The very idea of caring for a family member in a different zip code—much less a different time zone—has little precedent. Go back 100 years and most extended families shared a single dwelling. At the most, grandma and grandpa lived across town. Today that’s all changed. The centrifugal forces propelling family members far and wide seems only to be increasing. A 1997 study estimated that more than 7 million Americans were distance caregivers. More recently, the National Council on Aging [NCOA] projected that the number of distance caregivers would increase to 14 million by 2012.
While it is well known that caregivers in general are more prone to depression and physical illness than the rest of the population, few have looked into the particular challenges for those who do so from afar. One who has is Polly Mazanec, Ph.D., assistant professor at Case Western Reserve and an advanced practice nurse at University Hospitals Seidman Cancer Center. I spoke to Mazanec about her findings, which were published recently in Oncology Nursing Forum.
Q: Looking at the differences between local caregivers and distance caregivers, what jumps out at you?
A: Long distance folks were significantly more anxious and the female caregivers in particular had higher depressive symptomatology. But what was most concerning, both groups had distress scores that exceeded the National Comprehensive Cancer Center guidelines for intervention.
Q: In other words, they ought to be getting help. Are they?
A: Local caregivers are getting help. Distance caregivers are not. In my work as an advance practice nurse in a comprehensive cancer center, there is a whole team to support the patient. There are multiple opportunities for care, including emotional and spiritual support. The team can also assist the family, both with practical matters and general guidance. With distance caregiving, families are left out in the cold.
Q: What are the greatest sources of stress for the distance caregiver?
A: The uncertainty and the guilt. Not knowing exactly how a patient is doing from day to day; wishing one could be there to provide more support; not knowing when or how often to visit. In many ways, that last one is the hardest question: if one can only afford to come visit for one week, when should that be? There’s the cost of travel, the commitment to a job, and the competing needs of one’s own family.
Q: In your article, you described a caregiver whose mother had advanced cancer. She waited until after the chemo to make her visit, but found her mother terribly debilitated and barely able to communicate. This individual was filled with regret, and wished she had gone earlier. When is the best time to pay that visit?
A: Just as when people ask, “Is my loved one dying?” we can’t answer that question exactly. But, we can help the caregiver decide on the timing. Some have a relationship where they would like best to be helping with the details, cleaning, administering medications, and so forth. Others would like to be there when the patient is feeling better so they can talk, do a “life review,” or spend time going to lunch and doing something fun. It really boils down to the need for improved communication both with the nursing and support team and among the family.
Q: Not all families are good at communication. It’s not too hard to imagine some parents responding: “If you were a good son or daughter, you wouldn’t come for a one-week visit. I’m dying and I want you to move out here for six months.”
A: Every family has issues. If a parent were to say something like that, it would almost be a gift. I would look at that as an opportunity to have a family meeting, even if it had to be by video conference. At the meeting, the support team would encourage the patient to talk about the anxiety that was causing the patient to wish for something that wasn’t possible. It’s essential to address those disruptive feelings before all that guilt is placed on the caregiver.
Q: Who should people turn to to help facilitate the discussion?
A: Typically advanced practitioners in palliative care are trained to do that. Some communities may have a palliative care team available through their local hospitals or hospices which would be even better. And of course, if the person you’re caring for is in hospice, they’ll have the team.
Q: And if the patient is not in a support network of some kind?
A: First, you should access their primary care provider. They’ll know counselors in the community who can facilitate a family discussion. Second, two websites are very helpful: The National Alliance for caregiving, and the National council on Aging. Both have good links for local counseling. These sites also have a lot of great help for practical needs—paying bills, healthcare, transportation, and so forth.
Q: Is distance caregiving ever an advantage?
A: It can be. For our study, one person said a parent who was normally uncomfortable with personal matters seemed able to speak more freely over the telephone. I also hear from some people that the distance allows the relationship with a parent not to be all about the illness; the discussion turns to grandchildren or the patient’s relationship with people in the community.
Q: In communicating long distance, what’s most important?
A: Being upfront, expressing your true wishes to be able to help as best you can, despite the limitations. For the caregiver, it’s also important to remember that it’s okay to have those feelings of guilt and worry: that’s actually part of the job. It’s certainly not an easy one. Things are so different from 100 years ago when everyone lived next door.
Steven Slon is the Editorial Director for The Saturday Evening Post. This article was first posted at http://beclose.com/