Most of us can equate our lives with driving down a highway. Normally, the weather is pretty good, we move along at a steady pace with everyone else, and the trip's a pleasant one. Occasionally, the skies are overcast or stormy, we may be forced to take a detour, or we hit a bump in the road. Not the greatest experience, but not all that bad.

But imagine driving merrily down the road and having a 10-ton elephant suddenly appear in your lane. What would you do? Slam on your brakes? Swerve to miss it? Close your eyes and hope for the best?

Many of your clients' families have an "elephant in their living room" that seems to have appeared out of nowhere: How will they cope with a loved one who needs long-term care?

Healthcare Professional Digest recently spoke with Susan Graham, director of social services for Interim HealthCare in Greenville, S.C., about coping with the stress long-term care can put on family members and what can be done to help them. Here's what she had to say.

Healthcare Professional Digest: Why do people need help coping with an ailing family member?

Susan Graham: They often find themselves dealing with a new, overwhelming situation. They may be in denial about what's going on. Finances may be tight. They still have to go to work or run errands for a few hours, but they feel guilty about leaving the sick family member at home alone. They experience stress without relief or breaks. They feel like they have no life of their own, and they have no idea where to turn.

HPD: If home healthcare professionals sense family members are feeling this way, what should they do?

Graham: Healthcare professionals shouldn't take on too much responsibility themselves. After all, their skills are in providing care. If they see family members getting stressed, they should call in a social worker.

HPD: What is the role of social workers in this kind of situation?

Graham: We're problem solvers. We do a comprehensive screening to determine where the patient and family members are, what problems exist and what disagreements they may have. We help them explore available options that may help meet their short-term and/or long-term needs.

We provide guidance so they can make informed decisions and choices on how to manage their issues. We get them to look at and consider things they may not have thought of in the past.

HPD: What are some of the things you look for in the current living situation?

Graham: We like to determine where the client and family are in making decisions regarding change. We evaluate the formal and informal support systems that are currently available to see if they could potentially be increased to help decrease the family's stress/burdens.

We do have to make sure there are no allegations of potential abuse or neglect toward the vulnerable adult or child. If there is potential abuse or neglect or an allegation of either of these, all healthcare professionals are mandated to report it to the appropriate state agency. In South Carolina, that is under the Department of Social Services, Adult Protective Services Unit or Child Protective Services.

Sometimes, caregivers just take on too much themselves with disastrous results. For instance, an 86-year-old woman may want to care for her 87-year-old husband, but she really can't. In a case like this, we'd have to call in a report to Adult Protective Services for an investigation. They are the ones who make findings of whether there is abuse or neglect.

HPD: What agencies or groups can you refer the family to?

Graham: Meals on Wheels, church groups and condition-specific organizations like Alzheimer's or cancer support groups. Needymeds.com is a good resource to help patients get their medications through a pharmaceutical company at no or low cost. Medical daycare — child daycare with a medical focus — is a good option.

Senior center outreach workers can make home visits. We explore if someone could potentially qualify for Medicaid or food stamps. The Department of Disabilities or Special Needs can provide help. The Lions Club provides eye exams and glasses for individuals in need. The Eldercare Planning Web site helps seniors and their families find local attorneys to help them with legal issues regarding estate planning. The United Way represents a number of charitable and service groups that assist people in need. We go through all these and more to find the ones that will be of the most benefit for each patient and will make the most powerful impact.

HPD: What happens if no agencies can help the client or family?

Graham: We try our best to get the patient whatever he or she needs. For example, when a patient of ours needed a special lift that Medicare wouldn't cover, one of our social workers got two different agencies to work together to buy and install it.

HPD: Figuring out what do about an ill relative is difficult and emotionally charged. How do social workers help family members through this process?

Graham: We urge them to do proactive, not crisis, planning. They need to do financial planning now, so we explain how a power of attorney works and recommend they consult someone on ways to protect their assets so they aren't all depleted by one spouse. We also discuss end-of-life issues, such as medical power of attorney, living wills and hospice care. We want them to think about more than just tomorrow.

HPD: What if the family doesn't want to cooperate with a social worker?

Graham: Medicare says we can't force anyone to work with us, even if they're in obvious need. We don't want to abandon anyone, but if they don't want us there, we will try different approaches like sending appropriate materials with the skilled nurse or therapist. Sometimes, we have to accept that people live from crisis to crisis or want to continue "making bad decisions."

HPD: Why is caring for a sick relative more difficult these days?

Graham: More women work outside the home now, so no one is available during the day to care for the relative. Families aren't as large as they used to be, and even if there are a lot of children, how many of them will step up to help Mom or Dad? Maybe one or two. Maybe none. When patients and their families need help, we connect them with the resources that can provide assistance.

HPD: It seems like social workers have so much to do. Shouldn't home healthcare providers get more involved?

Graham: We have the training and experience to sort through and process information. We can step back and look at the big picture. We hear what's said and what's not. We help people identify their own problems and solutions. We take the emotional "hyperness" out of the situation and bring it down to a level where the family will be able to do something constructive.

It's understandable nurses and aides might want to help clients and their families since they can become very close to them. But it may be difficult for them to be totally objective because of the hands-on care they provide. If they see family members are getting stressed, the best thing they can do is for everyone involved, including themselves, is to refer the case to a social worker.

Health Professional Digest