Volume 5, Issue 4 - The Ribbon Newsletter

Symbolizing the way we are all woven together
in our fight against Alzheimer's Disease

Volume 5, Issue 4
February 21, 2001

www.TheRibbon.com

Strategies for Managing Stress

In general, professionals who have extensive experience working with caregivers agree on five basic strategies to help control the destructive effects of stress. They are:

1. Set Realistic Goals and Expectations

Plan Achievable Goals

What do you want to accomplish? The basic goals of caregiving are to assure the care receiver's quality of life, physical comfort and safety. These goals can be accomplished in many ways. For example, you may be the direct provider or you may be a "care manager" who arranges, coordinates, and monitors the services your family member requires.

In setting goals it's important to consider how caregiving is likely to affect other areas of your life. How is your health? What is your relationship with your spouse and children? What other demands and obligations do you have? Are you employed? Preventing caregiver burnout means accepting the limitations of what you can accomplish.

In addition to understanding yourself, you also need to know how the illness or disability affects your family member. Objectivity about your situation is important, but not always easy. You need to know what is likely to occur medically and behaviorally now and in the future. For example, sometimes a mentally impaired person's behavior or mood swings can be baffling. It can appear that he or she is intentionally being difficult, acting helpless, or refusing to communicate. If this behavior occurs, consult with a professional who is knowledgeable about your family member's condition. A professional can often assess whether behavior is intentional or disease related and therefore unintentional. By determining the reason for behavior, you can adjust your expectations and responses.

You will see results more often if you select goals that are specific and achievable. Specific goals are short-term and focused on a clear problem. If you have only broad long-range goals, you are more likely to experience frustration. You may have a long-range goal of getting your father back to his own home, if possible. However, some specific, achievable, short-term goals might include:

Keeping your father's spirits up by arranging for friends and family to visit.
Developing your father's physical strength by arranging for people to take him on daily walks. The degree to which short-term goals are accomplished will help you assess the practicality of long-term goals. Professionals involved in the care of your family member can help set realistic short-term goals.

Goals also need to be considered in terms of the ill personality and capabilities. Some caregivers are driven by goals such as "make mother happy". Given mother's personality or the accumulation of recent losses, this may be completely unachievable. Such an objective creates a heavy burden and you'll probably feel that you'll never attain it. A specific and achievable accomplishment, however, might be to provide a pleasurable activity at least once a week for your mother, perhaps spending 2 hours each week doing something enjoyable like visiting friends or working a puzzle. If you set such specific goals, you are more likely to feel satisfied with your progress.

Develop Realistic Expectations

How realistic are your expectations? Do you often feel if only you could do more, things would be better for your family member-your mother would be happier, your father less confused, your spouse less depressed? Do you sometimes think, "Mother took care of me when I was a child, I should be able to care for her as well as she took care of me?"

Caregivers frequently struggle to balance their self-expectations with what they can actually achieve. Sometimes we expect too much of ourselves and we get into a state of constant worry or anxiety because we think we are not doing what we should. Women caregivers are particularly vulnerable to "shoulds". Because of the way females are raised in our society, women caregivers often believe they should be able to do everything themselves. When unable to do so, they feel guilty or depressed.

Sometimes old promises drive us to do more than what is realistic. Promises can get in the way of objectively assessing the current situation. They reduce our objectivity and ability to make the best decisions for everyone concerned. It's important not to let old promises, "shoulds," or guilt guide caregiving decisions.

If an old promise, such as "Mom, I'll never put you in a nursing home," is creating difficulties for you, compare the current situation to the situation when the promise was made. You'll probably find the situation has changed considerably. If it hasn't changed, it might indeed be possible to fulfill the promise. However, the promise made under one condition may not be viable under the current situation because of changes in your family member's health or in your life circumstances.

2. Establish Your Limits

You have a right to set limits on what you will do! It's all right to say "no". Taking these steps, however, can be difficult, especially if you must make painful choices. There are times, of course, when it's necessary to go beyond limits. When additional resources simply are not available, you may not have a choice. In general, however, providing care at the expense of your mental and physical health or relationships with other family members does not benefit anyone!

When you set limits, it's important to communicate them to your family and to your ill relative. This may be particularly painful to do with a parent or spouse. But remember to not do so will only increase your stress.

Discussing limits in caregiving is usually easier if you consider other ways in which your relative's needs can be met. Share information about those options at the same time that you talk about your limits.

3. Ask For And Accept Help

How do you respond to offers of help? Is it difficult to ask for assistance? When you do request support, are you specific enough so people know exactly what you want? Do you expect close family members to know when you need help? Do you refuse offers of help, but feel exhausted or resent not receiving assistance? Do you feel "I should be able to do it alone"?

Resistance to accepting help is a common cause of stress and depression among caregivers. In our culture, with its emphasis on "independence" and "doing it alone", it's not easy to request help. Some caregivers view asking for help as a sign of helplessness, inadequacy, or failure. Actually, asking for needed help is just the opposite. Knowing your limits and reaching out for assistance before you are beyond your limits is an important characteristic of a strong individual. It also helps ensure quality care for your family member.

Being a martyr benefits no one. Refusing help will not make you a better caregiver- it will make you exhausted and probably irritable.

Family members, neighbors, and friends are often willing to help. But sometimes people hesitate to ask if they can help because they are frightened by illness, feel uncomfortable around the ill person, and don't want to interfere, or don't know what they can do. You may have refused earlier offers of assistance, or you may appear to have everything under control.

People can best help if you tell them exactly what your needs are and how they can help. Be specific and positive. When family or friends ask how they can help, make a specific suggestion. For example, say "Could you visit with mother for an hour so I can go to the store?" or "When you go to the store could you pick up a few things I need?" Tasks unrelated to caregiving may be easier for some people. If you can be flexible, ask when would be the best time for them. It's also important to show appreciation for any help received. Let people know how much their support means to you.

People are always less likely to respond to requests that are demanding, manipulative, or guilt-provoking. One of the least productive attitudes a caregiver can have is to expect others "to know" when help is needed. People are not mind readers. Keep in mind too, that others may have obligations or problems of which you are not aware, but which limit the assistance they can provide.

4. Take Care Of Yourself

Express Your Feelings

It's very important that you find someone you can talk openly about your situation and your emotions.

Understand your emotions: Being a caregiver and seeing the decline of a loved one is not easy. Almost every caregiver experiences a wide range of emotions, some of which are conflicting, confusing, and ambivalent. You may feel love, sadness, frustration, dislike, repugnancy, guilt, grief, fear, resentment, hopelessness, or despair. You may feel angry about the increased dependency of your family member and the multiple demands on your time, energy, and money. As changes occur in your family member, you may grieve for the loss of your relative as he or she used to be. Feeling unappreciated is sometimes a problem for the caregiver, particularly if the ill person expresses only dissatisfaction or is unable to show appreciation.

These feelings are normal. They are neither good nor bad, nor do they reflect the degree of your caring. Feeling angry does not mean you love your relative less. What is important is how you handle your feelings. Learning to express feelings and to deal with tensions in constructive ways is vital to your emotional and physical health.

Stress has fewer negative effects for people who admit their feelings and accept them. When you acknowledge and understand your emotions you can then control them. Repressing and denying feelings decreases energy, and can cause irritability, depression, or physical problems. Your feelings can also greatly influence your judgment.

Some feelings are very hard to share directly. If this is true for you, find an indirect way to do so-write them down, get involved in vigorous physical activity, chop wood or punch a pillow.

Use assertive communication: Feelings should not be expressed in a manipulative or hostile way, to get even with someone, or to create a sense of guilt. Such responses are not constructive and may indicate you are stuck in an "anger trap". To avoid the "anger trap", use assertive communication. When conflicts arise, talk about them with those involved. Express yourself in terms of your own feelings. Use "I" statements and describe specifically whatever is bothering you. For example, "I was upset when you didn't make the doctor's appointment for mom that you said you would."

Avoid "you" or blaming statements that imply others are responsible for your feelings. Blaming statements such as "you don't care about Mom," "you make me so angry", "you never follow through on anything" or "you always let me down" sound accusatory and tend to create defensive arguments. Saying "I feel, I need, I expect, I choose, I believe", is more effective and less threatening. Aviod using terms like "always" and "never"-the person will usually deny these statements because "never" and "always" are rarely true. Assertive communication encourages problem solving.

Recognition and appreciation are important needs. If you do not feel appreciated, you need to let others know. Ask for positive feedback. If the care receiver is able to communicate, tell him or her your feelings.

Join a support group: Most people benefit from sharing their feelings with someone who is supportive and listens nonjudgmental. Such sharing with a confidant often relieves tension, helps give a new perspective of the situation, increases mutual understanding, and builds support.

In some areas, support groups have developed for this kind of sharing some groups are oriented to specific diseases like cancer, Parkinson's Disease, lung disease or Alzheimer's Disease and related dementias. Others are for family caregivers in general. Many caregivers find that support groups help them feel less alone. Support groups give an opportunity to share openly with others who understand and to learn techniques for coping. They also provide an opportunity to share your knowledge and to help other group members. Information and local support groups maybe obtained by contacting a local hospital or home health agency.

You can learn more about support groups by contacting your local Area Agency on Aging or Alzheimer's Association in our Neighborhood Networks. ElderCare Online also produces several online discussion groups where caregivers get together to discuss important topics, relieve isolation and meet others who are carign for aging loved ones. The schedule of chats is posted in the ElderCare Community Center.

Maintain your health

To provide effective care, it's vital that you maintain your own health. Neglecting your health has long-range consequences, not only for you, but also for the person who needs your care. Proper diet, sleep, excersise, and attention to your health problems are essential.

Without adequate nutrition and rest, you will feel exhausted, discouraged, and depressed. If interrupted sleep is a major problem, find someone who will provide occasional or even regular night duty.

Exercise has many benefits -- it promotes better sleep, reduces tension and depression, lifts spirits, and increases energy. If you feel that exercising would be just one more demand, think of ways to incorporate it into your daily routine. If your family member is physically able perhaps you could walk together. While talking on the telephone or watching television, do stretching exercises. Relaxation techniques are another way to reduce stress. Find an activity you enjoy, so exercise becomes a pleasurable event for you. Do it 20 or 30 minutes three times a week.

Humor is a powerful antidote to stress. Laughing quickens the pulse rate, stimulates the blood circulation, activates muscles, increases oxygen intake, and forsters physical relaxation. If you have forgotten how to laugh, try to be around people who still know how- it's contagious.

Take time for yourself

Do you value yourself and your personal needs? What do you do for personal renewal? Do you save some time for yourself out of each day and take occasional extended breaks? Or are you so involved with caregiving tasks that you have little or no time for yourself?

All too often, caregivers place their own needs last. Helping an elderly relative should not mean giving up all activities and relationships with other people. Studies show that sacrificing one self in the care of another and removing pleasurable events from ones life can lead to emotional exhaustion, depression, and physical illness in caregivers. Taking breaks from caregiving is essential for both full-time and part-time caregivers. You have a right - and even a responsibility - to take time away from caregiving.

Refusing to take breaks for self-renewal can be detrimental to the care receiver as well as to yourself. It can increase the dependency of the care receiver. The ill person who sees few people regularly may benefit from being with others while you take a break. Sometimes, too, the care receiver will be more responsive with another person. For example, he or she may participate more actively in rehabilitation exercises in your absence.

Objective evaluation usually shows that others can provide adequate care, at least for a short time. If you hesitate to leave because you are concerned about what might happen while you are away, ask yourself, "What is the worst possible that could happen?" Then make contingency plans for handling "the worst".

Consider getting breaks early in caregiving. If you wait until you are burned out, these breaks will not be enough. It's important to make a plan for regular breaks, decide on the time, date, and activity - then follow through!

Finding appropriate substitute care takes time and preparation. In some areas, community respite care has been developed to provide in-home or out-of-home support. Respite services may be available for a few hours, a day, overnight, weekends, a week or longer, and on a planned or emergency basis. Respite providers may be trained volunteers or paid staff.

In-home respite care can include companion type or supervision services or the temporary use of homemaker and/or home health services. It has the advantage of keeping the person in familiar surroundings. Out-of-home care includes adult day care or short stays in adult foster care homes, nursing homes, or hospitals.

Regardless of the respite care services you select, you will want to prepare for the service by answering these important questions:

What type of help do I need (regular or occasional)?
What times would be best for me?
How much advance notice do I need to give the substitute care provider?
What information should the respite provider have about the elder’s special needs and routines?
How should the respite provider deal with an emergency (who and where is the back up)?
How can I prepare the older person for my leaving?

If you've always been available, you may need to prepare your family member for your leaving. You might try a "trial period". Have the substitute care provider visit a few times while you are present or take only a brief break in the beginning to see how the arrangement will work. If your relative protests your leaving, you will want to acknowledge his or her feelings, but state your need for a brake. For example, you might say, "Dad, I know its hard to have me leave, but I am exhausted and I need to get away for awhile". For the memory-impaired person, it may help to leave a note indicating the time you will return.

5. Involve Other People

Hold a family conference

Although care for an older person maybe provided primarily by one person, all family members should be involved in the planing and continual support. One strategy for deciding how to share caregiving responsibilities it the family conferences.

Family conferences should be held as early as possible after the need for caregiving arises. The conference gives everyone an opportunity to discuss caregiving concerns, identify potential problems and solutions, and negotiate the sharing of caregiving tasks. The conference can also clarify each person's expectations and minimize misunderstanding.

Include everyone. Everyone who is concerned and may be affected by care decisions should be involved in the family conference. Siblings, spouse, other relatives, housemates, neighbors, close friends, and the person for whom plans are being made should be involved. If illness prevents the care receiver from being involved directly, you should get his or her input and keep him or her informed. Remember, having as much control as possible over our lives is important to all of us, regardless of our age or illness.

A family member should not be excluded from a family conference because of distance, personality, family history with the older person, or limited resources. It's just as important to include a difficult argumentative family member, or one, who never visits, as it is to involve those who are supportive.

Telephoning distant relatives to get their input and to keep them informed will help them feel a part of the decision-making. Involvement of all family members in developing a caregiving plan ensures greater success and support for the plan, and helps prevent later undermining of decisions.

Consider a two-step conference. Sometimes families find it helpful to hold a two-step conference. The first meeting is held without the older person for the purpose of airing ideas and feelings, identifying concerns, looking at gaps in information, and discussing responsibilities for each family member. The purpose should not be to make the decision or to "gang up" on the older person. A second meeting is then held with the older person, who is actively involved in looking at the options and making decisions.

Plan for success. A family conference is most successful when you give attention to these considerations:

Before the conference, ask family members to list their concerns and tasks they are willing to do.
Hold the conference in a neutral place. Holding the conference in the older person's home will help give him or her a greater sense of control.
Create a feeling of support and confidentiality.
Keep the conference on the current rather than on other issues or past conflicts.
Be certain everyone has the opportunity to express feelings, voice preferences, and offer suggestions without being "put down".

Focus on the positive. Identify what each person can do, but encourage everyone to be honest about their limitations. Sharing information about other responsibilities can help others understand why the support must be limited.

Prepare a written plan listing what each person will do and when he or she will do it. Keep it flexible. A written plan can prevent later disagreements about whom agreed to what, and can better assure that needed tasks will be completed. Realize there may be conflict. A family conference is not always easy, and in some families, it is impossible. It's most difficult for families who have never discussed feelings and family concerns. Where conflicts already exist among family members, decision-making is difficult. When family members come together after years of separation, old conflicts can re-emerge with regard to relationships, family roles, expectations, and even inheritance.

Family members often have different perceptions about the care needs of an older person, the best care option, the division of care tasks, and how money should be spent. For example, one brother might not want a parent's resources- his potential inheritance- spent for in-home services. He may prefer that the family provide the needed care, while another brother feels "Mom's money is there to spend on her" and prefers to purchase care services.

Beliefs about "what is best" often differ, creating conflict. One person may feel that the impaired person should be kept at home, regardless of what needs to be done; another may feel that a different living arrangement is needed for the person's health and safety. Intense conflicts often result when one person insists that the older person be maintained at home and another is fighting for nursing home placement. Bringing in an objective third party skilled in working with the elderly and their families can often help.

If family conflicts or hidden resentments prevent rational discussion, seek professional guidance. A counselor, health or social service professional, or member of the clergy trained in family counseling can help you deal with family conflicts. He or she also may be able to guide the family conference.

Obtain Professional Guidance

Receiving professional advice and assistance can help reduce some of the causes of stress. You should consider seeking professional guidance under the following circumstances:

You find yourself using alcohol or drugs to forget about problems, relieve stress, fall asleep at night, or get yourself going in the morning. Substance abuse can impair your judgement and contribute to your feelings of inadequacy and guilt. It can also result in neglectful or abusive behavior.
You become depressed. Untreated depression can negatively affect your health and your responses to the ill person.
You don't understand your family member's behavior or don't know how to deal with specific care tasks.
You find yourself feeling resentment or losing emotional control, or neglecting, humiliating, or becoming physically rough with a family member. These behaviors are often caused by exhaustion, stress or lack of resources.
You are being physically or emotionally abused by your impaired family member.
Your family cannot resolve problems or reach agreements on care decisions.
You feel a conflict between caregiving and other responsibilities.

A professional can often help you gain objectivity and a clearer perspective of the situation. Don't be afraid to seek help and don't wait until you are overwhelmed by a crisis. Getting help is a sign of personal strength, not weakness, and will enable you to be a more effective caregiver.

You can obtain the names of individuals skilled in working with older adults and their families through senior centers, hospitals, health, family, and social service agencies. When you call a professional, state your specific need and ask the person about his or her training and experience with your problem. If the person is unable to assist you, ask for names of others who can help.

Use Your Community Resources:

In recent years, a range of community services has developed to help older persons and their families. Specific programs designed for caregivers include respite care programs and support groups, as previously discussed. In addition, programs designed to directly serve the elderly can help the caregiver. Paying for outside assistance early in the caregiving process is generally less expensive then if you wait until you become overwhelmed and exhausted. At that point, your options are likely to be fewer and more expensive, and you may be paying health bills for yourself as well as for your relative.

Available services vary between communities, but some of the most common include:

Companions or friendly visitors provide companionship, friendship, support, or supervision to older adults for a few hours. In some areas, paid companions are available to stay through the evening and night. For older persons living alone, friendly visitors can provide a safety check as well as companionship. In general, they do not provide housekeeping or personal care services.
Telephone reassurance provides regular telephone calls to home-bound ill or disabled persons.
In-home medical alert program ["Life-line"]- the impaired person wears an electronic device that sends a signal to a central dispatcher, often located at a hospital, if he or she falls or needs help. Emergency assistance is summoned if the older person does not answer the telephone.
Chore services provide help with yardwork, minor home repair, and winterization. In some areas, chore services also include assistance with household chores, grocery shopping, laundry, meal preparation, and cleaning.
Homemaker services assist with light housecleaning, shopping, laundry, and food preparation.
Home health aides provide help with personal care activities, such as bathing, feeding, walking, and tioleting. Aides provided by a certified home health agency are trained and supervised by a registered nurse.
Home-delivered meals are nutritious meals delivered to home-bound elders, usually around the lunch hour. The days for home-delivery of meals vary from one area to another.
Congregate meals provide inexpensive, nutritious meals in a group setting in senior centers or other community settings. Transportation is often available for those unable to drive. Frequently the mealtime includes recreational and social activities.
Transportation services provide vans or buses that can be called to transport to and from doctor's appointments, rehabilitation sessions, congregate meals programs, and sometimes grocery shopping and other activities. Transportation services must be scheduled in advance.

Adult day care- a special program for people who are either physically or mentally incapable of independent living and need protective services during the day. Programs vary, but often offer health and medical monitoring, meals and recreational group activities. The program enables some caregivers to continue their employment and care for their relative at the same time.

Day treatment provides assistance to individuals who are mentally ill or have a mood or thought disorder that significantly impairs judgement or behavior. Psychosocial rehabilitation is provided to assist these people in their daily life.

Home health nurses offer health assessment and home health care to persons who need nursing care at home. If needed, other services such as physical therapy, speech therapy, and home health aide services are provided. Some of these programs require a fee, which may be on a sliding scale that is determined by a ability to pay. Other services may be free or have a voluntary donation because they are provided by volunteers, government, or charitable organization. Some programs also have age, income, or other eligibility requirements. When calling an agency, state your needs as clearly as possible and remember to ask about eligibility requirements and costs. Contacting agencies requires considerable time and energy. If you feel you don't have time to make the necessary calls, enlist the help of other family members and friends. They can help make the contacts or provide care for your family member while you call.

Your local Area Agency on Aging is a good place to find out about programs and services in your community. It may also be called Senior Service Division, Aging Services, or the Office on Aging. Use the telephone prompter on the back page to help you get the best information from agencies.

ElderCare Online's Neighborhood Networks provide state-by-state listings of local resources for family caregivers, including insurance counseling, transportation services and Alzheimer's Disease resources.

If an agency representative can not answer your questions, ask to speak to the supervisor. Avoid becoming irritated or angry. Say something like, "I appreciate your assistance, but I'd like to ask your supervisor some additional questions." If the supervisor is not available, you should ask for the best time to call back. Before you hang up, ask if there is a direct telephone number for the supervisor.

Whether or not you presently need assistance, explore community services for future needs. Find out about services offered by public and private sectors, and record the information for future use. You never know when you may need a service, and in a hurry.

Source: Oregon State University
Available from ElderCare Online™
http://www.ec-online.net/

Email Bag

From LBAUER007@hotmail.com

Can anyone help me? I understand there is a company that has toys and other things specifically for people with Alzheimers. if anyone knows anyything about it can you email me back.

Laura in Ca.

From Charbeaner

Kind of stumbled onto this site while searching for a place to find clothes for my mother who has AD. I need things that are easy to put on (elastic waist pants, etc.).
Is there such a catalog that you are aware of?
I am also having alittle trouble getting into chat, etc. Would love to correspond with someone who could just be someone to talk to. My father is still living and is her primary caregiver.

Thank you so much--
Char

That's all the space we have for this newsletter. There's more email to be included in the next issue.

Hugs and Peace,
Karen and Jamie