In this module, learn more about what causes grief and the effects of change and loss. Learn the stages of grief and how to manage change, loss, and grief.
- Change >> Loss >> Grief
- Anticipatory Grief
- The Grieving Process
- Explanations of Grief (including The 5 Stages of Grief/Loss)
- Myths and Facts about Grief
- Loss due to terminal illness
- Your Loss and Grief
- When Your Loved One dies
- How to Cope with Grief, Loss, and Change
- Resources for Caregivers
Dictionaries define grief as,
- “Deep sadness caused especially by someone’s death”
- “a cause of deep sadness.”
- “trouble or annoyance.”
- “The anguish experienced after significant loss, usually the death of a beloved person…Grief may also take the form of regret for something lost, remorse for something done, or sorrow for a mishap to oneself…”
Everyone has to deal with loss, change, and grief in their lives. With change comes loss, and loss causes some level of grief.
Whether negative or positive, change means something in life has changed, whether short-term or forever. Life will never be quite the same. Caregivers experience loss just by the demands of caregiving and the impact they have on their lives. Caregivers may be in a continuing cycle of some stage of grief.
Losses may start with the loved one’s decline in health and abilities, or the diagnosis of a major illness, such as cancer or Alzheimer’s disease. Losses mean more help the caregiver has to provide (or find) to keep the loved one as healthy and independent as possible.
One of the biggest changes may be the relationship you have with your loved one when they are diagnosed with a short term or long-term illness, dementia and Alzheimer’s, and other chronic illnesses.
Caregivers can experience a loss of identity, the former relationship with a loved one, lifestyle, financial stability, maybe loss of their own or a family home, and many small and large losses.
For example, your mom has surgery. Her life changes as she cannot do things she routinely did before her surgery. Depending on the surgery, she may or may not ever be able to do what she loves again, or at least not as easily. And for you, her surgery means you have to change routine you had, even if it is only for a few weeks. Depending on your mom’s recovery, her change may be long term or even permanent.
As the caregiver, you may experience complex feelings caused by temporary or permanent loss, such as
- Guilt (the most common emotion of caregivers)
- Feeling overwhelmed
- Feeling helpless
- Not wanting to eat OR stress eating (snacks and overeating at meals).
We may not realize that we are in the grieving process. The diagnosis of a terminal illness adds to the grief process with the large number of losses the care receiver and the caregiver have already been experiencing as the person’s health declines. The diagnosis of a terminal illness brings an overwhelming sense of loss for the person diagnosed as well as for the caregiver.
When we think of grief, we generally think of the process and feelings we experience after someone dies. In reality, we begin grieving on the day someone we love is diagnosed with a life-threatening illness. This process of mourning before someone we love has died is called, Anticipatory Grief. According to noted grief expert, Dr. Therese Rando, anticipatory grief refers to the process in which we begin to mourn past, present, and future losses. You are grieving the loss of someone’s illness, not death, although the emotions can be just as intense.
There is no right or wrong way to grieve. How you grieve depends on many factors, including your personality and coping style, your life experience, your faith, the relationship with the one you lost, and how significant the loss is to you.
Inevitably, the grieving process takes time. Healing happens gradually; it can’t be forced or hurried—and there is no “normal” timetable for grieving. Some people start to feel better in weeks or months. For others, the grieving process is measured in years. Whatever your grief experience, it’s important to be patient with yourself and allow the process to naturally unfold. Perhaps the phrase “moving on” is not the right one for you. Many people say that they have learned to live with the loss.
Stage 1 Denial – Denial is the stage that can initially help you survive the loss. You might think life makes no sense, has no meaning, and is too overwhelming. You start to deny the news and, in effect, go numb.
Stage 2 Anger – Once you start to live in ‘actual’ reality again and not in ‘preferable’ reality, anger might start to set in. This is a common stage to think thoughts like “why me?” and “life’s not fair!” You might blame others for the cause of your grief or you may redirect your anger to close friends and family.
Stage 3 Bargaining – This often includes making a deal with God. “Please God, if you heal my husband, I will strive to be the best wife I can ever be and never complain again.” This stage is false hope, falsely making yourself believe you can avoid the grief through a type of negotiation. “If you change this, I’ll change that.” Guilt is a common emotion during this stage, often including thoughts of “what if.” For example, “What if we got a diagnosis earlier?” or “What if I had spent more time with dad?”
Stage 4 Depression – Depression includes the emptiness we feel when the person who died has passed. In this stage, you might withdraw from life, feel numb, live in a fog, and not want to get out of bed. The world might seem too much and too overwhelming to face. You don’t want to be around others, don’t feel like talking, and experience feelings of hopelessness. You might even experience suicidal thoughts – thinking “what’s the point of going on?” If so, call 911 and get help immediately. Also call the person you are closest to and ask that they be with you when you are experiencing this thinking.
Stage 5 Acceptance – Acceptance, the final stage, does not mean that “it’s okay my husband died” rather, “my husband died, but I’m going to be okay.” In this stage, emotions begin to stabilize. You re-enter reality. You come to terms with the fact that the “new” reality is that the person who died is never coming back. You may not feel that you are “moving on” but learning to live with it. It is a continuing time of adjustment and readjustment.
Since Kubler-Ross’ groundbreaking work, other theories of the grieving process have been proposed, including,
- Therese Rando’s “Six Rs”
- William Worden’s “Tasks of Mourning”
- Margaret Stroebe & Henk Strut’s “Dual Process”
Whichever model works for you, it is not easy and grief has many myths.
- Myth: The pain will go away faster if you ignore it
- Fact: Trying to ignore your pain or keep it from surfacing will only make it worse in the long run. For real healing, it is necessary to face your grief and actively deal with it.
- Myth: It’s important to “be strong” in the face of loss.
- Fact: Feeling sad, frightened, or lonely is a normal reaction to loss. Crying doesn’t mean you are weak. You don’t need to protect your family or friends by putting on a brave front. Showing your true feelings can help them and you.
- Myth: If you don’t cry, it means you aren’t sorry about the loss.
- Fact: Crying is a normal response to sadness, but it’s not the only one. Those who don’t cry may feel the pain just as deeply as others. They may simply have other ways of showing it.
- Myth: Grieving should last about a year.
- Fact: There is no specific time frame for grieving. How long it takes differs from person to person.
- Myth: Moving on with your life means forgetting about your loss.
- Fact: Moving on means you’ve accepted your loss—but that’s not the same as forgetting. You can move on with your life and keep the memory of someone or something you lost as an important part of you. In fact, as we move through life, these memories can become more and more integral to defining the people we are.
Watching the declining health of someone with terminal illness is a major loss. Family members, overwhelmed with their own feelings of loss and grief, can generate an atmosphere of gloom and depression for the person who is terminally ill. This makes the situation even worse, causing anger, apathy, and hopelessness within the family and for the terminally ill person. You, the caregiver, and the family may be the greatest resource for the terminally ill. Make the effort yourself and encourage family members and friends to support the person who is ill during this difficult time.
Emotions of the person who is ill can be complex and change often. No matter how upbeat they may appear to be, terminally ill people are experiencing many emotions, which will include fear, confusion, grief, and other emotions. The ill person may withdraw or fear being alone, depending on their personality or how physically painful the illness is.
How can the caregiver and family provide support?
Removing all sense of a normal life only adds to the loss someone is experiencing. Conducting life as normally as possible is essential to minimize the sense of loss and deepen the grief of someone facing death. It is important to,
1) accept that the person is going to die,
2) make plans to help passing as peaceful as possible and
3) provide needed care in as positive a way as possible.
How can the person stay as independent and engaged in their life?
What can he or she continue to do to keep life as normal as possible? For example, if she is accustomed to cooking her own food and doing her own chores, encourage her to continue as long as she is able to do so. Watch for signs of fatigue and the loss of mobility, making her activity unsafe, and then help. Keep reminding yourself that you can reduce the loss your loved one is experiencing if she can lead as normal a life as possible.
Suggest the person rest, instead of telling her she “should” rest. Unless she asks you to take over things she is accustomed to doing, resist the urge to step in until she asks for help. Instead, say something like, “I’m concerned you are really tired; wouldn’t resting help right now?” Or “Can I help you with what you are doing so you can rest?”
Planning during declining illness before the death will make the aftermath of the death easier and allow better closure for you and the family.
The inevitable is going to happen.
Focus on making their last hours, days, or months as positive as possible. Try not to create an environment of excessive seriousness or unnatural optimism, but find something positive to acknowledge every day.
Your loss and grief is uniquely your own. Try to not compare your grief to those of other family members, friends or anyone else. There is no “getting over” the death of a parent, spouse, other family member, or a close friend. You learn to live with your life without them in it.
Your loss and a certain amount of grief does not always start with the death of a loved one. It starts as the illness or sudden medical event (stroke, slip or fall, or a diagnosis) changes that person’s life and yours. The grieving process of adjusting to a long term or terminal illness may not be as intense as death, but you may recognize many of the stages of grief discussed earlier.
The death of a loved one triggers often complex grieving, depending on how long you have been the caregiver and the nature of the relationship to that person. Many other losses are also involved when a loved one dies, depending on the roles they played in the family. These losses may receive little recognition but can be very frightening to the survivor since they represent new challenges to be faced and new skills to be learned. Losses such as sale of the family home, decisions about possessions of the loved one, change to your lifestyle, and many other changes are among the losses a caregiver may face.
Don’t feel you have to shelter other family members from your pain and tears and pain. Even adult children learn by observing and one way to teach them and others that it is all right to grieve is to cry and grieve in front of them.
It may be easier said than done, its important to take care of and be good to yourself. Allow yourself to express your feelings.
Everyone experiences loss and death differently. Everyone deals with death differently. Often the death brings up old grief for family and friends the person has already lost to death.
Use the tools outlined in How to Cope, recognizing that the tools depend on the relationship with the family who have died.
Mourning rituals include the funeral or memorial service and often the gathering of family and friends for a meal. Following the immediate death, however, the surviving spouse, daughter, son, or other caregiver often feels isolated and alone. Overwhelming fear, forgetfulness, indecisiveness, anger, and guilt are all normal reactions to loss of a loved one. Grief takes time with self-compassion and understanding.
Loss of Parent(s)
Every year, almost 12 million adults lose a parent. It is the single most common cause of bereavement in the United States. You may find yourself thinking,
- It’s been six months since Dad died.
- When will Mom stop crying?
- Dad was so decisive before. Now he can hardly make a decision.
- Mom thinks she’s destitute even though she’s financially all right.
Adult children who lose a parent may find that their co-workers are too nervous about intruding to even acknowledge their loss.
One of the most difficult issues for a caregiver is understanding a parent’s grief, especially when the caregiver herself is grieving.
Loss of Spouse
The death of a spouse is one of life’s most stressful events. While there is no timeline to grieving, most believe it takes two to four years to adjust one’s life to the death of a spouse.
The surviving spouse finds herself or himself alone just when she/he is most in need of comfort.
Loss of Sibling(s)
Each family member has his/her own special history and the shared bonds that become a part of that history. When a sibling dies, the bonds are shattered and the history has a void that cannot be filled. There will be memories of growing up in the family that can no longer be shared.
New family roles may emerge. A surviving sibling may have to replace a brother or sister as the caregiver for elderly parents. Another family member may be named as the guardian for surviving nieces or nephews. Fulfilling these new roles can also cause adult siblings to put off dealing with their own pain and loss. Another aspect of the void may find the survivor feeling abandoned by the sibling whose role has always been that of the dependable ally in times of crisis.
There will be times when adult siblings have not remained close. Such a bereaved sibling may feel remorse or even guilt, because they have grown estranged. Siblings may be ambivalent about their relationships in life, but in death, the power of their bond becomes clear. These are understandable feelings that will be part of the grieving process.
If the surviving sibling is married and the spouse has not experienced this loss, it may introduce stress into the relationship. The spouse may be bewildered and even unsympathetic that this loss is causing so much sorrow in their own family. Spouses may need to be told how they can be supportive.
Loss of Children
As Barbara Rosof says in her book, The Worst Loss: How Families Heal from the Death of a Child, “Today’s families are smaller; many children have only one sibling. For such children to lose their sibling makes them an only child, a sole survivor. The child they grew up with, who lived through their childhood with them, their witness, is gone.”
Remember that it takes time to grieve. Don’t be discouraged if you think you are feeling better and then find yourself grieving almost as much as you did in the beginning. Most people experience these setbacks. Time will help but you may always experience some degree of grief. Many people report that they can think about someone who has died and feel as much pain as they did then even decades later. Keep living your life and moving forward to get past the painful experience.
Since everyone copes with loss differently, below are some tips to help support you through grief.
- Talk about the loss with someone who is close to you. This may be a family member, a friend, or someone from your religious faith.
- Spend time with family, friends, people from church, and others.
- Some people need to stay more active than others. Some people may want to walk, work on a hobby, or garden.
- Write thoughts and feelings down, especially if you don’t think you can talk to someone. Typing onto a computer is fast and may keep up with your thinking, although some people prefer handwriting.
- Many print and audio books are available on self-help, grief and loss.
- “Escape” reading: novels, biographies, or magazines.
Learn more in the education module titled Emotions and Behaviours of Aging
- Call 2-1-1 throughout Texas for information and access to health and human service information for all ages.
- Call 800-252-9240 to find local Texas Area Agency on Aging.
- Call 800-677-1116 – Elder Care Locator service to find help throughout the U.S.
Use resources such as Area Agency on Aging (AAA). Types of assistance provided by AAAs:
- Information and referral
- Caregiver education and training
- Caregiver respite
- Caregiver support coordination
- Case management
- Transportation assistance
Assistance available through AAAs for persons age 60 and older may include:
- Benefits counseling
- Ombudsman – advocacy for those who live in nursing homes and assisted living facilities
- Home-delivered meals
- Congregate meals
- Light housekeeping
Be sure to check out our Resource Directory, FAQ, and Educational Events Calendar for more great information! Permission is granted to duplicate any and all parts of this page to use in education programs supporting family members caring for elders.
Revised March 2022Print This Page
We hope this information is helpful to you in the important work you do as a family caregiver.
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