Figure. Denise and Mark ellis enjoy a sunday in the park with each other.
Jennifer and Jason Elsenbroek have been married for 12 years, but there are still times when communication is difficult because of her traumatic brain injury (TBI). That's why they do whatever they can to face her illness together, including attending a TBI support group. Jennifer started the group through her church in Chatham, MI, two years ago, and Jason has become a frequent face by her side.
“Even little things like a cookie tin scraping across a table top or the sound of someone chewing can be like nails on a chalkboard for TBI patients, and that can be very difficult for spouses to understand,” explains the 35-year-old stay-at-home mother, who has dealt with TBI since a car accident at age 16. “It really helps us when Jason comes to the support group meetings and sees that it's not just me who is irritated by these things. Knowing that it's part of the disease helps him to be more understanding with me at home.”
There is growing concern among the health care community about providing emotional and practical support for the spouses of people suffering from Alzheimer's disease, multiple sclerosis (MS), stroke, Parkinson's disease, and other neurological disorders—especially as the numbers of people living with these conditions is expected to increase dramatically. While the benefits of caregiver support groups are widely recognized, providing support for patients and spouses as a couple is also becoming an important part of the equation.
“Traditionally, we take the caregiver and talk to them in one room, and talk to the patient in another room,” explains Mary Mittelman, Dr. P.H., director of psychosocial and support programs at the Silberstein Aging and Dementia Research Center at New York University (NYU) School of Medicine. She is currently leading a three-year clinical trial to determine the efficacy of couples therapy for marriages in which one partner has Alzheimer's.
“The next logical step is to teach couples to open up to each other and take those skills home, into their marriage. Open communication is the best way to ward off the resentment, guilt, and other hidden feelings that both the ill spouse and the caregiving spouse can have difficulty expressing,” says Dr. Mittelman.
A study conducted by Purdue University in Indiana examined how the perceived burdens of caregiving spouses influenced how well people with Parkinson's disease managed their condition. As the caregiver's worries about their own health, social life, and financial status increased, so did the negative impact on how the patient managed their illness. The study concluded that sharing these concerns as a couple with a trained counselor and educator was helpful for both spouses. Sharing perceived burdens and dealing with them together seems to be the key to success. Corinne Samios McCrosky, age 69, has been a caregiver for her husband John, age 76, since his stroke in 1995. Two years ago, when John began showing signs of Alzheimer's, the couple participated in six weekly therapy sessions at NYU for two months (the duration of counseling in Dr. Mittelman's study). “John has been a very private person for the 40 years I've known him, and I'd hear things from him during our sessions that that I wouldn't otherwise know,” Corinne says. “The couples therapy gave John a safe space to tell me things that he wouldn't normally say because he didn't want to hurt my feelings. And sometimes he'd just think about things we talked about with the therapist and bring them up to me alone later.”
One issue that came up for John and Corinne was that he didn't want her helping him all the time and doting over him. At the same time, there were many instances where he really did need his wife's help: to get in and out of the tub, remind him to take his medications, and a host of other safety issues and daily practicalities. “We talked a lot with the counselor about when it was okay to help John, and when I needed to let him try things on his own,” Corinne recalls. “I had to learn how to give him enough rope but also be there just in case he needed me.”
For patients with neurological conditions that affect their ability to communicate, such as Alzheimer's, Parkinson's, and TBI, the benefits of improving the level of understanding with their spouse may reach far beyond the marriage. Many times, these patients rely on their partner to be their advocate in the world. For example, while it's been nearly 20 years since the car accident that left Jennifer Elsenbroek with TBI, she still often talks slowly, deliberately searching for words.
“One of the long term effects of the brain injury is that it makes it difficult to explain myself; and the more frustrated I become, the harder it is,” Jennifer explains. “Luckily, my husband has learned to be my advocate when I'm overwhelmed or think I'm articulating something well and the other person is just not getting it. This happens all the time—at the doctor's office, the dentist, or even at the mall. Jason knows me so well that he can interpret things for me.”
In their TBI support group, which has about 20 members—two or three of which are spouses—the Elsenbroeks set an example for how to advocate tactfully. Jason will take over for Jennifer if she's struggling to tell the group something, and other couples have begun to do the same thing. “Sometimes, there's a fear of interrupting your spouse,” Jennifer says. “But people see that there's a polite and gentle way to take over, and it's really a relief for the TBI patient to have a partner who knows when they need help.”
A 2005 study from the Karolinska Institute in Stockholm concluded that educational support groups for couples may improve the quality of life for spouses of stroke patients if they attend at least five times during a six-month period. Both spouses reported feeling a significant decrease in negative feelings and an improvement in quality of life over time. The Karolinska study suggests that support groups work best when they are ongoing and consistent. Like just about everything else in life, hard work pays off.
Dr. Mittelman admits that the two-month therapy sessions that her study permits may be only a starting point for some couples. The good news is that most of the couples who attended all six therapy sessions reported positive changes in the quality of their communication and their marriage.
For Corinne Samios McCrosky, the couples therapy sessions she attended with her husband two years ago have led her to seek consistent support for herself. “It seems like different issues are coming up as the illness progresses, so I find that I need ongoing support on a weekly basis,” says Corrine, who goes to individual counseling as well as a Thursday morning support group with 13 other Alzheimer's caregivers. As far as couples therapy goes, however, she says that while it was helpful during the early states of John's illness, he no longer has the mental alertness or retention to benefit from it.
For many, attending a support group on a consistent basis becomes as much a social outlet as an educational resource.
The Parkinson's support group that Pat and Marge Moylan belong to in Herkimer, NY, is the mainstay of their social life. Thirty-five couples belong to the group of 133 members, and the Moylans have known some of them for the past 15 years. They've had Saturday “brunch bunches” for people who couldn't get to the monthly meetings and a big picnic in July. Their connection, though, goes way beyond social gatherings.
“We have a wonderful support system in place, and we all call members who are having trouble to see how they're getting along” says Marge, 63, who was diagnosed with MS in 1984 and then Parkinson's in 1986. “When someone dies, one of our members calls everyone on the roster to make sure that they know. That kind of support means a lot to the spouses—sometimes, they keep coming to our meetings for months or even years after their husband or wife dies.”
For Denise Ellis, 42, of Port St. Lucie, Florida, the MS support group she started through her church in 2003 is like a family, so it just makes sense for spouses to join in. “At first, only a few spouses would attend the monthly meetings because they were driving,” says Ellis, who encouraged more members to bring their husband or wife, and now there are eight couples among the 25 members. “The truth is that MS doesn't just affect the patient, it affects the spouse and the entire family. The best thing that you can do to combat the disease is to face it with your spouse, as a united team.”
Ellis says that the close-knit nature of the group helps her to bring up intimate issues, like sexual dysfunction and the fatigue that can leave MS patients feeling like they don't have the energy for romance or much of anything else. “I heard one gentleman say that he just thought his wife was being lazy, not wanting to do anything,” Ellis recalls. “When he came to the group, he began to see she wasn't the only one dealing with the fatigue.”
The function of couples therapy is different from being in a larger group with other couples and individuals who are dealing with a common neurological illness. Which one is right for you depends partially on the illness you or your spouse is facing and partially on your personal preference.
“One of the benefits of couples therapy is that spouses deal with each other directly in the session in the supportive presence of a third party,” says Ursula Auclair, C.S.W., a licensed social worker who is one of the counselors in the NYU study with Alzheimer's patients and their spouses, and has also led support groups. “They're able to replicate their home life and then adjust their interactions with suggestions from the therapist.”
According to Auclair, Alzheimer's patients don't do well with lots of stimuli, especially when dealing with emotion-laden issues. So for them, couples therapy is less stressful than group therapy. On the other hand, Denise Ellis says that there can be power in numbers.
“I've seen a real look of relief on the faces of spouses and MS patients alike as we talk about some of the issues they are afraid to discuss one-on-one,” Ellis says. “They are so concerned with hurting each other's feelings that things just don't get brought up. We'll bring up their fears about the MS patient winding up blind and in a wheelchair, for example, and, assure them that this doesn't have to happen. That's the beauty of support groups—everyone is going through the same issues, together.”
Marge and Pat Moylan have been so successful in bolstering their Parkinson's support group to 133 members, including 35 couples, that they were recently asked to help folks in a neighboring town start their own support group. Here are some of their tips for success:
BRING IN SPEAKERS Make sure they address the needs of spouses as well as patients.
SPREAD THE WORD“People want to know they aren't the only one—talk up your group at your church, your book club, wherever you go,” says Pat.
PUBLISH Put out a quarterly newsletter.
HAVE FUN Arrange social gatherings outside the weekly meetings.
COUPLE UP Encourage folks to bring their spouses. “Sometimes, people just don't know they are allowed to bring a spouse—and they're happy to do so,” says Pat.