(First of a two-part series)

Being a caregiver can be more difficult and stressful than you ever expected. This is partially true because it is hard to take care of someone whose needs intensify and whose condition worsens. Add to this a lack preparation and unrealistic expectations, and you can set yourself up for disaster. Nevertheless, every day new caregivers learn to cope with the challenges they face by understanding and acknowledging their emotions.

In our busy, mobile society, we have multiple roles and responsibilities where time pressures make us less available for caregiving. We are not all imbued with the skills and traits required for caregiving: planning and organizing ability, patience, tolerance to frustration, desire to nurture and "thickskinnedness." Our physical, financial, and time resources are not the same. Yet we are selected (and often select ourselves) from the pool of available people often whether we fit the role or not.

Joan is a 57 year old, divorced mother of a learning disabled teenager. She never worked outside the home before her divorce so she is having trouble finding employment. Her 84-year-old father, who lived alone, has been diagnosed with Alzheimer’s Disease and is becoming more demanding. Joan’s only brother lives out of state and is busy with his own family, so Joan was selected as the caregiver. Now she finds herself frazzled trying to meet the demands of her own household while trying to help her father. She had never been good at planning and organizing. Recently she has been irritated and anxious. She feels she will never catch up with what needs to be done and feels overwhelmed.

Once "delivered" the caregiver role, your beliefs and expectations will affect how you cope. Typically we believe that as caregivers, (as with anything we undertake) if we work hard, things will get better. We also expect that we will be acknowledged and appreciated for our efforts, that we will make a difference in our loved ones condition and that we will have some control over the situation. The difference between what we expect and reality can set us up for frustration, anger, guilt and disappointment among other emotions. Caregivers often have little previous knowledge of the scope, demands, and intensity of our new role.

There is a paradoxical commitment/exhaustion ratio: Those who are most committed and involved are most likely to become emotionally and physically exhausted. The myth that the harder you work and "the more you put in, the better it gets," does not work here. In fact, if you get hooked on this myth, you will neglect other important aspects of your life, put your self-esteem at risk, and find yourself confronted with emotional reactions, which add to your stress.

Acknowledging Your Emotions

To really gain some measure of control over your emotions you must first acknowledge and understand them. You must identify and accept that strong emotional reactions are a part of caregiving.

Emotions can be positive or negative. They range from joy, passion, and hope to anger, depression and guilt. Emotions are not necessarily rational. The intellect can say, "I shouldn’t be angry with my impaired loved one," but emotions can do their own thing – wherever, whenever and however they will. As a caregiver you may not want to talk about or even acknowledge your negative feelings. You deny, keep busy, defend against them. Too often though, these are short-term fixes, and emotions catch up with you anyway.

Frequently caregiver families respond to a diagnosis of Alzheimer’s Disease, multiple sclerosis, cancer or other chronic condition with denial. This translates into the initial hope that here will be an answer, a cure or a way to make things better. Denial at this point is not necessarily bad because it provides time to regroup before beginning to cope. When denial begins to break down, either because reality breaks through or because you are ready to look at the situation, you may experience a mixture of fear and anxiety.

Fear and Anxiety begin when you are confronted with the fact that a loved one’s physical condition and safety are at risk. Fear is a general state of alarm and is accompanied by confusion and a feeling of being overwhelmed. Anxiety is both a general response to the feeling that things are going to be bad, and a specific response to concerns such as "I won’t be able to do it," "I don’t have the time, money, etc.," and/or "This will not get better."Anxiety is a signal that we are unsafe and vulnerable. The "at risk" condition of a loved one, becomes our own.

After initially feeling anxiety, you will begin to mobilize resources and solve problems. There is comfort in having a plan and beginning to do something because caregivers often are not prepared for the frustration, the lack of progress, and the roadblocks that they encounter. Having a plan for medical care, organizing important personal information and planning for financial and legal hurdles set a solid foundation for both you and your loved one while helping to minimize disruptions.

Nevertheless, even with extensive planning and preparation, frustration is common. Frustration grows with the lack of cooperation from the loved one, the family and friends; from the medical community; and from putting in a lot of effort with very limited returns. Frustration leads to resentment – of the loved one, of family, friends and professionals who do not help enough, and others who have free time and seem relatively unburdened. Frustration and resentment are the foundation of anger.

Walt was a successful pharmaceutical representative who had depended on his very capable wife Mary to take care of the household. When Mary’s dementia prevented her from doing this, Walt was unprepared to take over "women’s work". He resented doing the chores and found that there were times he barely restrained his temper. "God he hated trying to get her dressed." Logically he knew Mary was not being difficult on purpose, but emotionally he feared he would lose control.

Anger is one of the strongest emotions that you may have to grapple with. Left untended, anger finds its way into most caregivers. It builds, it flares up, it lets itself out at the wrong time on undeserving others, on your stomach, on your driving and on your outlook, among other areas. In it’s worst manifestation it can lead to self-abuse or elder abuse. You can reduce your level of anger by learning to gauge your own level of well-being and taking care of yourself:

• Find time for your interests;
• Get respite care into your home;
• Develop healthy releases such as exercise;
• Vent your emotions at support group meetings and
• Manage your time effectively.

Understanding Guilt and Depression

Caregiving is a set-up for guilt. It is typically associated with how we think, feel or act toward someone or something we have done. Guilt is powerful, immobilizing and self-effacing. If we get angry with our loved one who is impaired with Alzheimer’s Disease, if we dislike providing care to them, if we wish they would die – the result is serious and significant guilt.

Depression is probably the most noted and debilitating of the emotions that you may face. The incidence of depression in caregivers has been reported to be three times that in a similar population. Isolation, loss, fatigue, and frustration make the caregiver vulnerable to depression. Clinical depression can be debilitating and require professional intervention.

If you have experienced five or more of the following symptoms for a period of two weeks, you may be diagnosed with clinical depression:

• Depressed mood;
• Diminished interest in activities;
• Change in appetite;
• Change in sleep pattern;
• Fatigue;
• Either agitation or slowing down;
• Feelings of worthlessness;
• Diminished concentration; and/or
• Recurrent thoughts of death.

Depression makes the caregiver vulnerable to a variety of unhealthy ways of coping. These may include:

• Excessive use of drugs, alcohol, and caffeine;
• Withdrawal from others and activities; and/or
• Self-destructive behavior.

While caregivers find themselves confronted with several emotions that they find unacceptable, it is depression that puts them at risk. If you have these symptoms of depression or are having trouble coping with your role as a caregiver, consult with your doctor, a support group or a qualified medical professional at once.

While the focus here has been on negative emotions there are good feelings too – the satisfaction of taking care of someone important to you, the feeling of being helpful and giving, and the knowledge that you are doing something extraordinarily special. It is important to identify both the good and bad feelings, and to accept and understand your feelings so you can better cope with them.

Continued in Part Two:
Overcoming Negative Emotions

Internet Resources:
- The Anger Wall on ALZwell
- ElderCare Online’s Community Center (Caregiving Mentors and Discussion Groups)
- National Adult Day Services Association

Related Articles:
- Overcoming Negative Emotions
- Where Is the Joy in Alzheimer’s Caregiving?
- Stress Management: Tips and Techniques
- Using Family Meetings to Resolve Eldercare Issues