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1. Welcome - 5 minutes
- Facilitator greets participants as they arrive. Welcome them to the 4th week in the program.
2. Review of Week - 10 minutes
- Participants can be encouraged to share an experience from the past week. Facilitator can refer to last week's workshop: Communication Skills for Caregivers, and invite participants to share their thoughts on the application of the techniques.
3. Introduction to Topic - 5 minutes
Workshop 4 will focus on the idea of losses as part of the life cycle. We will look at how our reactions to losses are influenced by many factors and how these reactions can influence our relationship with others. People in caregiving situations experience some shared losses so we will examine that shared perspective. Because loss is a part of life, it can be an opportunity for growth. We will focus on some ways which help us adjust to loss/change.
4. Presentation - 55 minutes
(see #5 after presentation)
Presentation
Workshop Four - Losses as We Age
Introduction
What Does Loss Mean to Us?
What words come to your mind when you think of the meaning of loss? Encourage participants to brainstorm. Record words that are said on a flip chart. (Reminder to participants - brainstorming is an exercise which helps to introduce new concepts, there are no right or wrong answers). First and foremost, loss is a deprivation. We are deprived of something which was a part of our lives. Loss usually means change: there can be changes in roles, relationships, expectations and goals. Often loss means a change in our day-to-day routine so that we are constantly reminded of this loss in even the simplest tasks. Sometimes, a loss can mean a change is required in our patterns of communication. For example, if someone we were caring for had a stroke which affected the ability to use language (aphasia) we would have to learn new ways to get messages across. As you might expect, loss can evoke a wide range of emotions. We can feel uncertain and afraid and at other times feel a sense of peace or acceptance. We can feel very vulnerable. People often describe the feelings of loss as a "roller coaster of emotions". Certainly, some degree of personal suffering can be involved when we experience a loss. The degree of suffering depends on the nature of the loss; the impact on our lives; the type of personality we have; our coping skills and past experience; and the availability and quality of support systems. Note: Facilitator should relate some of the words participants suggested to the concepts just discussed. Loss can be stressful and painful for us but it always presents a challenge. Sometimes people find that when they are faced with a painful loss they discover resources they never knew they had. An opportunity for growth arises - while often not an opportunity one chooses, nonetheless it is part of life. An opportunity can be presented to strengthen relationships, work out old conflicts, discover new supports. However we choose to handle loss, we usually recognize that loss and change require adjustment and realignment as we search for a different focus.
Aging and Loss
Loss is not only associated with death. We can experience loss in many areas of our lives. Old age is often thought to be a time of losses. As we move through the life cycle we do experience changes that affect our lives. As we get older and older, we seem to have fewer choices. This area of loss becomes very significant to the elderly. In Workshop 2 we discussed some age-related changes that occur and emphasized that age-related changes happen from the moment of birth - not from a magical point in time, such as age 65. Losses that are related to aging are among the most predictable losses of the life cycle, yet often they catch us by surprise. Retirement is an example of a loss of one role which offers the opportunity for planning and new experiences.
Some potential losses that MAY occur in later life are:
Health (physical and mental):
The incidence of chronic disease rises as we age; although, depending on the severity of disease, most people are able to adapt to the changes required.
Functional Change:
Each system in the body shows age-related changes which generally result in a "slowing down". The functional changes can be worsened by disease, poor lifestyle choices, and environmental damage. When function is severely limited, there can be many losses in everyday life such as, for example, if people are not able to get out to do things they once enjoyed.
Independence:
People may have to rely on others for routine activities or to care for them. All the evidence indicates that independence is an enormously important factor to people. An individual's independence is threatened in the case of inappropriate housing, serious health problems, inadequate income or perhaps geographical location (for example, rural areas with inadequate transportation).
Social Network:
As individuals age so do their friends and relatives. An older person's world can shrink if opportunities to interact with other people are limited because of restrictions on activity or the death of others. Older people are more likely than younger people to experience the loss, through death, of people they know and they may have fewer opportunities to make new connections.
Family:
Much has been written about the changing family structure. Many families have members scattered in various locations around the world and so do not have access to readily available family support. Sometimes older family members may need facility-based care and be moved out of their neighbourhood to another location, separating them from other family members. Family structure and interactions also change as the older members die.
Roles:
As we age, the "parts" we play in our world change. For older persons and those with disabilities, there are changes in work roles, family roles, and social roles (i.e., community, church). All of these losses or changes require adjustment. These losses can also challenge the sense of meaning in our lives.
Some potential effects of these losses are:
Diminished self-esteem:
If older persons perceive that the changes in their lives rob them of their identity and are too much to cope with, they can begin to feel valueless or useless. This, in turn, affects their ability to interact with other people and to take an active part in everyday decisions. Unless people have alternate ways of finding meaning in their lives, their sense of identify can decrease if they no longer fulfill the role of professional, parent, spouse, or whatever held significance for them.
Increased vulnerability:
When losses make us feel frightened or uncertain of future direction or threaten our independence, we feel more vulnerable and less in control of our own lives.
Increased stress:
Coping with loss and change at any time in our lives can be very stressful. As we age and the losses happen more frequently or several may come at once, previously successful coping strategies may not be enough to meet the new challenges.
Decreased personal resources:
It is normal to experience some loss in our ability to adapt to stress (of any type) as we age. As well, with losses of social networks, friends and family members, a person's world can become smaller and obstacles loom larger.
Example: A recently widowed elderly woman may be overwhelmed with distress caused by a leaky roof because she has never handled this sort of problem before and is unsure whom to call and, more importantly, whom to trust! These tasks were once done by her husband.
Grief overload:
With every loss, we grieve. If the losses come too close together, too many at one time, we can experience grief overload. We can be temporarily overwhelmed by emotions that are too intense to handle. We may become depressed or physically ill or just plain exhausted.
The combination of potential losses and potential effects leads to a sum greater than the two parts (synergistic effect) and presents a challenge. Factors such as personality and life experience are critical in these processes. When individuals are challenged with multiple losses and their coping strategies are overburdened, behaviour changes can result. All of the remaining relationships can be challenged; extra stress and strain will be put on them. We are experiencing an era of increased longevity - people are living longer and remaining healthier and more active for longer periods of time. This brings a new appreciation for the capabilities and joys of "coming of age". It should also alert us that planning and consideration should be given to some of the predictable losses that may occur with advancing age. Losses, predictable or unpredictable, will increase as we get older.
Example: Sensory loss is a fact of life as we age. This can have a significant impact on how older persons relate to their environment. We have considerable knowledge about these changes and can take advantage of the many industry and association guidelines that promote "barrier-free" design to ensure the environment is user-friendly.
An understanding of what these "normal" sensory changes are will help prevent stereotyping or faulty assessment A hearing loss may be confused, for example, with mental deterioration because the hearing-impaired person may be acting inappropriately. When we look to those who have successfully navigated many challenges, it appears that the best strategy is to anticipate adapting one's life situation to one's changing needs.
Variables Affecting Losses
When we talk about losses, there is an implicit understanding that not all losses are the same. There are several variables that affect the degree of intensity of the loss:
Nature of the loss:
The context of the loss needs to be understood to appreciate the nature of the loss. For example, the loss of driving privileges because of vision impairment can be a tremendous blow to an elderly person who lives in a rural area with a spouse who doesn't drive. The same loss, while significant, has a different impact on the elderly person who lives with a spouse who is able to drive, in an urban setting with amenities close by. In the first case, the loss may lead to a forced move to a more accessible area, but away from what is familiar.
Nature of relationship:
Our reactions to the loss of a person through death differ depending on the type of relationship, the closeness and shared memories (whether good or bad), and on the kind of parting we've had. Sometimes, when someone has died, having the opportunity to say good-bye in the way we wished can help us to adjust to the loss. We may also experience loss in relationships in other ways. For example, when a partner has Alzheimer Disease, there are many changes in the relationship from what it once was or when a partner is admitted to a facility, there are significant changes for the person left at home.
Personal coping strategies:
It is necessary to consider an individual's personality, his/her established ways of handling problems, the approach chosen when confronted with a challenge, and his/her attitude. As well, related variables such as health status need to be considered.
Resources:
The nature and quality of the support system that is available can help us to cope with the effects of a major loss.
Extent of change in your life:
When you are caring for someone on a day-to-day basis and that person moves to a nursing facility or dies, there is a big adjustment to be made in routine. This is in addition to dealing with the loss of the relationship with the person and defined individual roles. Retirement is another example which calls for major restructuring of your routine. A sense of meaning and purpose in life are constant factors in living well. Major changes in our lives can challenge these areas.
Anticipatory Loss:
This involves a range of intensified emotional and interactional responses over the course of an illness as a result of the outcomes of the illness (could be shortened life expectancy or significant changes in behaviour as in dementia). This anticipatory loss and resulting responses can be experienced by both the caregiver and/or the care receiver (Health Canada, 2000).
Ambiguous Loss:
This term describes a type of loss that may be "invisible", thus, not socially acknowledged or recognized, often leaving those affected with inadequate support. An example may be the loss in cognitive function typical with Alzheimer Disease (AD) that may be grieved by the family but not acknowledged by others. To outsiders, it may seem that there is still a "couple", but a wife may feel very much on her own when caring for her husband with AD.
- How we react to losses varies considerably from person to person.
- What other variables (factors) do you think would have an influence on how we are affected by losses?
1. Grief - A Reaction to Loss
Grief is an emotional reaction to loss. The intensity, of course, varies with the nature of the loss. Grief involves a wide range of emotions: denial, anxiety, shock, anger, guilt, despair, relief, hatred, love, loneliness and peace. Grief is marked by the many conflicting emotions often felt.
Example: A wife feels relief because her deceased husband is no longer suffering so unbearably, yet she feels extremely lonely without him.
Guilt is almost always a part of grief: "Could I have done something differently?" Sometimes, guilt is acted out in ways that can alienate people, taking the form of aggression, anger or hostility. This can be done in an effort to protect oneself from guilt feelings. Mourning is the process by which the "grief work" is done; it is the "working through", adjustment phase. Grief can be expressed in many ways. There is a wide range of normal expression; there is no "right" pattern for grief. With normal grief you eventually pick up the pieces and move on. Sometimes people can get "stuck" at a particular point in the process and are unable to move on. In those circumstances, it may be helpful to seek some counselling with a trusted professional who has experience in these areas. Most importantly, there are no deadlines. Grief lasts much longer than we may think. As a society, we don't tolerate long grieving periods very well, so the bereaved may find support dwindling after the initial expressions of concern. We also have some difficulty with outward displays of emotion (such as tears) and so people may rein in their emotions. Sometimes well meaning people may try to cajole those who are grieving into putting on a "brave front". Grief can be a very isolating experience. For example, an elderly person who has lost her vision may withdraw because she feels no one can understand the impact this has had on her life. Coupled with reduced mobility from arthritis and a shrinking social network, this is the last straw for her! She turns away from those remaining relationships. Or in another example, the person whose mother recently died unexpectedly feels that her friends are avoiding her because they don't want to see her tears or they don't know what to say.
Rabbi Earl A. Grollman has written extensively about grief. In a recent work (Living with Grief: When Illness is Prolonged, 1997), he offers some recommendations to help caregivers who are dealing with grief to sustain their spirit. He describes grief work as being hard, taxing the whole being - body, soul and spirit. He advises people to take care of themselves and allow themselves time, on their own, to "recharge their batteries".
There are physical manifestations of grief as well as emotional effects. For example, a person who suffers headaches when stressed may experience this symptom temporarily while grieving. There has been some research to indicate that strong emotions can affect the immune system. A grieving person may be more vulnerable to infection and viral illness, for example. A person's physical or emotional response to grief will reflect his or her uniqueness. Each person must find his/her own way to deal with loss. It may be through quiet reflection and meditation, religion and/or spirituality, therapy, journaling, support groups, or talking with treasured family and friends. One essential step to manage grief is that we must acknowledge the pain it brings. Our attitude is important in determining how we react to loss. We often have no choices about what losses we experience, but we always have choices about how we react to these losses.
2. Loss as a Challenge
As with most situations in our lives, there are always positive and negative aspects. Facing a loss can be an opportunity for personal growth. Out of chaos comes order... Some people view the inevitable losses we face in life as the "character builders". While dealing with losses, you may discover personal strengths and resources you never knew you had. Out of every challenge in life - good or bad - comes change. We live in a constantly changing environment. The key to surviving in a way that fosters well-being is through compromise and adjustment. Losses affect all spheres of our lives including our relationships.
3. Sharing Loss: Perspective of Caregivers and Care Receivers
When we talk about changes and losses that occur as we move through the life course, we become more conscious of the changes that occur in the caregiving situation. Both caregiver and care receiver are affected by the changes and losses encountered in caregiving situations, requiring adjustments and adaptations. There are effects for other family members as well. The issue of caregiving sometimes raises the spectre of loss of independence, a threat that produces anxiety in many people. Some of the losses/changes that are shared by care receiver and caregiver include:
Loss of Previous Roles:
A daughter who is caring for a very frail mother may sometimes feel that the mother-daughter roles are reversed. A person caring for a spouse has to adjust to a very different existence, take on new responsibilities and alter pre-existing expectations. The care receiver must also adjust to the changes in his/her roles, "letting go" of some responsibilities and tasks.
Loss of Health:
It is usually a decline in the health status of the care receiver which precipitates the caregiving situation. In response to the increased demands and stress resulting from providing care, the health of the caregiver may be affected as well. Caregivers may experience fatigue which affects their ability to cope, and leaves them more vulnerable to illness.
Diminished Freedom:
Both caregiver and care receiver experience losses in their freedom; the caregiver may be unable to get relief/help if the care receiver needs constant attention. Both can feel powerless. It is the feelings of loss of control and powerlessness that are so demoralizing and so compromise our ability to cope with any change.
Reduced Income:
It is not uncommon for the caregiver to have to give up paid employment in order to provide continuous care. Also, there may be increased "out-of-pocket" expenses to accommodate the care.
Limited Diversions (social contact):
The care receiver may have had to move to the caregiver's home in another town or city in order to receive the needed assistance. They may have few contacts, outside of family members, in the new location and limited opportunity for making new acquaintances. Even if the care receiver remains in his/her own home, a diminishing social network and failing health may prove isolating. For the caregiver, the extra demands of caregiving in an already busy schedule may mean that social activities are reduced or eliminated. If the care receiver cannot be left alone, the caregiver may become quite isolated, especially when respite care is not available. Even when some respite care is available, it is usually for short, infrequent periods.
Loss of Independence:
Independence is a precious commodity. It is an important part of our adult existence, but as with other areas in life, people react to a loss in independence in different ways. This can be a difficult area for both the care receiver and caregiver. Both need to adjust to changes in their independence. The ability to make choices is a significant factor.
Limited Autonomy:
Autonomy is the freedom we have to make choices in our lives. While related to independence, it is not the same. A person may be dependent on receiving care in the day-to-day routine, but autonomous in making decisions about his/her health care, for example. Sometimes, in a caregiving situation, the individual's freedom to make decisions may be affected. Whenever possible, including all parties in the decision-making process (about health, financial or other planning matters) helps to mitigate some of the losses and fosters positive adjustment. While faced with their own challenges, caregivers still need to recognize the care receiver's needs for some independence, autonomy and dignity.
Loss of Dignity/Privacy:
In addition to these shared losses, the care receiver's health problems may lead to physical discomfort or pain and sometimes embarrassment. Problems with body functions such as incontinence may be extremely traumatic for some people, while for others they may be just a nuisance. Privacy for personal relationships may become curtailed in caregiving situations as well.
4. Effects of Loss on Behaviour
An individual's behaviour is the product of many complex factors. We adapt our behaviours to cope with changes we experience throughout life. Sometimes it can be a struggle to keep our sense of "self" when the losses and changes occur rapidly and frequently. A person who is fiercely independent and feisty may find it a difficult task to adjust to the reality of receiving care - it challenges perceptions of self. At times, losses we experience can be overwhelming and can even distort our perspective - usually only temporarily. Sometimes people will exhibit a whole host of new behaviours as a way of coping with losses to which they cannot adapt in the short-term. Although these behaviours may be ineffective, they persist - to the distress of all affected. Some examples include:
- Paranoia: The person thinks everyone "is out to get him/her".
- Projection: The person attributes or projects her feelings or motives on someone else. ("I know you hate caring for me.")
- Defensiveness: The person tries to protect himself from dealing with difficult situations; may insist s/he is coping perfectly well when it is obvious s/he is not.
- Depression: The person turns un-vented anger inward and can become passive. ("Why bother to adapt?")
- Aggression: The person can become verbally or physically abusive as a way of "fighting" against the situation.
- Hostility: The person can be overtly hostile ("I hate you"); or can disguise hostility by being too sweet, too compliant, etc. ("I'll do anything to please you, dear!")
- In the caregiving experience, these types of behaviours can lead to emotionally destructive situations, not to mention a great deal of stress.
- The good news is that the human spirit is extraordinarily resilient. A person's personality and life-long coping skills are key factors in surviving yet another challenge and many people find successful and healthy ways to adapt and cope to changing circumstances.
5. Developing a Positive Focus
It is possible to take control of a situation and diminish some of the feelings of powerlessness and vulnerability that many losses can produce. The most critical step is planning - a process that can occur throughout the life course. When we don't plan for some predictable events, we leave ourselves at the mercy of circumstances, and relinquish some freedom and self-determination. People can plan their housing arrangements, for example, or they can plan for retirement. They may also have discussions around "What if...". Planning and discussion offer valuable opportunities to share values and priorities. The process of planning can be rewarding and a great learning experience. Being involved in decision making about our lives reduces our feelings of vulnerability. For example, when faced with a move because of changing needs, older people may embrace the adjustment process more openly if the decision to sell the family home is theirs, rather than having it foisted on them by well-meaning family members. Worse still, when not included in the decision, they may feel as if they had been "tricked" into the move and respond with anger and resistance. Losses are as much a part of our life as the joys and rewards. Part of life is also embracing the need to grieve. The fact is, despite the losses that everyone faces at some time, life does go on. Throughout life, we are faced with choices about whether we deal with what life hands us or we give up. Responding to a crisis or loss can actually strengthen our confidence in our ability to respond to challenge. Perhaps one of the most important factors in helping people to cope with loss is knowledge. When we understand what is happening, our reactions and our choices, a situation is not so frightening. No one escapes facing some type of loss in life. We can help prepare ourselves for dealing with loss through education (including workshops such as this), by examining our philosophy of life, and by looking at our priorities. When we are experiencing losses we need to listen to our feelings and our bodies. We need to be kind to ourselves. Caregivers often forget that taking time for themselves is a necessary health promotion activity, not a selfish indulgence. We need to give ourselves permission to grieve for our losses. It is not necessary to keep up a "Pollyanna" front for the world. That makes it doubly hard for others to express their feelings. Each individual can develop a personalized action plan for dealing with life's challenges:
- First, recognize your resources (personal strengths, support system, available information);
- Second, decide what you want to achieve and identify priorities;
- Third, trust your feelings;
- Fourth, draw on the knowledge you have gained from past experiences; and
- Fifth, be an active participant in life.
5. Nutrition Break - 10 minutes
- Participants will have refreshments and share experiences with others.
6. Discussion of Presentation - 45 minutes
Participants can be invited to reflect on ideas presented in Workshop 4. Encourage them to identify what areas are relevant to them. Facilitator might focus on the shared losses in caregiving to direct the discussion. The group can take a problem-solving approach to the individual concerns that arise. Participants can be invited to consider their own growth from their personal experience with loss. They have accepted the challenge of increasing their knowledge by attending these workshops. In what other ways have they made conscious decisions to adapt/adjust to change? Many people say that a loss in one area of their lives can lead to improvements in other areas
Possible Question:
7. Evaluation of Workshop 4
- Participants are asked to complete evaluation forms and leave them in a designated area.
8. Closing Remarks - 10 minutes
- The topic next week will be Caring for Someone who has Dementia.
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