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Toolkit for Caregivers

Guidance, Support, and Advice


This toolkit is designed to provide you with guidance, support, and advice. Whether you have been a caregiver for just a few days, or for several years, this resource is your guide to supporting a loved one dealing with lupus. The topics include self-care, setting limits, how you can help, managing finances and legal matters for your loved one, and helpful forms and templates for tracking vital information.

ABOUT CAREGIVERS


Caregivers need a support system too

Caring for a loved one who is ill is often challenging, but you should not try to take on being a caregiver alone. Identifying people in your life who can be reliable sources of support and comfort ensures that there is someone to turn to when you need help—someone who will lift you up and give you whatever you need with a moment’s notice.

Support systems will be different for each person. Look at the people in your life who might be a source of support and ask them if they mind being a shoulder to lean on.

  • Family members – A diagnosis of lupus affects the whole family; you may find that cousins, aunts, uncles, and siblings will empathize and naturally step into the role of supporter.
  • Neighbors– People in your neighborhood often can provide a home-cooked meal during a particularly stressful time, or they can simply be a source of comfort that is always close by.
  • Co-workers– The people you work with can help by being understanding about your situation. You may need to telecommute, take a leave of absence, or use flex time, which will require cooperation and support of your colleagues.
  • Lupus support groups– People in this network have the benefit of having knowledge about lupus and can offer you strategies and suggestions based on their personal experience.
  • Healthcare team– Your providers, technicians, receptionists, social workers, and other staff can be a support system to engage with throughout the care of your loved one. In times of need, they have a better understanding of what you are going through and can be supportive and instrumental in your loved one’s care.

Above all, allow your support system to help you in any way they can. Knowing there are people who are there for you can make all the difference.

Becoming a lupus caregiver

One day, your life shifts in a new direction. This direction was unwanted and it quite possibly brought a frailty to your once firm footing. Your child, brother, mother or another loved one was diagnosed with lupus.

Life is change. You are witness to that truth by a life-altering word: lupus. What that word and the disease it represents have placed at your loved one’s feet produces fear and many questions. At this point, an attitude of fight not flight should be the name of the game, not only from the newly diagnosed, but also from you. Your family member or friend has a new and permanent moniker thrust on her or him: patient. You have as well; you are now a caregiver. Beyond the fear, beyond watching the pain that is endured, beyond the tests and biopsies, you are their lifeline to normalcy, though normal has changed.

I have six children. Two have lupus. One daughter was diagnosed with this disease while finishing college. Thankfully, her organs have not been severely affected. One of my sons was not as fortunate. He, at twelve, was diagnosed with lupus affecting the kidneys (lupus nephritis). It affected him gravely. When diagnosed, he was immediately hospitalized with what would become a six month stay at the Medical University of South Carolina.

I will forever remember the element of shock at his diagnosis. My family shared tears on more than one occasion. Through six rounds of chemotherapy and extremely high levels of steroids, my son was nearly lost to us during two separate episodes. With the seriousness of this disease, there was little time to think of myself as a caregiver. I just moved. I acted. I kept up with changes in dosing and administering medication, at times more than 20 different drugs. He battled seizures; he fought off approaching death as his illness ran rampant. I held his hand. I slept in his rooms. I tried to comfort him, first and foremost. I spent much of my time in the first few years trying to make him laugh. We watched more comedies than he might have wanted; I will be the first to say I needed them too. I was afraid too. As a caregiver, you need to cheer yourself up. Find the funny in any moment possible. Laughter serves both of you.

My health faltered a bit. I missed a lot of sleep and I am sure you as caregiver do too. My eating habits deteriorated. You must focus on your nutrition as you worry about your loved one. I learned that my health directly influenced my ability to care for him. I thought I could carry on through any inconvenience (as I saw it then), such as sleep deprivation because I wasn’t ill. This way of thinking gave way to poor health and made me a more fragile caretaker. You need to be physically and emotionally strong to carry yourself and your special loved one.

While knowing you must watch your health and knowing stress exists, becoming a caregiver is a change that comes naturally. Yes, there is confusing medical terminology and there are new skills to learn. You will adapt. Compassion is a part of your humanness. Nurturing, comforting and providing steady ground for another is ingrained in you.

This patient, this family member, this loved one will understand your need to care of yourself. It may not always show, but that knowledge exists. Take care of YOU for your sake and for his or her benefit. Always keep in mind that the two of you will expand an already strong and loving connection. A positive does grow from this negative.

Letter to a caregiver

To the ones supporting a loved one with lupus:

None of my family or friends have lupus. Many of them never had to cross paths with chronic illness until I was diagnosed 5 short years ago. It has been a huge learning curve for all of us. Lupus will present itself in many ways and everyone involved will go through a rollercoaster of emotions. There will be moments of uncertainty, defeat, and believe it or not, many victories. It starts to become very hard to distinguish when to be excited about the good news and when to be worried about the bad ones.

Sometimes I find myself getting frustrated with the ones around me because they can’t see that I’m in severe pain, or I’m so fatigued I can barely function, or that I am STILL thinking about the bad test results I got a week ago. The things I feel aren’t even present in their minds, but how can I blame them for that? I often don’t voice my frustration because it is extremely temporary— and if I do, I feel Instant regret. I realize that it is a state of despondency that I naturally experience when I’m feeling poorly. And I fall aggressively into guilt. I don’t want to feel that way about the people I know love and care about me.

I have watched family and friends fight medical battles, so I guess you can say I’ve been on both sides of the fence. And if there’s one thing I’ve learned, it’s that they both are EQUALLY as difficult. The stress, the worry, the sleepless nights and tears I secretly dropped and wiped away before the one suffering saw, drained me unconsciously. The feelings of watching someone I loved go through something that I couldn’t prevent or make better started to consume me.

I have much sympathy for the people who support me, maybe similar to the sympathy they have for me when I’m suffering. I’m not sure if there is even a word to express the degree of gratitude I have for each one of them.

I got lucky to have a boyfriend who makes me feel beautiful and powerful even on my worst days. So many people do not understand the battles couples face when no one is around. Let’s be honest, there are times when I’m in so much pain I couldn’t exercise if I wanted to. And sometimes on top of that, I’m taking loads of medications with weight gain, hair loss, and mood swings as side effects. It naturally casts insecurity upon me and it is so overwhelming. He never judges me and most importantly he makes me feel like the most beautiful girl in the room— no matter the time or place. He shows me the most organic form of love. He is my light in a room that sometimes feels so dark. My breath of fresh air when I feel like I’m drowning.  The most selfless person I have ever had the pleasure of knowing.

My best friend has been there through it ALL. I don’t think there’s a person out there who knows me better than her. I feel like when I hurt, she hurts and vice versa. She motivates me to keep going. She’s strong for me when I feel like I can’t carry the weight myself.  A piece of me would be missing without her.

And as for my parents and the rest of my family, I wouldn’t be the woman I am today without them. Everything I am, they’ve made me be. My mom and dad have sat through hours and hours of doctors’ appointments, spent days and nights at the ER, and eagerly awaited while I was in surgeries.  Unconditional love is such a powerful thing and sometimes goes unrecognized. My heart breaks when I think about how they may feel sometimes. I live the amazing life I do, because of them.

I hope this intensifies the importance of the position that you are in as a mother, father, boyfriend, et cetera of someone suffering from lupus, or from any chronic illness. As much as I wish I could enlighten you with some magic answer on what exactly to do—I can’t.

Just know, it’s okay to be angry.  It’s okay to have moments of weakness— trust me we will too. But there isn’t a day that goes by that we aren’t thankful for you. We understand it’s hard to be in your position. We understand you are worried just like we are. Be open and talk about it. Share what you are feeling. It’s nice to know we aren’t going through this alone.

Lupus may be the focal point in your life at times. It may seem as though it steals moments, keeps you and your loved ones from doing things you want to do, or puts stress on your relationships. What is most important is to not let it consume you. Be grateful during the good days and live the life you were born to live, lupus and all. Yeah, you carry a little more weight than others at times—be proud of that!

I would never wish lupus, or any chronic illness, upon anyone or their family members. But, I think we should shed light on the situation, and be thankful for the position we are in. Some people never get to experience the degree of love and appreciation that we do. Experiences like these will shape our rare disposition.

To the ones diagnosed with lupus, your appreciation and love for life are going to grow every day. You will learn to appreciate the people and things you never did before.

And to the caregivers, life wouldn’t be the same without you to support us. You are the most important people in our lives.

Like I said, it’s going to be a rollercoaster of emotions—I hope you’re strapped in.

– Alex Juda, Patient Survivor

ORGANIZATIONS THAT OFFER SUPPORT AND RESOURCES TO CAREGIVERS


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Clinical Trials

The Lupus Foundation of America works with partners to provide ways to participate in clinical trials near you. There are several ways to find clinical trials, including a quick search function provided by Antidote.

View Clinical Trials

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Donate Unused and Reusable Medical Supplies and Equipment

Ohio’s hospice has created a list of organizations and information about donations they will accept to assist families.

View Details

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