The Three Stages of Caregiving
Most of us have goals and dreams for our career and family life as we move into adulthood.
Yet when we look into the future, few of us ever imagine a world that includes caring for an elderly parent or relative, or a child with a chronic illness.
My own experience caring for a mother with Alzheimer’s disease (and as a facilitator of caregiver support groups) has taught me this lesson: you are usually thrown into the caregiver support role at a time when you don’t expect it, and when you are already busy enough with work and tending to the needs of your spouse and family.
Here is some insight to help you understand the different caregiving stages, and tips and resources you might find useful as you adapt to your new or evolving role.
1. The Early Stage: Surprise, Fear, Denial, Confusion, Sadness (What is happening to my loved one?)
You step into the role of caring for a relative with significant health needs because of a crisis; such as a fall, heart attack, stroke or accident, or because of escalating memory or behavioral problems. Your loved one’s family, which has been molded by routines and roles that have been solidified with time, might be in a state of disorganization, even chaos. The “normal” ways the family has taken care of itself can no longer continue, and new roles will emerge.
First, the siblings and spouse of the loved one begin to sort through who is available to provide care. This phase can go smoothly if all are in agreement about who is going to take on more responsibility, but it may involve conflict. Long-standing family tensions may surface. Still, it’s crucial that family members ask themselves: What does our loved one need? You shouldn’t underestimate the challenge.
Lisa Lavelle, LCSW, a teacher and therapist at the Ackerman Institute for the Family in New York City, often says, “The process by which a family becomes educated about a new illness is much like that of a foreigner trying to learn a new language.”
This step of becoming educated, and getting an accurate diagnostic work-up, is essential. Tests to determine the diagnosis can be quick or, in the case of dementia, can actually take several weeks, if not months. During this time, it’s normal to hear a spouse and siblings offering different views of the illness and ways of handling it. Generally, those closest to the relative, or those spending the most time with the person, tend to assess the severity of the illness faster that those who are less involved or living farther away.
Families mobilize help faster and reorganize more easily when they can confront their denial about the seriousness of the illness. A family that gets stuck at this point, however, should seek outside guidance form experts and organizations. Disease-specific organizations often provide useful information and emotional support. My sisters and I found the social workers at hospitals can also help. However, if those resources are not enough to get the family on track, I suggest enlisting help from a geriatric care manager or a family therapist. The best outcome occurs when everyone chips in, researching literature, organizations, and Websites that could be helpful, and sharing this information with each other.
Because we experience emotional pain and loss, confronting denial about a relative’s illness or health is sometimes the hardest step. I have heard well-meaning people say to caregivers, “Even though your mother can no longer cook and clean, don’t tell her she needs to hire a housekeeper, because you’ll make her feel old.” Certainly, for the children, it’s an adjustment seeing a parent who was a strong protector now vulnerable and needing help. The emotional pain is compounded when that parent was the glue that kept the family together. While good caregivers do get beyond the denial phase and don’t let emotions overwhelm them, even the best will feel some resentment about the increased responsibility. I always suggest that caregivers talk to relatives, friends and counselors to help cope with fear, sadness and other feelings.
Your loved one is also dealing with denial and loss. I remember my mother telling my sisters and me that we should not discuss her memory problem with anyone. If she had acknowledged the issue, it would have meant having her suddenly change the way she saw herself –at a time when she very much wanted to be perceived as the competent, strong artist that she was.
Remember to obtain the help you need! Some important resources include doctors, nurses, social workers, the Department of Aging in your state, company Work/Life benefits, Employee Assistance Programs, geriatric care managers, and eldercare attorneys.
2. The Middle Stage: Frustration, Guilt, Resentment, Conflicting Demands (How long does this last?)
By now your family has confronted the initial denial and negotiated relationships so it is clearer to each member who is providing most of the caretaking tasks and how the tasks are divided up. The discussions about whether the relative needs help have given way to paying more attention to the increasing demands. However, if you are the primary caregiver and do not have the support of other family members, tension and conflict will continue. Usually, through, your loved one has become more accepting of help, and new family routines will have evolved.
Still, caregivers have to continue to assess their loved one’s needs and find appropriate resources as the needs change. It’s important that each doctor treating the patient is aware of every medication that has been prescribed. As the caregiver, you’ll also need to make sure that the medication is actually taken. In cases of cognitive decline, you might need to help your relative to fill out insurance forms and keep track of paperwork. The home may need new equipment or alteration to better accommodate changing needs. Also, you might have to consider alternative living arrangements.
At this point you may be giving up time you spend with friends and family, and on hobbies, recreation, and other activities. Unfortunately your own emotional needs might go unrecognized by medical personnel –who not only are more focused on the patient, but less available to assess the family’s ability to provide continued care.
Often caregivers tell me they have to step off the fast track at work in order to keep up with the multiple roles. Some who don’t have enough resources or family support even quit their jobs, but the guilt-driven caregiver who sacrifices too much is risking depression. I recommend maintaining your job, activities, exercise, and relationships to offset the stresses of caregiving. If you are really stretched for time, however, instead of cutting out any one activity, you might want to scale back the frequency.
Some important resources include home healthcare services, senior citizen centers, day treatment programs, assisted living facilities, Meals On Wheels, geriatric care managers, and support groups.
3. The Late Stage: Sadness, Guilt, Surrender, Regrets, Relief, Solace, Closure (How do I respect the needs of my loved one?)
By now, as your loved one is in decline, you will have solidified your role of advocate. This can be especially significant as you deal with hospitals, nursing homes, and institutions whose staffs can at times convey an overpowering attitude. I continue to be impressed, for example, by the steadfastness of caregivers who remain bedside during hospitalizations, helping overworked doctors and nurses pay closer attention to the patient’s needs.
Questions of quality of life versus longevity also will need to be broached by sensitively finding out a person’s wishes. If the family has planned ahead, legal documents might already be in place to support these difficult decisions. Hospice care is valuable in assisting the loved one and the family in providing a loving environment for the last moments of life.
When caregivers tell their story, they often focus on what they did not do or what went wrong, instead of the many hours of care they provided and the amazing challenges they took on. Guilt can give us an illusion of control at a time when we face our ultimate feeling of powerlessness over the inability to keep a loved one alive.
Some important resources include hospitals, doctors, nurses, social workers, hospice, nursing homes, pastor or rabbi, and counselors.
Carolyn McIntyre, LCSW-R, CEAP, is a Licensed Clinical Social Worker and Certified Employee Assistance Professional with over 18 years of experience providing counseling, training and support groups. She is on the advisory board for Caring Today and a consultant for APS Healthcare.
Caring Today magazine offers practical advice for the family caregiver. To subscribe to Caring Today, click here.
This article was originally published in the Spring, 2005 issue of Caring Today magazine, page 32. Reprinted with permission from Caring Today magazine.
You may print out a copy of this article for your personal, non-commercial use; any other use shall require the prior written approval of Caring Today magazine. Request may be sent by using contact information found on the Caring Today Website.