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Using the FOCUS model to work with caretakers of adult children

By Susanne Beier and Merri Drake April 7, 2014

Recently, a colleague shared the news that her adult daughter had been diagnosed with cancer. Her first reaction? “This cannot be true! There must be some mistake! How can this be?” — especially when her daughter had live such a healthy lifestyle.

From her first reaction of total disbelief, the mother moved on to trying to place blame. Had she, as her mother, failed to provide proper nutritional support when she was pregnant with her daughter? Did she drink too much coffee? Were the children exposed to household chemicals or pest control as she raised them?

HeartinHandsHer head was spinning. She could not make sense of this unexpected situation. She did know, however, that she would be there for her daughter. She would be by her side to see her through this trauma. She would relieve her daughter of any extra responsibilities, allowing her daughter to focus solely on getting well. She would do anything to help her daughter.

At the same time, she questioned whether she could endure watching her daughter go through the treatments. After all, moms are always the “fixer.” But in this instance, she did not know how to “fix it.” Whom could she talk to? Could a counselor help?

 

The role of the counselor

Counselors need to be versed in maternal coping skills and how these skills apply to different crises — in this case, the cancer diagnosis of an adult child. The caregiving mother, in this new and unfamiliar role, may dedicate herself to maintaining a cheerful disposition. However, the way the caregiving mother appears to be coping may be quite different from what the caregiver is actually feeling. Additionally, other factors come into play when serious illness strikes the family. The dynamics of the family are turned upside down, even if only on a temporary basis, as the family deals with the present crisis.

Major cancer centers throughout the United States offer counseling services for cancer patients, spouses and children of parents with cancer. Some may even offer assistance for caregivers. But when the caregiver is the mother of an adult child with cancer, assistance to address the needs of this dynamic appears to be lacking. As a result, without any guidance, there can be extra tension between mother and daughter, lack of attention to the mother/caregiver’s own health problems, stress in the marriage of the mother/caregiver, feelings that life is closing in on the mother/caregiver and grandchildren who may feel a great deal of uncertainty. The children are used to mom being there. Now their world is being driven by grandma, even though mom is still there too. It is difficult for them to understand why they now need to listen to grandma. Grandma had never been a disciplinarian before, and it is a role the grandchildren resent.

Generational gaps can lead to misunderstandings that then lead to declining grades in school, lashing out in emotional or verbal confrontations, and even depression for the children. Now grandmother is worried even more, not just about her daughter, but about the entire family. And, of course, grandma wants to help her son-in-law too as he tries to manage his wife’s illness. Soon, this can spiral out of control and hearts are shattered, emotions are frayed and everyone in the house can feel lost and in the dark. Can this emotion and physical mess be prevented or at least reversed? How can a counselor assist?

One intervention model counselors can use to assist mothers/caregivers of an adult child is FOCUS. The FOCUS model, developed by the authors of this article, came about as a result of working with caretakers of adult children. The program provides hands-on intervention techniques for the parent/caregiver of an adult child diagnosed with a life-threatening disease and addresses the caregiver’s personal needs and interaction with the whole family unit.

 

F – Family dynamics

Mental health professionals will help the caregiver mother of an adult child first and foremost by identifying the dynamics of the relationship between mother and daughter prior to the illness. Was it close and intimate — sharing jokes, sharing funny stories, sharing recipes, planning vacations together? Or was it emotionally distant, sometimes resulting in arguments or disagreements?

If so, the act of providing assistance for the adult daughter and her family is not going to change those dynamics. The counselor needs to help the caregiver mom address the realities of the mother/daughter relationship prior to the illness. The same tensions that were present prior to this event will surface again. If any prior tension surfaces during cancer treatment, guilt will have fertile ground, adding to the already tense environment. A counselor can help identify those areas that have historically caused tension and help the caregiving mother develop techniques to prevent those eruptions from happening again during this very difficult time.

The relationship between mother and adult child with cancer has a history, it will have a present, and it will have a future. A counselor can help the caregiving mother identify each of those stages, past/present/future, and help her create expectations that are realistic. The counselor can help the caregiver mom become aware of the past and what could have gone wrong, how to manage the present and how to create a foundation for healing the relationship for the future.

 

O – Only do

Only do what the son/daughter can NOT do, or when they can NOT do it. It is important to help the caregiver mom recognize and accept that she needs to let the adult daughter and her husband complete any tasks which they feel they need to do. It is important to recognize that the patient and her family need normalcy too. In other words, the counselor needs to encourage the caregiver mom to ask “what is the norm around here?” rather than assuming that what she thinks is “normal” is in fact so.

For example, do the children need dinner each night before soccer practice and piano lessons and dance lessons? The caregiving mother (and grandmother) should not assume that she is going to modify the routine, cook a new healthy meal that they will eat and love, and that the children will dance out of the house gratified that grandma is in control. In fact, the children need their normal routine; they may resent that their mom is not able to do what she normally does. Ask their mother what the kids enjoy eating. Cook only that. Keep the routine they are accustomed to. Only do what the children need to continue doing. The caregiver mom is not there to “fix” family dysfunction. If she feels the kids are overscheduled and overinvolved, it is not her job to change that. She should just get them where they need to be, when they need to be there and let them know she is happy to be there for them.

 

C – Create a list of resources

Assist the caregiver mom to create an order of what resources she may need or not need to be effective in assisting the family. In being the temporary “mom,” she may want to do it all by herself because that is what she did when her own children were small.  The counselor can help the caregiver mom to recognize that she may need help with scheduling, grocery shopping, driving the kids to all of their events, helping with homework, cleaning house, etc. — and that it is not a weakness to call in help for some of these necessities.

The client can be guided to contact a church, contact neighbors, contact her daughter’s friends … Help is out there, so help her to see it, ask for it and take it! Create a list of phone numbers that includes doctors, babysitters, neighbors, the fire department, the gas company, landscapers, the phone company, the electric company, the insurance company (for both car and house) and someone from each of the children’s activities (such as another mom) whom she can contact if she has a problem. Unexpected contacts such as emergency numbers prevent a scramble to find help when it is urgently needed.

 

U – Unwind

The counselor needs to help the caregiver mom accept that she needs to “unwind” so she does not become emotionally or physically unglued herself. Help her choose the best and easiest way for her to unwind. She may need to understand the benefits of going for a walk, reading a book, knitting or sewing something, going to a movie, etc. Help her find her own method of unwinding. It could be a as simple as writing in a journal and going on short walks, as active as swimming in the pool and going to a local gym, or just relaxing in a lounge chair.

 

S – Support group

Help the caregiver mom identify support for time alone without the family. Help her see the importance of reaching out to her own friends to deal with the fear she is feeling and help her to laugh even through the darkest days. Did she have friends prior to focusing her attention on the adult child with cancer? If so, coach her to spend time with those same friends by scheduling dinner or a movie, laughing and then laughing some more. If she has moved in with her adult child and the family in another geographic area, help her to take advantage of technology such as Skype or Facebook so she can see old friends face to face and catch up on what’s happening in her life and theirs. If she has not stayed connected with friends, or did not have close friends to begin with, recommend that she go to a local church and connect with a women’s group or attend a theater and ask a neighbor to go with her. In other words, help her to recognize the importance of maintaining social connections.

 

Conclusion

A counselor who works with a caregiver mom of an adult child with cancer must also be prepared to address the fact that the client’s life will be in constant flux from now on. Why? Even if remission occurs, the cancer may return, possibly requiring the caregiver mom to again restructure or temporarily leave her job to take care of her adult child. In the case discussed in this article, the parent had the fortune of having a job where she was able to telecommute and work from anywhere. Thus, if required, she could again move near her daughter to take care of her and the family. This is obviously not the case in all instances. Therefore, the counselor needs to prepare the caregiver mom for that reality.

Additionally, the counselor needs to help the client address the reality that upon returning back to her own home and life, she may experience continued feelings of helplessness, general fear and remnant feelings of guilt (for instance, “Maybe I should have stayed with my daughter longer”). As part of the treatment, it is also recommended the counselor encourage the client to take up yoga or other self-reflective types of exercises.

The primary goal is to help the client feel centered and better able to embrace crisis within the family, and personally, since the cancer diagnosis. Finally, it is recommended that the counselor be very familiar with resources, support groups and the importance of a social life outside of the crisis situation. With the counselor’s help, the caregiver mom of an adult child diagnosed with cancer or another life-threatening illness can develop new strategies to maintain her own emotional and physical well-being for the current situation and for the future.

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Susanne Beier is a licensed professional counselor (Pennsylvania and New Jersey), a nationally certified counselor and nationally certified career counselor, and a diplomate in clinical forensic counseling. Contact her at bsusanne847@gmail.com.

 

Merri Drake teaches psychology courses at the University of Phoenix. She has 20 years of experience working with children and adults within communities in crisis situations, and connecting families with resources and techniques to develop personal growth from crisis. Contact her at journeyconsult@hotmail.com.

 

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