When someone becomes seriously ill, families tend to pull together to support the patient through home care, coordination of outside care providers and management of insurance forms, payments and appointments with doctors and specialists. As time goes on, though, one family member typically emerges as the primary caregiver.
It could be anyone, but more often than not, it’s a woman. “One very, very telling study shows that only those people who have three or more daughters or daughters-in-law have a better than 50 percent chance of not finishing their life in a nursing home or an institution,” Dr. Leon Kass, a bioethicist and chairman of the President’s Council on Bioethics from 2002 to 2005, said in a 2006 PBS Frontline interview. “For all of our talk about gender equity, it’s still the daughters and daughters-in-law who give care. And it’s a hard job for one daughter or one daughter-in-law, especially if there are small children to be cared for.”
If you’re a primary caregiver, you know the adjustment it requires. You need to become proficient in nursing care and develop a routine focused on the patient’s schedule that dictates significant changes to your own lifestyle. Friendships may weaken because you’re too busy to participate in activities outside the home. In addition to the stress of your new duties and concern for what’s being put on hold, you may also be experiencing what’s known as anticipatory grief, or the process of grieving in advance of the actual death of a person with a terminal illness.
As a caregiver, you observe the gradual decline and loss of a family member. You see, daily and up close, someone once active grow infirm. Perhaps you had hoped that your children would have the opportunity to learn from the person or at least interact at birthdays, weddings and other major events. That hoped-for future is gone and that’s part of the loss you grieve, although, unlike other relatives, you can’t turn away.
Primary caregivers often resent that position. They feel they’ve given up everything to care for a family member while siblings or other relatives have gone on with their lives relatively unfazed. It’s not unusual for caregivers to direct that anger toward their families or even the patient.
Patients may also lash out at caregivers because of their own pain, anguish or confusion, causing a severe rift — one other family members can’t relate to. As the patient’s needs increase, it’s only natural for a caregiver to have thoughts of what it will be like when the family member is no longer here and she can begin to get her life back. It’s not necessarily a wish that the patient would die, it’s a hope that the responsibilities could end.
Mixed Feelings When It’s Over
When the patient you’ve cared for dies, you’ll need time to adjust to life not only without that person, but without the duties and forced routines of caregiving. Everything is gone. You’re no longer seeing the nurses and visiting professionals who may have become a significant, if temporary, part of your social circle. And you might have uncertainty about restoring long-untended relationships with your own friends.
There could be a change in your home environment as well, especially if you lived with the patient. Bulky medical equipment, like a hospital bed, may be removed. But as much as you anticipated that being a relief, you might find it takes time to get used to the change. Adjustments large and small, on top of mourning for the patient’s loss, add to the grief that family caregivers feel. These are all aspects of normal bereavement, though, and it’s important to allow yourself to feel them and to give yourself time to regain your footing.
Challenging Situations and Unwelcome Feelings
Caregivers are likely to have feelings other relatives will not experience after a family member’s death. Your natural relief that the patient is no longer suffering, and that your duties are complete, can lead to feelings of potentially overwhelming guilt. Other family members sometimes criticize a caregiver, making her feel that she did something to hasten the death of the terminally ill patient, as illogical as that idea may be. My colleagues and I have seen caregivers ostracized by their families after a death. In such cases, counseling can help a former caregiver cope with the anger and sadness that has been added to her grief.
Other circumstances can influence the way one grieves. In some cases, a caregiver may not have been especially close to the parent, sibling or grandparent they cared for, or at least may not have had the relationship they desired. This can lead to feelings of ambivalence and resentment toward the patient that persist after his or her loss.
Sometimes the family member a caregiver looked after was not a “loved one” at all. Psychotherapist and trauma specialist Carie Brinton has seen several cases in which a primary caregiver was the adult child of an abusive parent. The caregiver, Brinton says, might “fantasize” that the circumstances would change her parent and make him or her appreciate what the adult child has done to help. However, this does not always happen. A daughter might talk herself into taking on the role by telling herself that past abuse “wasn’t so bad,” only to discover that the abuse continues or gets worse as the patient declines. The perceived failure to restore that relationship, or the anger that the patient never did change, only adds to the caregiver’s grief.
Denial is another challenge faced by grieving caregivers, especially those who tended to a spouse and did not receive much additional support from children, relatives or friends. The surviving husband or wife often has more difficulty accepting the death, feeling that his or her only close confidante is gone.
Whether a spouse, child or sibling, “people really need to be prepared for the eventual loss and have a support system in place,” Brinton says. “Preparing is the key to a normal grief outcome. Plan ahead so that you aren’t sitting at home after the loss, feeling alone, depressed and empty.”
An unprepared caregiver, Brinton says, is more likely to grieve in unhealthy ways, which may include alcohol or substance abuse. Even if the caregiving situation was loving and healthy, feelings of guilt and relief can taint the grieving process.
When you lose the family member you cared for, there can be so many complex, unexpected layers to the grieving process that it may behoove you to seek out support groups or individual therapy. Thankfully, many medical centers, hospice groups and other organizations offer valuable resources for caregivers, as well as online support. (Learn more from the Family Caregiver Alliance and the Hospice Foundation of America.)
Kristine Kevorkian, Ph.D., M.S.W., has worked as a deputy coroner and a hospice medical social worker. She lectures and teaches frequently on aging, end-of-life care, death, bereavement and grief.
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