People who care for others with chronic illnesses have many concerns to worry over, take care of, and resolve. But sometimes, a crucial part of that care is overlooked - a person, an individual: the caretaker him – or her-self. In this issue of Lupus Line, we will focus on the caretaker, and some of the tools he or she can use to rejuvenate, refresh, and maintain health and well-being in the midst of the unpredictable world of living with lupus.
Caregivers sometimes have an almost super-human notion of what is expected of them as they help a loved one cope with lupus. While we as lupus patients need strong support in our day-to-day struggle, it is unrealistic to think that the caregiver doesn’t need some attention, too. Even though he or she might not always realize that, at first.
“I think I’m expected to be strong, not have the emotions, cry, or express worries or concerns,” says Nicki, who has cared about and for Pam for ten years. “Every now and then, of course, I show them. But I think this is what I’ve had to do inmy own private times.”
“Sometimes, caregivers have as much stress as the patient does,” says Misti, a lupus patient and facilitator in a lupus support group in the Inland Empire, California, USA.
That stress can often bring about new problems in a relationship that is already strained by the upsetting nature of lupus. A caregiver could become alienated from the loved one, fall ill, or suffer other negative consequences. But, Misti says, “Caregivers are responsible for their own welfare, and that’s hard if you’re not given permission to express the feelings you have about your loved one’s illness.”
To help ease some of the stress felt by caregivers. Misti’s husband, Tim, became a co-facilitator of a caring others support group.
“I went through the transition from denial to having a fatalistic outlook to acceptance and participation,” says Tim. “Then I really started thinking, ‘I’m not out here by myself with these thoughts and feelings and frustration. I’m sure a lot of people are dealing with these problems.”
Besides providing information, the group also gives others the opportunity to express their emotions, which can be very beneficial to the relationship.
“When you disconnect emotionally, you pay for that down the road,” says Tim. “It’s okay to be angry, okay to have regrets, okay to vent. The format of the group is open, informal, and interactive. I invite people to not expect pearls of wisdom, but do expect people going through the same things you are. No judgements.”
Still, caregivers can sometimes judge themselves, harshly. At those times, it is important to remember that, like the lupus patient, the caregiver is human, too.
“When I have a cold,” says Jay, the daughter of Jean, “I sometimes fell bad to be complaining at all, because it can’t be nearly as bad as how my mother feels. But you have to take time out for yourself, as well.”
In addition to maintaining a healthy lifestyle, the caregiver should not feel as though his or her activities revolve exclusively around lupus.
“I always have activities outside the home, especially classic car restoration,” says Tim. “I’m really now starting to enjoy and value family life, too. For instance, I can play on the computer at home.”
“I take personal time,” says Carlos, who co-facilitates the Inland Empire (California) Caring Others support group and is married to Linda, a lupus patient. “I belong to a bowling league. I’ll also work on the computer at home. That way, we have time to ourselves, but we’re there for each other, too.”
“My interests have stayed the same. My friendships outside the relationship have stayed the same,” says Alan, who has been with Barbara for 10 years. “I did take up golf. Barbara encouraged that, and also prompted me to wear a long-sleeved shirt and sunscreen!”
To keep the relationship strong, however, it’s important to share activities with the loved one, too.
“We have our own things. I like posters, she likes jewels,” says Irv, married to Brian Ann for 21 years. “And I have a lot of things I can do on my own, such as reading or watching a show. But you start growing in a different direction if you’re not sharing things together.
Bob, married to Jody for 18 years, says, “ We had to come up with other things to do besides biking and hiking and going out in the sun. But the whole thing about a relationship is growing together and coming up with new and meaningful things. Having a chronic illness in the relationship just means you have to be more obvious about it.”
Keeping in touch with the inner self, through prayer or meditation, can also help support a caregiver.
“It took a couple of years to calm down,” says Nickie. “Now, I kind of renewed my spiritual side and pray a lot. There’s been more optimism within me.”
“The key word is: ‘patience,’” says Tim. “If there’s a nugget of wisdom for me, it’s to slow down for a minute and pray for patience. It goes a long way.”
The lupus patient can assist his or her caregivers, too, in reducing the stress of living with a chronic illness.
“What really helped me through this whole thing is that I had somebody to start off with who was dealing with is so well,” says Tim.
“I give Jody a lot of credit,” says Bob. “She’s a strong person, and she’s certainly done her part to try to keep things together and good. She always has a terrific attitude.”
“I like my mother,” says Jay. “If she wasn’t my mother, I would like her.”
Living with lupus is never easy for the patient. But for the caregiver, it is also difficult. With open communication, some creative alternatives to past activities, and understanding on both sides, however, a relationship can survive and thrive – with lupus, in spite of lupus, and beyond lupus!