Caring Others Overview Part II

Several people who care for and about loved ones with lupus shared some of the difficult issues that have become part of their life. In this issue, we will explore some tangible ways that loved ones give support and cope.
After receiving the diagnosis of lupus, a patient feels a wide range of emotions.  Family members and friends who care for and about the patient also feel many emotions.  Perhaps the most challenging one is confusion about what they can do to take away the pain, or at least make things easier.
“I come from men in a background that usually fix things,” says Alan, who has been together with Barbara for 10 years.  “In the beginning, I found myself wanting to help more, to do something, to make things better, to be the warrior.”
Knowing when to step in requires observation, understanding, and, most of all, a willingness to communicate.
Alan says, “When she will allow it, I will do any and all tasks from laundry to shopping to purchasing her new automobile.  But I’m always careful to ask, ‘may I?’ or ‘would you mind if…’ so she never feels as though she can’t.  I don’t want to take any of that away from her.”
“Smothering can be carried to extreme,” says Joyce, mother of Maureen.  “Once the person has been diagnosed and they know what it entails, there’s a lot they have to do themselves.  But it is extremely important to be a good listener and help if they want help.”
Jay, daughter of Jean, says, “ My mother and I speak probably every other day.  I’m always asking her what she’s doing and what she needs.  For example, I’ll flip her mattress, or move furniture.  It took awhile to get to this point, but she knows that I want to help, and she’ll ask for help, now.”
Communicating feelings is also important in maintaining an open, honest relationship.
“Don’t be afraid to talk with the patient about how they feel and about how you feel,” says Carlos, who co-facilitates a support group for caring others in San Bernardino, California.
Tim, who also co-facilitates the same support group, says, “It’s okay to be angry, okay to have regrets, to vent as long as you have the perspective that you ultimately will have to understand that your life and their life will change.”
Bob, who has been married to Jody for 18 years, agrees.  “Once somebody has a chronic illness, things will never be normal again.  What you have to come up with is a game plan that takes into account how you care, how she cares, and what you’re going to do about it.  You have to come up with a new normal.”
That new normal may entail changing leisure activities from outdoors to inside, coordinating treatment with the patient’s healthcare professionals, purchasing new “gadgets” (such as jar openers or grocery carts), or acting as a kind of “lupus interpreter” between the patient and others.
“Unless you’re living with someone who has lupus, I think friends and family don’t understand it,” says Nicki, who has been together with Pam for 9 years. “I’ll say things like, ‘She only has a limited amount of energy.  You have to take one or two things out of the day, instead of having four or five activities.’ I just try to speak up and educate them.”
As if adapting to living with someone with lupus weren’t change enough, the caring other must also sometimes make other significant personal changes.  These may include giving up a sport or hobby, moving residences, of even changing jobs.
“My priority is always Barbara,” says Alan.  “For those caregivers who find that the job within their profession doesn’t help meet their personal goals, make a change so that you can work in an environment that allows you the physical and emotional freedom to do what you have to do for your mate or your spouse.”
“They’re still your child, your wife, your loved one,” says Bob;“You can’t think about how your life stinks and how you’re going to get back to doing things you dreamed about.  If your priorities are straight you’ll do what you need to do to adjust.”
“There’s no such thing as, “I can’t,” says Alan.  “If you look for the opportunity, you will.”
Besides willingness and flexibility, another tool vital to making a ‘lupus relationship’ work is a good sense of humor.
“When we look back at the week we spent at the Mayo Clinic, there are a lot of things we laugh about because we made it fun,” says Bob.  “You need to do that every day.  You need to find things that are humorous.”
Carlos laughs, “We call the absent-mindedness a ‘lupus lapse’.”
And laughter leads right back to communication, perhaps the most important tool in any relationship, but especially between a lupus patient and caring others.
“At first, I’m sure I tried to take too much care of Fredi,” says Jeff.  “It’s a learning process. Communication is important.  I want to treat her as normally as possible.”
“You don’t want to seem as though you’re dictating to them.” Says Bob.  “The two of us talking through things makes it not seem like a liability or a burden.”
“Physically, you’re going to see change,” says Jay.  “Mentally, you’ll see change as well.   The person you care about might not want help at first.  Try to understand that their core is still the same.  Little things can make a big difference.  Start to do them slowly.  It’ll be a help.  Slowly, they’ll start to ask.”
In the next article, we will talk about what loved ones can do to care for themselves -  keeping in good shape emotionally, mentally and physically – while still providing support to their loved ones with lupus.