Patients, what advice or tips do you have for caregivers?
My fiance and my mom. They are the two people I turn to most when I’m having lupus issues. My fiance more than my mom because he sees me every day. He sees me at my worst. I try to make sure he sees me at my best, too. He has been an awesome support and is so patient with me.
Are you a lupus caregiver? Here is what I think is important for you to know:
- Make yourself #1. Take care of yourself first. Take a break if needed before you get burnt out. Take a break before you get feel frustrated or impatient. Those are both good signs that you are doing too much.
- It may take some time to find the right balance of care and giving space. Try not to be frustrated with the Lupie, or yourself.
- Learn as much about lupus as you can. When your Lupie is first diagnosed it can be a very emotional time. Do some research on what emotional effects they may be feeling, and how you can help them to deal. Knowledge of the disease itself is also invaluable. You will know more of what to expect. Being knowledgeable and asking questions shows you care, and that can mean everything.
- Try to find out all the aspects of the care they need day to day, and just keep it filed away in the back of your head. They may not need much help now, but it doesn’t take long for lupus symptoms and the need for more involved treatment to change. If they go into a flare, they may need you to get the right medication for them, help them with an injection or with some other aspect of their care. It is always better to know ahead of time how to do what they need, rather than learn on the fly!
- Remember to not always try to fix, but always listen. Sometimes we just need an ear to hear.
Thank you for being a caregiver. It takes a special heart.
What advice do you have for caregivers of people with chronic health issues?