  
• Take the patient's perspective. Is his behavior a reasonable response given the reality of his situation? He may ask you the same question 10 times within the hour because he can't remember that he asked before. It really is new information for him each time.
  
• Get help. Talk to coworkers and supervisors about the cause of your stress. They may have suggestions to help solve the situation.
  
• Develop and practice stress-reducing rituals. Activities such as playing cards, walking, meditating, praying, and anything that has a calming effect on you are good examples. Do things you enjoy and do them regularly to prevent a buildup of stress. Prolonged stress can lead to physical illness and affect how you feel about your job and your patient.
  
• Know your limitations and the limitations of your patient. Remember your patient's behavior is the result of his disease. His limitations are often as frustrating to him as they may be to you.
  
• Be content with doing the best job you can for the patient at this time. The person with Alzheimer's Disease does not get better. Still, that individual deserves the best care we can give him. He still appreciates warmth, kindness, and caring.
  
• Have fun. Be good to yourself. Humor may be your best antidote. Try to incorporate humor in you life on a regular basis. Caregiving is easier when we can find light moments in what is often a very serious, demanding job.
  

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Plain Talk about Handling Stress

You need stress in your life! Does that surprise you? Perhaps so, but it is quite true. Without stress, life would be dull and unexciting. Stress adds flavor, challenge, and opportunity to life. Too much stress, however, can seriously affect your physical and mental well-being. A major challenge in this stress-filled world of today is to make the stress in your life work for you instead of against you.

Stress is with us all the time. It comes from mental or emotional activity and physical activity. It is unique and personal to each of us. So personal, in fact, that what may be relaxing to one person may be stressful to another. For example, if you are a busy executive who likes to keep busy all the time, "taking it easy" at the beach on a beautiful day may feel extremely frustrating, nonproductive and upsetting. You may be emotionally stressed from "doing nothing." Too much emotional stress can cause physical illness such as high blood pressure, ulcers, or even heart disease. Physical stress from work or exercise is not likely to cause such ailments. The truth is that physical exercise can help you relax and handle your mental or emotional stress.

Hans Selye, M.D., a recognized expert in the field, had defined stress as a "nonspecific response of the body to a demand." The important issue is learning how our bodies respond to these demands. When stress becomes prolonged or particularly frustrating, it can become harmful causing distress or "bad stress." Recognizing the early signs of distress, and then doing something about them can make an important difference in the quality of your life, and may actually influence your survival.

Reacting to Stress

To use stress in a positive way and prevent it from becoming distress, you should become aware of your own reactions to stressful events. The body responds to stress by going through three stages: (1) alarm, (2) resistance, and (3) exhaustion.

Let's take the example of a typical commuter in rush hour traffic. If a car suddenly pulls out in front of him, his initial alarm reaction may include fear of an accident, anger at the driver who committed the action, and general frustration. His body may respond in the alarm stage by releasing the hormones into the bloodstream which cause his face to flush, perspiration to form, his stomach to have a sinking feeling, and his arms and legs to tighten. The next stage is resistance, in which the body repairs damage caused by the stress. If the stress of driving continues with repeated close calls or traffic jams, however, his body will not have time to make repairs. He may become so conditioned to expect potential problems when he drives that he tightens up at the beginning of each commuting day. Eventually, he may even develop one of the diseases of stress, such as migraine headaches, high blood pressure, backaches, or insomnia. While it is impossible to live completely free of stress and distress, it is possible to prevent some distress as well as to minimize its impact when it can't be avoided.

Helping Yourself

When stress does occur, it is important to recognize and deal with it. Here are some suggestions for ways to handle stress. As you begin to understand more about how stress affects you as an individual, you will come up with your own ideas of helping to ease the tensions.

• Try physical activity. When you are nervous, angry, or upset, release the pressures through exercise or physical activity. Running, walking, playing tennis, or working in your garden are just some of the activities you might try. Physical exercise will relieve that "up tight" feeling, relax and turn the frowns into smiles. Remember, your body and your mind work together.
  
• Share your stress. It helps to talk to someone about your concerns and worries. Perhaps a friend, family member, teacher, or counselor can help you see your problem in a different light. If you feel your problem is serious, you might seek professional help from a psychologist, psychiatrist, or social worker. Knowing when to ask for help may avoid more serious problems later.
  
• Know your limits. If a problem is beyond your control and cannot be changed at the moment, don't fight the situation. Learn to accept what it is for now until you can change it.
  
• Take care of yourself. You are special. Get enough rest and eat well. If you are irritable and tense from lack of sleep or if you are not eating correctly, you will have less ability to deal with stressful situations. If stress repeatedly keeps you from sleeping, you should ask your doctor for help.
  
• Make time for fun. Schedule time for both work and recreation. Play can be just as important to your well-being as work. You need a break from your daily routine to just relax and have fun.
  
• Be a participant. One way to keep from getting bored, sad, and lonely is to go where it's all happening. Sitting alone can make you feel frustrated. Instead of feeling sorry for yourself, get involved and become a participant. Offer your services in neighborhood or volunteer organizations. Help yourself by helping other people. Get involved in the world and the people around you, and you'll find they will be attracted to you. You're on your way to making new friends and enjoying new activities.
  
• Check off your tasks. Trying to take care of everything at once can seem overwhelming, and, as a result, you may not accomplish anything. Instead, make a list of what tasks you have to do, then do one at a time, checking them off as they are completed. Give priority to the most important ones and do those first.
  
• Must you always be right? Do other people upset you - particularly when they don't do things your way? Try cooperation instead of confrontation; it's better than fighting and always being "right." A little give and take on both sides will reduce the strain and make you both feel more comfortable.
  
• It's OK to cry. A good cry can be a healthy way to bring relief to your anxiety, and it might even prevent a headache or other physical consequence. Take some deep breaths; they also release tension.
  
• Create a quiet scene. You can't always run away, but you can "dream the impossible dream." A quiet country scene painted mentally, or on canvas, can take you out of the turmoil of a stressful situation. Change the scene by reading a good book or playing beautiful music to create a sense of peace and tranquility.
  
• Avoid self-medication. Although you can use drugs to relieve stress temporarily, drugs do not remove the conditions that caused the stress in the first place. Drugs, in fact, may be habit-forming and create more stress than they take away. They should be taken only on the advice of a doctor.

Source: Edna L. Ballard, MSW (master of social work) and Lisa P. Gwyther, MSW. "Giving a Little Extra." Optimum Care of the Nursing Home Resident with Alzheimer's Disease. Duke University Medical Center.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Taking Care of Yourself

What Other Aides Say They do When the Going Gets Tough

Source: Edna L. Ballard, MSW and Lisa P. Gwyther, MSW. "Giving a Little Extra." Optimum Care of the Nursing Home Resident with Alzheimer's Disease. Duke University Medical Center.

1. "At lunch time, I go out to my car and listen to gospel music. That always calms me down and helps me see things differently. It gives me strength somehow."
   
2. "I tell myself that the patient can't help how he is. I remember what this person was like before he became so dependent. I know that they need me even if they don't know. On rare occasions, one of them may give a smile, a hug or a kiss. That makes it all worthwhile."
   
3. "I try to keep a certain attitude. It's like carrying certain baggage. When I come to work, I know I have a certain job to do, so I pick up that baggage (attitude). When I leave work, I can leave those problems behind and take on a different attitude. I see the problems of caring for Alzheimer's patients as part of the job. It's my job to be the best I can."
   
4. "It helps to talk to other nursing assistants. Sometimes they have an idea how to handle a particular problem. Sometimes you just have to talk to somebody who knows what you have to put up with."
   
5. "When I leave work, I leave the job here. I know it's important not to take the problems home with me. I have a family and I have a responsibility to them. I don't want them to pay for the hard day I may have had."
   
6. "I try to balance work with positive things outside of work. I have a very supportive family. I do a lot of fun things with them and with my friends. I think that helps me face some of the more difficult, sometimes, even nasty, behavior of some patients."
   
7. "The hardest part for me is dealing with families who don't understand or appreciate what you really do to care for their family member here in the nursing home. They can be pretty demanding sometimes. I think some families take it out on staff, because they are feeling guilty or frustrated. It's hard to take some of the abuse when you are doing the best job you can. I try to remind myself not to take this all personally."
   
8. "I work hard at keeping myself physically and spiritually healthy. That's the only way to do it. This is a hard job!"
   
9. "I do a good job. My faith and belief that this is important helps me on those difficult days when patients, families and sometimes even other staff all seem to be unreasonable."

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Coping Techniques for Caregivers

Source: Barbara J. Helms, MA and David R. Wekstein, Ph.D., "For Those Who Take Care" University of Kentucky.

1. Always do your best. Seek the training you need to be the best you can be at your position. Maintain high standards. Do not let others bring you down.
   
2. Leave your personal problems at home. It is difficult to deal with personal stress and the stress of the job at the same time. Give yourself a break and leave the personal problems at home. One type of stress at a time will be a little easier to handle. In addition, the people who you are caring for have enough trouble dealing with their own problems. They will not be able to cope with yours, too. People with memory loss pick up on your mood and distress and will respond in that way. That makes them more "difficult" to care for - and it isn't their fault. Above all, do not take things out on the residents. If your problems are too difficult to leave behind, you may wish to ask to be reassigned for a while to a position that does not deal with direct care.
   
3. Do not take things personally. Residents with memory loss or their families may say or do things that could hurt your feelings. Remember, they are under a great deal of stress, too. They are usually not trying to hurt you on purpose. By responding to them in patience, you are providing a great service.
   
4. Learn as much as you can about your people and their problems. It is important to know the life stories and possibly the family history to help you understand the reactions some people will have to certain situations. Looking at life from their perspective can be more helpful to them and can take some of the "responsibility for their happiness" off your own shoulders. Many times, discontent, depression, anger, and self-centeredness are all life patterns. Sometimes these personality traits are in response to the terrible illness they are experiencing. You will not know unless you investigate. If you were in this situation, wouldn't you like the people who care for you to understand you?
   
5. The secret to happiness is not doing what one likes to do but liking what one has to do. Sometimes you may be asked to do things that are not exactly pleasant. If the tasks are too difficult, do not hesitate to talk to your supervisor or to ask for help. However, everyone, now and then, must do things they would rather not do. Perspective helps. If you have to do it, you might as well make the best of it.
   
6. You are not alone. People "on the outside" cannot really understand the things you go through, the stress you "endure," the grief you experience, the joy you feel when doing this job. Seek the support of your coworkers. Also, look for opportunities to give support to your coworkers. Many facilities have support groups for the staff to discuss the feelings, frustrations, etc., that are a daily part of caring for individuals with memory loss. This may be a wonderful option for your facility. Make the suggestion.
   
7. Maintain a sense of humor. At times, the experiences in a long-term care facility are absurd and "silly." It is okay to laugh. It is even therapeutic. Make sure the laughter is focused at the situation or yourself and not the resident. If you do not have much of a sense of humor, you probably do not belong in caring for people with Alzheimer's disease.
   
8. Lighten up. Working with people who have a memory loss can be sometimes sad, sometimes funny, sometimes tragic, always rewarding, and usually unpredictable. Go with the flow. Relax. Be flexible.
   
9. Take time off or time away. If you are under a lot of stress at work and/or at home and the stress is not under control, you may do more harm than good at work. Stressed-out staff have difficulty working with other staff and often take it out on residents. Take a "mental health" day or some vacation time or request a transfer to another part of the facility. Sometimes the only treatment for stress is getting away for a while.
   
10. A few other suggestions:

• Assign people to people not to floors or wings.
• Be accountable to each other.
• Participate in education and training programs.
• Avoid "turf battles" (such as "That's not my job." "This department doesn't do that."). Be a team!
• Always keep the right and dignity of the residents before your own.
• Maintain open communication with family as well as with other staff and shifts.
  
  

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Just the Facts and More: Adult Day Care

Adult day care centers provide a structured setting in which people with Alzheimer's Disease and other disabilities may enjoy group activities such as exercise and craft-making, and benefit from personal counseling, therapy and other services.

Reasons for using Adult Day Care

Most likely, one of the reasons you may be considering using a day care center is to give yourself an opportunity for relief time from caregiving. Give yourself permission to use day care. Day care benefits both the caregiver and the person with Alzheimer's. By using day care, you'll have time to rest, relax, and finish other tasks.

As a result, you will return to the task of caregiving feeling refreshed and renewed. If you find yourself feeling guilty, ask yourself: "If I wear myself out to the point of total exhaustion, what good will I be to my family member? If I don't take a break from caregiving, will I be able to handle his/her needs as well?"

Reflect on the benefits of day care for the person with dementia. Remember that day care offers the person with Alzheimer's opportunities to be with other people and participate in activities in a safe environment. Moreover, professionals at a day care center can help evaluate the person and provide you with ideas for enhancing caregiving.

Selecting a center

Day care centers may vary widely, and it is important to examine the key components of the best setting for your family member. By asking the right questions, you can find a day care arrangement that's right for you and the person with Alzheimer's disease. You may want to begin with the following:

• Consult a variety of sources to find an appropriate day care center. Many caregivers rely on the recommendations of local Chapters of the Alzheimer's Association and of other caregivers who are members of support groups. Some chapters provide day care services either through their organization or through cooperation with another agency. Others consult with senior centers and local are agencies on aging.
  
• Give the center a chance. Consider using adult day care at least twice a week for a month before making a final decision. Occasional use won't give you an accurate picture of how the center operates. In addition, give your loved one time to adjust to the experience of going to the day care center. While some people may resist going to the center at first, they often look forward to the visit after several weeks of attending, meeting people, and joining in activities.
  
• Reevaluate your need for day care. At some point the person with Alzheimer's may need more care than the center can provide. Center staff and support groups can help evaluate your needs for future care.
  

Action Steps

Consider the following issues in evaluating a day care center that's appropriate to your needs:

Center Clients

Does the day care center provide services for people with different types of impairments, as well as those in good physical health? Knowing about any service restrictions before using the center may help prevent problems.

Assessment

Will the center evaluate the person's needs? How will this evaluation be accomplished and how often will it be repeated? Will it cover medical needs, social and family history, cognitive functioning, and social skills? Some centers perform assessments in the person's home.

Services

Does the center offer the services that you and the person with dementia need? These are some of the specific services you may want to investigate: (Keep in mind that few adult day care programs offer all of the services described below, and not all of these services are necessary for a program to be of high quality.)

• Behavior Management - Is the center prepared to deal with wandering, incontinence, hallucinations, sexually inappropriate behavior, or speech difficulties?
  
• Counseling - Will the center provide support for clients and families? For example, can they offer guidance on outside resources and arrange for supportive care in the home?
  
• Health Services - Will the center provide blood pressure checks and physical, dental, foot, eye, and ear examinations? Will the center dispense medication and/or offer medication reminders?
  
• Nutrition - Does the center provide nutritious meals and snacks? To make sure, you may want to sample one of the meals. In addition, can the center accommodate special diets or provide culturally specific menu? Does the center provide some sort of nutritional education program?
  
• Personal care - Will the center's staff provide help with hairstyling, toileting, eating, showering, and appearance-related tasks?
  
• Recreation - Does the center offer a program of activities that the person with dementia can participate in and enjoy?
  
• Special Needs - Is the center equipped to deal with someone who is wheelchair restricted, hearing or visually impaired, or handicapped in another way.
  
• Therapy - Will the center help arrange for needed physical, occupational or speech therapy? Are there therapists on site or on call?
  

Accessibility

Most centers are open from early morning to early afternoon, usually from 8:00 a.m. to 4:00 p.m., Monday through Friday. Some have extended or weekend hours. People may attend the center as little as one day per week, or as many as five. Be sure to ask about the minimum attendance requirements and the notification policy for absences.

Cost

Many centers offer services on sliding scales, where caregivers pay according to their ability or income. In some states, Medicaid covers costs for people with very low income and few assets. Be sure to ask about basic fees, financial assistance, and additional charges for such services as crafts or field trips.

Location and Transportation

Getting to and from some centers may consume a large part of your day and be stressful on the impaired person. However, some centers offer pickup and drop-off transportation services, while others provide transportation for outings and medical appointments. Be sure to ask about the policy for late arrival or late pickup.

Facility

Evaluate the overall appearance and quality of the facility.

• Is it warm, inviting, and free of clutter?
• Is there adequate space for activities and for furniture?
• Is space available for outdoor activities?
• Are there secured areas for outside walking?

Staff

Assess the qualifications of the staff.

• What is the number of staff for each client?
• Are the staff provided with dementia-specific training?
• Does the center have a physician, nurse, or health care professional on staff or on call?
• If the center uses volunteers, are they adequately trained and supervised?
• Are staff warm and friendly to family members and caregivers?
• How well do staff handle people with behavioral problems?

You may also want to discuss the person's specific problems with the center's director or "intake coordinator" to determine their level of disease awareness.

Evaluating day care settings for your loved one with Alzheimer's is time-consuming, but important. Choosing the best facility and program for your family member will help ease the burden of daily caregiving.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Rhonda J. V. Montgomery, Ph.D., Director, Gerontology Center; Associate Director, Schiefelbush Institute for Life Span Development; Professor, Department of Sociology, University of Kansas, Lawrence, Kansas.

Additional information was also provided by:

• The Northern Virginia Chapter of the Alzheimer's Association.
• The Duke Family Support Program, Duke University, Chapel Hill, North Carolina

For more information on this topic, consult the following sources:

• Aging Network Services, Bethesda, Maryland 1-800-477-4267
• Healthy Older People, National Health Information Center
  1-800-336-4797
• National Institute on Adult Day Care, Washington, DC 1-800-424-9046 (Ask about "Guidelines for Adult Day Care Centers Serving Individuals with Alzheimer's Disease and Other Dementias")
• Robert Wood Johnson Foundation, PO Box 2316, Princeton, New Jersey 08543-2316. (Ask about "Dementia Care and Respite Services Program" and "Partners in Caregiving: the Dementia Services Program.")
  

© 1992 Alzheimer's Disease and Related Disorder Association, Inc. All Rights Reserved.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Just the Facts and More: Grief, Mourning and Guilt

It is common for both the impaired person and the caregiver to experience feelings of loss. Persons with Alzheimer's Disease experience feelings of loss when realizing the gradual changes in their own abilities. As a caregiver, you will experience both your own loss and loss for your family member. Your feelings of loss will likely involve the natural phases of grieving: denial, anger, guilt, physical symptoms, and eventually acceptance.

As the disease progresses, and the person's abilities vary, you will notice fluctuations in your feelings. As the person loses more functioning, the realization of seeing the person depart - not through death, but through the gradual loss of memory, thinking abilities, and changes in personality, may become painful. Moving through a grieving process may help you cope with your losses. No two people grieve in exactly the same way. Therefore, an understanding of these processes may be helpful to you. Some common experiences involve:

Denial

• Thinking that the person is not ill.

Physical Symptoms

• Feeling helpless, weeping or sighing.
• Changes in appetite or sleep patterns.
• Feeling exhausted and empty.

Anger

• Feeling frustrated with your family member or the tasks of caregiving

Guilt

• Feeling despair or depression - withdrawing from social activities.
• Withdrawing from the person - investing less intense emotional involvement.

Acceptance

• Acknowledging that caring for a terminally ill family member has brought meaning to your life.
• Observing that the grieving process may impact all aspects of your life.
• Appreciating the personal growth involved in surviving life's losses.
  

Guilt

In the process of grieving and mourning, many caregivers find they are overwhelmed by one particular feeling: guilt. Common reasons for feeling guilty are:

• Feeling that something that happened in the past may have caused the person's condition.
• Feeling you should have done something differently after the person was diagnosed with the condition.
• Feeling badly that you are still able to enjoy life while the person is unable to do so.
• Feeling as if you have failed, especially if the person with Alzheimer's must be placed in a nursing home.
• Having negative thoughts about the impaired person; wishing that he or she would disappear or die.
• Feeling angry with other family members because they live far away, criticize, or prefer to remain uninvolved in caregiving.
• Feeling you had a poor relationship with the person before the diagnosis was made.

In many cases, feelings of guilt are linked with unrealistic expectations or thoughts like these:

• "I must be perfect."
• "I should have done…"
• "I must always feel love for the person."
• "I must do everything for the person."
• "I must visit the person everyday."

To help you work through these feelings, you may want to use the following suggestions:

Action Steps

Confront your feelings.

• Accept guilt as a normal part of loss and grief.
• Ask yourself these questions:
  • "Are my expectations realistic?"
  • "Did I make the best decision possible with the information I had at the time?"
  • "Does it help the situation to feel guilty or does it waste my energy?"

Find ways to forgive yourself.

• Share your feelings with a sympathetic friend.
• Accept things that are beyond your control, and make responsible decisions for things you can control. Many people turn to their spiritual beliefs for consolation.
• Complete unfinished business with others. For example, you may want to write a letter to someone asking for his or her forgiveness. (You don't need to mail the letter.) In addition, reflect on your positive and negative memories of the person with Alzheimer's.
• Learn to feel comfortable with deserving good things happening in your life. Begin to change unrealistic expectations or demands. As time permits, get involved in new or meaningful activities you enjoyed in the years before caregiving began.

For many caregivers, switching from concentrating all their efforts on caring for another person, to caring for themselves is difficult. However, caring for yourself can be beneficial to the impaired person as you can gain renewed energy and a feeling of support by taking care of your needs.

Accepting your feelings.

Remember that your feelings are normal for anyone in your situation. By learning to recognize and accept your feelings, you can begin the process of healing.

Turn to others.

• Share your grief with another person. Look to a sincere, nonjudgmental friend who will let you express yourself freely.
• If you prefer to talk to a therapist who has professional training in grief and mourning, you may want to interview several therapists and choose someone with whom you feel a special rapport.
• Talk to other caregivers and family members. This will give you an opportunity to express your feelings, share your experiences, receive much-needed emotional support, and develop new caregiving skills.
• Joining a support group offered by the local Chapter of the Alzheimer's Association, for example, may also help you combat some of the feelings of isolation and loneliness which may accompany caregiving.

Take care of yourself.

Remember that caring for yourself is as important as caring for the person with Alzheimer's disease. Here are some ways to avoid becoming a "second victim" of Alzheimer's disease:

• Return to some aspects of your daily routine; you will feel less isolated and out of step with other people.
• Bring balance into your life by doing things that bring you joy and comfort. You may want to think of your life as moving along two parallel tracks: one is devoted to caregiving and the other is devoted to caring for yourself. Be sure to schedule time to move from caregiving to the self-care track.
• Give yourself time to rest so that you will be less vulnerable to physical illnesses that may result from stress. Consider listening to relaxation tapes, soothing music, or trying deep breathing exercises to help relieve stress.
• Allow time for physical exercise, play, or spending time in new surroundings. For example, you may want to get in the habit of taking a vigorous half-hour walk.
• Let yourself laugh. Try to find humor even in difficult situations. By recognizing the humor in everyday life and giving yourself the release that comes with laughter, you can reawaken the joy of living beyond the daily chores of caregiving.
• Take time to dream. Dreaming is a healthy sign of belief in your future. Allowing yourself to visualize what is to come will help you to remember that your life is more than this caregiving experience. In the process of grieving, old dreams will be released when new ones are firmly in place.

Grieving and mourning are natural processes that caregivers experience. The length of time and when it occurs will vary with the severity and length of the disease. Understanding these processes and how to cope with them should help you provide quality care.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

For more information about Grief and Loss, see the NebGuide article from Nebraska Cooperative Extension.

The primary resource for this fact sheet was Carol J. Farran, DNSc, RN, Associate Professor, Rush-Presbyterian-St. Luke's Medical Center, Chicago, Illinois; and Geraldine Monbrod-Framburg, Caregiver, Manager, Inquiries Processing, Alzheimer's Association, Chicago, Illinois.

Additional information was provided by the following Chapters of the Alzheimer's Association: St. Louis, Mid-Missouri, and Lincoln.


Other Resources include:

• CJ Farran, DNSc and G. Monbrod-Framburg. "Loss, Mourning, and Suffering: The 'On-going Funeral' of Dementia," Self-Help -- Concepts and Applications. A. Katz, H. Hedrick, D. Isenberg, L. Thompson, T. Goodrich, A. Kutscher, editors. Philadelphia: The Charles Press, 1992.
• D. Jeanne Roberts, MA. Taking Care of Caregivers. Palo Alto: Bull Publishing Co., 1991

© 1992 Alzheimer's Disease and Related Disorder Association, Inc. All Rights Reserved.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Just the Facts and More: Vacationing

Vacations are a time for families to share new experiences, see interesting places, and get rest and relaxation. If you are the caregiver of a family member with Alzheimer's, it will be important for you to consider the stage of the person's illness, any impairments that might affect traveling, and what adaptations can be made to make a vacation relaxing and enjoyable for everyone. You will want to consider the following suggestions before you take your next vacation.

Action Steps

Plan a manageable vacation.

• Think about your expectations. If you choose to travel with the family member, you will have many of the same responsibilities you have at home. In that sense, this will be a "working" vacation. If you are interested in rest and relaxation for yourself, you may want to consider taking time away with a friend and arranging respite care for the person in your home or at a local care facility.
• Stick with the familiar. Consider vacationing in ways the person was accustomed to before the onset of the disease. For example, if the person has never traveled by airplane, it would probably be better to drive. If the person has never taken a beach vacation, choose something familiar such as a trip to a nearby attraction. Spending a short time traveling to a destination may be most helpful to the person.
• Stay away from busy places or from situations that may cause the person to feel overstimulated or anxious. In most cases, large cities such as New York, Chicago, or Los Angeles might make the person confused or anxious. Large amusement parks might also pose problems. Visiting a relative, who has a large family with a busy, bustling household, may not be a relaxing time.
• Keep your vacation simple. For example, avoid the temptation to plan a fast-paced sightseeing trip. Instead, plan a trip that involves as few changes as possible. Escorted tours can be enjoyable if you are traveling with a group of people you know well and who understand your caregiving responsibilities.
• Consider a short trip. If you are unsure how the person will react to traveling, consider a shortened version of a long trip. If the patient reacts positively, you can return at a later time for a longer visit.
• Choose a "fail-safe" option. Pick a vacation package that allows you to leave early -- without financial penalty -- if the person becomes ill or wants to return home.
• Develop a list of destinations and contact information for family members at home as well as a list of medical professionals along your travel route for you and your loved. Alzheimer's Association Chapters are an excellent source of medical and social service contacts.

Consider the needs and safety of the person with Alzheimer's.

• Advise airlines, hotels, or tour operators that you are traveling with a person who has memory impairment, and provide some examples of your safety concerns and special needs. For example, you may want to reserve a wheelchair and plan for special meals prior to an airplane flight, or let the tour operator know that your family member cannot be unaccompanied.
• Prepare identification items for your traveling companion. Make certain that your family member wears an identification bracelet or clothing tag with his/her full name and your name. You will want to keep all credit cards, travelers' checks, and passports with you for security.
• Never leave your loved one alone. If you are on a tour sponsored by your church or a local civic group, you may be able to rely occasionally on help from friends. Never ask a stranger to watch the person. A person who is unacquainted with the effects of the disease and doesn't know you or the person won't understand how to react in a difficult situation.
• Take security precautions. For example, if you are traveling by car, automatic locks are useful. To prevent the person from exiting the car, you may want to remove the locks from his/her side of the car. In most cases, the person should sit next to the driver and not in the back seat. Keep in mind that automatic windows can also be dangerous.
• Prepare your traveling companion. Telling your loved one about the trip in advance may help him/her feel part of the decision-making process. On the other hand, you may only need to inform him/her shortly before leaving with a simple explanation: "We're going on a trip together to Michigan. I'm going to start packing some of your things. Can you help me pack this suitcase?" You may also find it less disruptive simply to announce your plans on the day you are leaving.
• Time your travel. If (s)he travels better at a specific time of the day, you may want to make plans accordingly. Take breaks along the way for snacks.
• Anticipate and avoid delays. If you are traveling by train, bus, or plane, have a friend drive you to the departure point to relieve you of parking the car and handling the luggage. Call ahead to determine if your departure will be delayed. (Many people find it disturbing to wait for hours in crowded terminals.) In addition, bring along items such as magazines, audiotapes, or a deck of cards to entertain and relax your family member.
• Plan ahead for rest room use. If the person is a man and you are a woman, or vice versa, you may want to bring along a friend or family member or solicit the help of a staff member who can accompany him/her into the public rest room at a terminal. Once aboard the train or plane, see if you can accompany him/her to the rest room. It may also be helpful to provide extra protection by using adult incontinence products.
• Allow for extra time. Avoid the temptation to cram several activities into one day. Instead, plan for a single activity and have a couple of alternatives in mind if there is extra time available. In addition, you and the person may need more time in between activities to relax and rest.
• Maintain familiar eating patterns and times. If your family member is used to eating at the kitchen table every evening at home, it is probably not wise to plan for a dinner in a crowded restaurant. You may want to find a very quiet restaurant, use room service, or stay at a hotel or motel that has a kitchen available. Also, serve him/her the same type of food at the same time of day that you do at home.
• Maintain daily routines. For example, if the person bathes or showers every morning, you should try to maintain that routine.
• Have faith in your own knowledge, judgment and experience. No one knows the individual better than you do. While a growing number of hotel and tour operators have oriented their employees in dealing with persons with dementia, you understand best what does and doesn't work. Have confidence in your abilities and in your loving concern as a caregiver and enjoy your special time together.

 

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 chapters and 1,600 support groups nationwide, where family members of patients with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Liz Kendall, RN, BSN, Caregiving Program Specialist, Center on Rural Elderly, University of Missouri, Kansas City, Missouri.

Special thanks and appreciation go to the following chapters of the Alzheimer's Association: Greater Dallas, Hampton Roads, Honolulu, Manatee Sarasota Counties, and South Central Pennsylvania.

Special thanks also goes to the Duke Alzheimer's Family Support Center, Duke University, Chapel Hill, North Carolina.

Other Resources include:

• Nancy L. Mace and Peter V. Rabins, MD. The 36-Hour Day. Baltimore: Johns Hopkins University Press, 1991.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Just the Facts and More: Visiting

Visiting allows you and the person with Alzheimer's disease to enjoy the company of others. Maintaining social contacts takes extra planning and effort by the caregiver. As the caregiver, you can assist family and friends with ideas to make visits meaningful, comfortable, and to use communication techniques which will enhance their interactions with the impaired person.

Often times people may hesitate to spend time with the person with Alzheimer's because they worry about not knowing what to do or say. Others may not understand the behavior changes that are caused by the disease, and feel uncomfortable about visiting.

By working through the concerns of friends and family members, you can continue to give yourself and the person with Alzheimer's an important social outlet. Here are some tips to assist you in having visitors to your home and visiting outside of your home.

Action Steps

Invite visitors to your home.

• Don't wait for friends and family to ask if they may stop by for a visit. Instead, take the initiative to contact them and explain that while Alzheimer's Disease has changed your lives in some ways, you value their friendship and support and want it to continue. Then suggest a time when they might come over.
• Plan for a successful visit. While the visit certainly doesn't need to be perfect, it should be relaxing and comfortable for everyone: visitor, caregiver, loved one, and other family members.
• Prepare visitors before the visit. Educate visitors about how the person with Alzheimer's may have changed - physically, emotionally, and intellectually. Mention specific changes in behavior such as fidgeting, wandering or incontinence. Provide suggestions about how to communicate more easily with the person, by talking to him/her one-on-one, or by understanding that (s)he may repeat things, or ask the visitor a question already answered. This information can help lessen the visitor's anxiety.
• Clarify the purpose of the visit. Some people are reluctant to visit because they don't want to be drawn into the heavy responsibilities of caregiving. Be sure to mention that the purpose of the visit is purely social and not to relieve you of caregiving. Make sure that visitors know that their time is a momentary gift of love to the person and a gift of support to you.
• Suggest specific activities such as taking the person to lunch, sitting on the porch, taking a walk, or looking through a photograph album together.
• Remain accessible to visitors. One of the greatest fears visitors have is that they will be left alone to communicate with or care for the person with dementia. If you are close by, visitors can share specific questions or problems with you. Visitors also may want the chance to talk to you.
• Adjust the nature of the visit to the visitor. Some visitors feel they must do or bring something in order to make the visit worthwhile. You may want to suggest that these visitors bring flowers or special cards, read a chapter from a favorite book, or sing a special song. It is important that they conclude the visit feeling they have delivered something of value to you and to the person.
• Communicate with potential visitors regularly or ask them to confirm visits by calling ahead. Inform visitors that the person's condition may change from month to month, week to week, or day to day. For example, it may be better for some patients to have morning visitors, while other may benefit from late-afternoon visits.
• Be patient with people, and encourage people to be patient with the impaired person. Practice forgiveness. Even people in such caring professions as social work or pastoral care may have difficulty coming to terms with Alzheimer's. Some people whom you thought you could depend on may avoid you, while others may rally to your side. Try not to take negative reactions personally.
  

Visiting others' homes

• Prepare your host/hostess for the visit. You may want to explain that your visit may be relatively short, or that in the middle of it you may need to take a walk or shift the person's focus to another activity. You may want to bring along a favorite album, book, or audiotape to help occupy the person.
• Think of a visit as a brief vacation. Unlike vacations that often involve changes in food or surroundings, visits to others' homes provide you with a sense of "normal" life, a link with the past, and a brief, memorable time with friends or family.
• Take pictures of friends and relative to preserve a happy memory for yourself and the person.
  

Visiting the nursing home

• Get acquainted with the staff. Ask questions about special problems or changes involving the person with Alzheimer's. For example, the Activity Therapist on staff may provide you with suggestions for new activities of interest to your family member.
• Get to know other residents. Your frequent visits to the nursing home bring you into contact with many residents who may not know you personally, but may appreciate your presence.
• Depending on your time constraints, you may want to get involved with other nursing home activities, such as becoming a member of a family council, a group which works with the nursing home staff.
• Prepare friends and family members for nursing home visits. Explain how the person's condition has changed and how long of a visit (s)he can handle. Also suggest simple activities such as giving the person a simple gift, putting lotion on his/her hands, or reading a poem or story aloud. A visit to the nursing home gift shop can be enjoyable.
• Ask visitors to leave a card or note when they have visited, or provide a guest book in the person's room that they can sign. Nursing home staff may not remember who has visited in your absence. If you know visitors' names and the times of their visits, you can make a point of extending a personal thank-you.
  

Making office visits

• Before taking the cognitively impaired person to a professional office - to see a doctor, for example - work with the office staff. Advise them that the patient has dementia, and explain that the person's attention span is short and that time spent sitting in the waiting room should be limited. Ask if you may wait in an empty room. Also ask staff about parking, distance to the building, and accessibility of stairs and elevators.
• Be assertive about appointment times. Based on the person's daily routine or "best times," insist upon a morning or afternoon appointment. If the staff knows the situation, they may be willing to give you an appointment when the office is less crowded or noisy. Consider calling the office before you leave the house to check if the doctor is on time.
• Never leave the person alone in a waiting room. Consider taking a third person with you who can drive and help keep the person occupied. It is helpful to offer extra reassurance to the person with Alzheimer's because (s)he is away from the familiar environment.
• Plan for possible waiting. Even if you plan ahead, you may have to wait longer than expected. Handle the person's hunger by bringing along nutritious snacks. Take a walk down the hall or to another floor of the building. Keep the person busy with a deck of cards or looking at a magazine. Don't worry if the person fidgets or paces. His/her anxiety is normal.
• Use common sense in preparing the person for the visit. Instead of providing an elaborate explanation, simply say, "We're going to see Dr. Jones today." If the person with Alzheimer's objects, avoid getting an argument by offering a positive suggestion such as, "I need your help in explaining things to the doctor."

By preparing friends to visit the family member with Alzheimer's in any setting, you can make the visit comfortable, enjoyable, and an important part of the life of your loved one and family friends. Remember to show your appreciation to friends and family for providing you support and for visiting with your loved one.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Cindy Ulm, Regional Delegate, Board of Directors, Alzheimer's Association, Indianapolis, Indiana.

Special thanks to the following Chapters of the Alzheimer's Association: Columbia Willamette, Dallas, Los Angeles and Northern California.

© 1992 Alzheimer's Disease and Related Disorder Association, Inc. All Rights Reserved

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Services You May Need

There are many types of services available to assist you throughout the course of Alzheimer's Disease. Although you may not need all these services immediately after receiving a diagnosis, it's important to identify what's available in your community. Call your local chapter of the Alzheimer's Association to find resources in your area.

Medical Services.

Families report they are most satisfied with a specialist who is well informed about Alzheimer's Disease. This may be a neurologist, geriatrician, psychiatrist or a family doctor who is experienced in treating people with the disease.

Legal Services.

Legal planning should begin soon after a diagnosis has been made. Planning should involve putting together documents that authorize another person to make health care and financial decisions, including plans for long term care coverage.

An attorney can explain issues related to durable power of attorney for health care and finances, living wills and trusts, future medical care, housing and other key considerations. There are elder law attorneys who specialize in issues affecting older adults.

If the person with Alzheimer's has the legal capacity - the level of mental functioning necessary to sign official documents - he or she should actively participate in legal planning.

Financial Services.

Important financial decisions will have to be made throughout the course of the disease. Attorneys, accountants and financial planners can help. If possible, include the person with Alzheimer's in the discussions. Financial assistance and health care benefits may be obtained through several government sources.

There are two types of entitlement programs that persons with Alzheimer's may apply for:

1. those that provide income, and
2. those that help pay for medical expenses.

Some of these include Social Security Disability, Supplemental Security Income, General Public Assistance, Medicare and Medicaid. Contact the government agency involved directly or your local Alzheimer's Association chapter for information.

Helpline.

Trained volunteers experienced in issues related to the disease staff the Alzheimer's Association Helpline. Helpline specialists are available to offer ongoing support, suggest tips for caregiving and provide specific information on resources that may help you.

Support Groups.

Your local chapter of the Alzheimer's Association also provides support groups for caregivers and family members throughout the disease process. In some cases, support groups may be available for persons with the disease. You can talk with others who are experiencing similar situations in a safe, nonjudgmental group setting.

Information.

You can find information on everything from diagnosis and treatment to caregiving and support groups through the Alzheimer's Association. Most chapters make available an extensive collection of brochures, books and videos. You can also find information on the Association's web site at www.alz.org.

As the disease progresses, you may need help with providing care. Care services generally fall into the categories of respite care, residential care and hospice. The Alzheimer's Association can assist you in determining what type of care is available in your community.


Respite Care refers to a short time of rest or relief. It allows caregivers a break from day-to-day duties and provides the person with Alzheimer's opportunities to interact with others. Three types of respite care most commonly available are:

• Day services. Programs in adult day centers can give the person with Alzheimer's an opportunity to socialize with others, exercise and engage in simple activities.
• Home care. Visiting nurses, home health aides, homemakers and volunteers can provide services at home such as bathing, dressing or companionship while you go out for a while.
• Residential Respite. Some hospitals, nursing homes and other residential facilities offer short-term stays of a few days or a few weeks.
  

Residential Care.

The type of residential care you may need will probably vary depending on the stage of the disease. Housing services are generally grouped in two categories:

• Assisted Living. Also known as board and care homes. Assisted living is a term for residential care settings that combine housing, personalized supportive services and health care. These setting offer more services than independent living but less than a skilled nursing facility.
• Skilled Nursing. Also known as nursing home care. This type of care provides an intermediate or skilled nursing setting for those who require more services. Some are designed to provide specialized care for persons with dementia.

Hospice Services.

Designed to help people near the end of life, hospice programs combine at-home and skilled nursing services. Today, more hospices are offering specialized programs for persons with Alzheimer's disease.

Other Support Services.

Other support services may be available from your local Department on Aging, Department of Health, senior citizens' agency, religious-affiliated service agencies and patient education departments of hospitals. Also, private physicians, social workers, nurses, psychologists and counselors may provide such services.


Additional Resources:

• If You Have Alzheimer's Disease: What You Should Know, What You Should Do
• Especially for the Alzheimer Caregiver
• Caregiver Stress: Signs to Watch for, Steps to Take
• Steps to Understanding Legal Issues: Planning for the Future
  

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

The Stress Diet

A lighthearted, fun look at the "perfect" diet to help
you cope with the stress that builds during the day.

Breakfast
1 half grapefruit
1 slice whole wheat toast, dry
8 ounce skim milk

Lunch
1 cup steamed spinach
1 cup herb tea
1 Oreo cookie

Mid-Afternoon Snack
Rest of Oreos in the package
1 pint Rocky Road ice cream
1 jar hot fudge sauce
nuts, cherries, whipped cream

Dinner
2 loaves garlic bread with cheese
1 large deluxe pizza
4 cans or 1 large pitcher of beer
3 Milky Way candy bars

Late Evening Snack
Entire frozen cheesecake (eaten from the freezer)

Rules for this Fun Diet

• If you eat something and no one sees you eat it, it has no calories.
• If you drink a diet soda with a candy bar, the diet soda cancels out the calories in the candy bar.
• When you eat with someone else, calories don't count if you don't eat more than they do.
• Food used for medicinal purposes never count, such as hot chocolate, brandy, toast, and Sara Lee Cheesecake.
• If you fatten up everyone else around you, then you look thinner.
• Movie-related foods, such as Milk Duds, buttered popcorn, Junior Mints, Red Hots, and Tootsie Rolls, do not have additional calories, because they are part of the entire entertainment package and are not part of one's personal fuel.
• Cookie pieces contain no calories. The process of breakage causes calorie leakage.
• Things licked off knives and spoons have no calories if you are in the process of preparing something.
• Foods that are the same color have the same number of calories. For example: spinach and pistachio ice cream, mushrooms and white chocolate.

NOTE: Chocolate is a universal color and may be substituted for any other food color.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Twelve Things NOT to Say to a Caregiver

By Beverly Bigtree Murphy, MS, CRC, Caregiver
Courtesy of the Monterey County Chapter of Alzheimer's Association

It is time to discard the old clichés that have been imposed on us. I would like you to think about some of these statements before you use any of them. More important, I want you to challenge others when they say:

1. "The Burden of Caregiving."
   Webster's Dictionary defines "burden" as: "That which is borne or carried; a load. That which is borne with labor or difficulty. That which is grievous, wearisome or oppressive; as, my burden is greater than I can bear. The carrying of loads; as, "a beast of burden." The phrase, "the Burden of Caregiving," is used almost exclusively to describe the care of our elderly. Every time you use the word "burden" in relationship to caregiving, you are imprinting a negative image. Child rearing is a "challenge." The care of the elderly is a "challenge." Caregiving is a "challenge." We have to stop denigrating the care of our elderly as being something out of the ordinary. Our elderly deserve the same regard and love, as do our children who are just as dependent upon us for help.
   
   
2. "Let's face it, none of us want to be a burden to our children."
   None of us want to be a burden to anyone. We all hope to die without needing someone else to care for us. And while this is a universal desire, the fact remains that few of us will have that luxury. Most of us will need to be tended to by someone else before we die. Our ultimate hope is that we will not be diminished in the eyes of those who decide to help us.
   
   
3. "No one should have to sacrifice their lives for another."
   Caring for another human being is about unconditional love. It is not about being a patsy. Those of us who take on the challenge feel that it isn't a sacrifice in the negative sense of that word. Our care is about commitment and obligation. Whatever our reasons, they are ours, and they are not for anyone else to judge.
   
   
4. "Your family member would never want you to do this for them, they would want you to get on with your life."
   I actually heard this said to an 85-year-old man who had just put his wife of over 60 years in a nursing home. The support group leader failed to relate to the grief he was feeling and the comment she made only angered him. Besides, what does "getting on with your life" mean to an 85-year-old whose wife of 60+ years is still living? What does this comment mean to any of us who are caring for a family member? This statement is about justifying what feels like abandonment. It is not about comfort.
   
   
5. "It is so hard watching someone lose their dignity."
   Dignity is in the eyes of the beholder and has nothing to do with whether or not a person can dress, feed or toilet themselves. Those are simply tasks. They are not a measure of a person's worth as a human being.
   
   
6. "You will want your children to remember their grandparent as they were, not as they are now."
   This is used as an excuse to justify not visiting a frail elderly member of the family. Generations of people before us shared the aging and death experience with their elders as a continuum of the life cycle without any known perversion of their memories during happier times. We respond to what we are told to expect. If there are no expectations for connection, none happen. However, vast numbers of us experience a sense of completion and peace by being able to share the last days with a family member. Some of us learn to see it as a rite of passage, a necessary part of our personal growth. We also view it as our role in helping our family member meet their transition with dignity and grace.
   
   
7. "Isn't it time to put your person in a nursing home? How much longer are you going to keep them home?"
   I have heard this offered as a response to just about any question a caregiver can ask - from "Where do I get a wheelchair? My wife stopped walking last week and I've been carrying her around the house. I need help!" to "My husband keeps missing the toilet; can anyone in this support group help me figure out what to do?" It is as if the world at large thinks all you have to do is drive your person up to a nursing home and drop them off and voila! the care problems go away. They don't! First, those caregivers with a sense of a continuing connection with their institutionalized family member, their involvement is often magnified by the fact that the care has been transported to a "foreign" place. Second, quality nursing home care is expensive. The majority of caregivers facing Alzheimer's with a family member do not have the money, and they often don't qualify for the Medicaid entitlement. Nursing homes are not an option for the majority of caregivers, and it is not because they don't know they exist. Third, this question is rarely an answer to requests for options, information, tools, and respite, an exploration that should include examination of the home-care choice as well as the nursing home choice.
   
   
8. "Why visit him so much, he doesn't even know who you are anymore?"
   I maintain that what matters is that we know who they are. If you do nothing more than nurture and tell them you care about them, you have fulfilled your obligation as a human being. We don't wrestle with these issues in working with infants who will die, if denied nurture. We have learned that people in a coma benefit from the presence of their family members. Are our elders, particularly those with dementia, less needful of human contact, touch, and tender loving care? Loneliness is not something that disappears with old age.
   
   
9. "Don't feel guilty. You've done everything you can."
   Guilt is not the word to use. People deal with grief issues when they leave a family member in a nursing home. If these issues are explored, caregivers might find resolution to the decision they made. I believe if caregivers are given the opportunity to explore all the care options, there is less separation trauma when and if nursing home placement becomes the reality.
   
   
10. "You should get out more often."
    Isolation, lack of money, and loss of friends often leave the caregiver with nowhere to go. It is an easy solution that is often tossed off by well-meaning helpers who haven't stopped to recognize that unless the family member is taken care of, the caregiver is going nowhere. The advice needs to be given along with options about volunteers, respite opportunities and information on daycare.
    
    
11. "Enough about your family member, I want to know how you're doing."
    The primary caregiver and the family member become entwined in ways that are often not recognized or valued by outsiders. There is a deep and often very complex bond that forms between the caregiver and the family member. When well-meaning helpers exclude the family member in their attempt to focus on the caregiver's needs, it often serves to isolate the caregiver even more.
    
    
12. "You must be so relieved it's over." (Used after the family member has died.)
    A caregiver who has lived through a long-term illness with a family member is still going to experience mourning when the person dies. The grieving process they face may be different from those who face a sudden death, or the death of a child, but the loss is just as deep. To diminish this event, is to dismiss the effort they made in care as well as their connection with that person.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.