Reprinted with permission of “THE US IN LUPUS”
If we don’t have lupus, we know someone who does, or we know someone who has another chronic illness or who cares for someone who does. The impact that a chronic illness has on the caregiver is great and if that caregiver doesn’t get the break-TO MEET HIS OWN NEEDS-how much help can he be to the person who IS ill? The following are a few tips for the caregiver:
“Taking care of your own needs
Your wife. Your daughter. Your dad. A dear friend. If someone you care about has lupus, you are likely to be affected, too.
And if you’re that person’s primary caregiver, you may feel overwhelmed. Helping someone with a serious chronic disease is a tough job—and it can be a lonely and exhausting one. A common saying among people with lupus is that it isn’t a sprint…it’s a marathon. For caregivers, it’s important to take care of yourself along the way.
Master the uncertainties
The unpredictable nature of lupus, with its cycles of flare and remission, can be challenging. Does that stiffness in her joints mean she’s having another flare? Will he be up for our trip next week? Is she just tired, or is it lupus fatigue that’s been slowing her down? How well you handle the stressful uncertainties of lupus will shape how well you manage as a caregiver. So take one day at a time and keep the following in mind:
- You deserve a break Your loved one may cycle between needing a lot of help and being mostly self-sufficient. One day you may be called on to help out physically—to help with chores, carry all the grocery bags, go to the pharmacy. Other days it may be the emotional impact of lupus that requires your steady and reassuring presence. And on still others you’re not needed at all. The see-saw of it all can be challenging. It’s true that you’re not the one with lupus, feeling the intense fatigue or joint pain or other symptoms. But you’re still human, and you deserve the right to have an aching back and get a cold and feel tired—and even complain about it. Accept that you’re doing the best that you can do, so cut yourself some slack, and take a break when you need one.
- Ask for help Look around. Most likely, there are others who will pitch in and help—and may actually be waiting for you to ask. Have your brother-in-law pick your loved one up from the doctor’s office. Ask a friend to swing by the grocery store. It doesn’t mean you aren’t taking great care of your loved one if you ask others to help out.
- Hold on to who you are Avoid losing yourself in the caregiver role. Stay in touch with your own identity. Keep your Saturday tennis game going. Read the book for your next book club—and go to the meeting. And don’t feel guilty about it.
- Take your emotional pulse Take note of how you are doing emotionally as time passes, and get professional help if feelings such as depression, restlessness, resentment, or irritability, develop at any point.
- Connect with others The caregiver role can be lonely. But there are tools to fight back against the isolation. Make connections with others online or through a lupus caregivers’ support group that meets regularly. Ask the doctor or go online for links to local groups through a lupus advocacy group. These kinds of connections, and the awareness of what others deal with, may help you understand that you are not alone.”