The Emotional Impact of Caregiving Grief, Depression, and Caregiver Burnout The emotional impact of caregiving is even harder for people than the physical impact of caregiving. The emotional stresses seem endless and run the gamut from resentment, anger, guilt, grief, shame, anxiety to feelings of loss and isolation. When caregiving goes on for long periods of time, or when it is unexpected, such as with a sudden stroke or heart attack… or is off-time -caring for a 50 year old spouse who has Alzheimer’s… the emotional stresses increase.

Credits This presentation adapted for XXXXX county and presented by: Xxxxxxxx Xxxxxxxx County Cooperative Extension Office Xxxxxxxx phone number/address/email This presentation prepared by: Carolyn S. Wilken, Ph.D., M.P.H. Associate Professor, FYCS Extension Specialist, Gerontology University of Florida cswilken@ifas.ufl.edu

Emotional Stress of Caregiving While slightly more than a quarter of caregivers report feeling no emotional stress, 75% express some feelings of emotional stress…30 % reported feeling somewhat stressed, 17% reported feeling that caregiving was stressful and nearly 20% regarding their caregiving as very stressful. Certain factors related to the caregiver, the care receiver and the caregiving situation contribute to stronger feelings of emotional stress.

Stressed caregivers are… Women Traveling caregivers Co-residing Older Sicker Dementia caring Caregiving is particularly stressful for women as 40% of female caregivers are emotionally stressed compared to only a quarter of men. While living with the care receiver is related to emotional stress, living more than an hour from the care receiver is also stressful. Older caregivers seem to be more emotionally stressed, as do those in poor health. Younger caregivers express less emotional stress, provide less intense care, live apart from the care-receiver and are in better health. Providing care for someone with dementia, or confusion was more stressful than caring for someone who is cognitively intact. Feeling that they had no choice in taking on caregiving responsibilities was the greatest predictor of stress in caregiving.

No Choice in Caregiving Half felt no choice Women less choice than men No choice highest stress More burdened Higher levels of care Poor health The strongest predictor of emotional stress for caregivers was feeling as if they had no choice in assuming the caregiving role. Nearly half of the sample felt they had no choice. Women felt they had less choice than men. Those who felt like they had no choice in caregiving provided higher levels of care, felt more burdened by caregiving and were in poorer health.

Emotions of Caregiving Helplessness Resentment Guilt Grief Depression The stresses of caregiving show up in a variety of emotions. Listen as these caregivers describe their feelings… “I have this sense of helplessness that I’ve never experienced in my life. I was a career military officer and all my life I’ve been in charge of things. I could get things to happen, I could make things better and solve problems. Now it feels that there is nothing I can do to stop her decline… I’m losing her and I can’t stop it” “This is not the way our life was supposed to work out. We had great plans for when we retired. I’ve spent my life taking care of my family cooking, doing laundry, housework, and taking care of people. Since he had the stroke we’ve gone from planning trips to Europe to struggling to get to the bathroom. I’m constantly dealing with health care providers and insurance issues. Juggling caregiving responsibilities has left me exhausted with no time or energy for my grandchildren. I end up feeling resentful at the hand I’ve been dealt. I love my husband, and I know this isn’t his fault, but it just isn’t fair…” “Sometimes I just wish it would all be over. I know that sound terrible and I feel so guilty when I have those thoughts… I feel guilty when I lose my patience and yell at my dad. I feel guilty when I forget to pick up his medicine, or pretend that I don’t hear him when he calls for me… No matter what I do, it seems like it’s not enough and that I should be doing better… I should have a better attitude and be more loving and compassionate. Mostly I just feel guilty…you name the bad feelings and thoughts and I’ve probably had them…” “I go to work, and every night I drag myself to the nursing home to take care of my mother and cry all the way home. I can’t stand to see her that way. She used to be so vibrant and alive, my sadness sometimes feels overwhelming. I just cry, can’t eat, and feel hopeless and irritable all the time. Mother and I have always been so close and I feel as if she has died… yet she is still here. Exhaustion Frustration Anger Sadness, Helplessness, Resentment, and Grief… individually and for the short term, these are all overwhelming emotions. When they pile up without relief, depression ensues. Caregiving itself does not cause depression, nor will everyone who is a caregiver develop depression. The overwhelming emotions and physical strain, can leave caregivers totally drained of energy, crying frequently or easily angered by their loved one or other people. When sadness and crying, or these negative feelings don’t go away or the negative feelings are unrelenting, the caregiver should be evaluated for depression.

Symptoms of Depression Tearfulness Irritability Tiredness Talk of inadequacy Lack of concentration Complains of sleep problems Changes in eating patterns Depression is so prevalent among older adults that it has been referred to as the “Common Cold of Aging”…so it is not surprising that when you add the stresses of caregiving, that depression would be so common among caregivers. Depression is more common among women than men in the general population and that is true among caregivers as well. Often caregivers become so overwhelmed with the daily work of caregiving that they don’t have the time or energy to even recognize, let alone seek treatment for depression. It is important to note that in addition to the normal symptoms of depression… tearfulness, irritability, tiredness, talk of inadequacy/suicide, lack of concentration and changes in eating and sleeping patterns, men who are depressed may exhibit differently with anger, alcohol, powerlessness or overwork. The deep sadness seen in many caregivers, and often related to depression is actually grief.

Grief and Caregiving Grief is Loss Loss of other Loss of self Loss of former life Loss of expected future Professionals who work in the area of grief describe ‘grief as the pain, and mourning as the process for working through grief’. Caregivers experience the pain of grief is physically, emotionally and socially… yet because of the nature of caregiving have no socially designated process for mourning…leaving a long lasting pain. The grief of caregiving arises from loss… when a relationship becomes a caregiving relationship the roles change in important ways. Whether a wife becomes the caregiver for her husband or the husband becomes caregiver for the wife -or an adult child become a caregiver for a parent, the roles change. Losing the old relationship is an important loss. People often talk about how their role as a caregiver takes over their life and the person they once were… is gone…. Caregivers (and care receivers) also grieve for the life they used to have, and they grieve for the future that will never be. Continuing, unresolved grief can lead to depression, physical ailments and caregiver burnout.

Stages of Caregiver Burnout Stage One--Frustration Stage Two--Isolation Stage Three--Despair Burnout is a serious problem for caregivers, their families and care receivers. When the caregiver reaches the point that each day feels like more than he or she can bear. Frustration: The primary caregiver expresses continuing frustration and disappointment over the CR deteriorating condition or lack of recovery progress. Has difficulty accepting that the quality of the care and the effort has nothing to do with the actual health-related decline or the mood of the care receiver. Isolation Primary caregiver struggles to maintain sense of purpose in working hard to provide care. May express feelings of loneliness being unappreciated, second-guessed or criticized by other family members and the care-receiver. Reality of the care-receiver’s condition and limitations of caregiving are not accepted. The caregiver is reluctant, unable or unwilling to reach out for help from others. Despair The PC feels helpless and adrift. The primary caregiver is unable to concentrate and loses effectiveness as a caregiver. As a consequence, the primary caregiver neglects personal care and well-being and loses interest in the community, social contact and respite activities. Caregiver burnout may result in the loss of the caregiver… either the caregiver feels they can not continue or they become too ill (physically or emotionally) to continue… leaving the family to make critical decisions about the future. Most families do not have a line of people waiting their turn to be the next caregiver so the care receiver faces a high risk of institutionalization. In many situations, burnout can be prevented if caregivers develop effective coping strategies.

Coping Strategies Prayer Talking to family/friends Reading about caregiving Exercising Seek information on internet Talk to professional Taking medications Caregivers have identified behaviors that help them cope with the emotional stresses of caregiving, and reduce the risk of burnout. Among all coping strategies, prayer was identified by the majority of caregiver. No special training or equipment needed. While many caregivers across all subgroups use prayer to help with caregiving stress, African-American (84%) and Hispanic (79%) caregivers are more likely to copy by praying than white (71%) or Asian (50%) caregivers. Women reported talking to family and friends as a helpful coping strategy. Men more than women, use exercise as a coping strategy. For all caregivers, seeking information is important. Learning about the care receiver’s disease, or finding tips to help with caregiving issues reduces stress and burden. Recent research suggests that caregivers are using the Internet as a coping strategy. 88% seek information about condition 55% seek information about services 39% seek support from other caregivers -primarily through chat rooms Who uses the internet? Among caregivers who use the internet, they tend to be younger (<65), college educated, have higher incomes, are secondary caregivers, and provide care for someone with Alzheimer’s disease. Providing care is an emotionally stressful undertaking. Caregivers who experience high levels of emotional distress are at highest risk for depression, grief and ultimately caregiver burnout. It is important for caregivers to identify coping strategies that are most protective for them so they can continue to provide care while still taking care of themselves. It is critical for caregivers’ families and friends to be attuned to the feelings and stresses of caregivers and to be prepared to assist or to intervene when needed.