Taking Care of Lupus Caregivers

Lupus affects people who love people with lupus. It's a simple idea,  but an important one. Everyone with lupus knows the struggles of post-diagnosis relationship woes. Some friends and family distance themselves, even disappear. On the flip side, people who support you are there because they want to be, and they are there through ups and downs. When you're in a flare or going through a tough period, it's no doubt most difficult for you since you are the one with lupus. But it's also difficult for them to see you fatigued, in pain, hospitalized, and so on.

Lupus caregivers are some of those people who stuck around, who support you, and are the people in your life who help you on a regular basis and/or when you experience a flare. They do it because they love you. And just like people with lupus need support, lupus caregivers need support too.

What Caregivers Do

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What exactly is a lupus caregiver? In the simplest sense, it's a person who provides help to a loved one with lupus with some regularity. Maybe they help you when you have a flare. Maybe they offer you more constant support on a daily or weekly basis.

If you are married or partnered, your spouse is likely your primary lupus caregiver. You might have more than one, and they might provide you with different levels of care. They can be friends or family—anyone in your support network who offers you this type of care.

For example, if your caregiver is your spouse, tasks they might help with could include doing the laundry because it hurts you to carry a heavy basket to the laundry room, or because you are too fatigued to complete the process. They might help you manage your calendar because they know your lupus fog sometimes leads you to forget appointments. They might be the ones who go with you to doctor visits, take notes for you and make sure that all of your questions get answered.

They might be your drivers, the person who manages and pays your bills, keeps track of your daily medications.

The list goes on.

Help Lupus Caregivers Understand Lupus

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Caregivers who know what you experience day after day with lupus probably have an excellent understanding of how lupus impacts your quality of life, or what lupus symptoms are like in real life (as opposed to a list of symptoms on a website). But it never hurts to offer them opportunities to learn more about lupus.

For example, when a loved one attends a support group it provides them with an even deeper understanding of life with lupus. It helps them understand how lupus impacts different people in real ways, and how some of your symptoms—like fatigue or lupus fog—are common and not something only you experience.

When they attend lupus-education events, just like it broadens your understanding of lupus, it broadens theirs. Everyone in the lupus community can learn something from attending these events. New discoveries are found; new treatments are explored. It's important to stay up-to-date on the medical side of lupus.

Contact your local lupus organization to find out when they hold lupus-education events. If you can't make it in person, these organizations often archive their events on YouTube. You can find plenty of information there. Just make sure the videos come from reputable sources.

A caregiver can also seek individualized support from a psychotherapist. If they go this route, it's a good idea to seek out someone with  experience working with caregivers.

Good Communication Is a Major Goal

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It's important for you and your caregiver to openly and respectfully communicate about how you both are feeling. Having lupus is hard. Being a caregiver is hard. You spend a lot of time with your caregiver. The goals of good communication between you two are to do your best to make sure that time together goes as well as possible, and that your relationship with each other strengthens despite the stress lupus brings.

  • If they're doing too much for you, this can lead to frustration. Perhaps they are smothering you, which makes you feel they don't understand all that you are capable of doing on your own. If you need them to do more, it's important to kindly be clear with them about what they can help you with. Together you will find your rhythm and balance.
  • If they start to feel overwhelmed and stressed by caregiving responsibilities, they need to know that they can express this to you. Otherwise, keeping this to themselves can fuel stress and overwhelm, which can lead to burnout and depression.

    A note on what's appropriate for caregivers to share with you about their mental health: They should communicate in a way that doesn't purposefully make you feel guilty, and if they do, then you need to gently make them aware of what they are doing. Communication, not guilt, should be the intention of their sharing.

    Telling you that they are stressed for the purpose of letting you know that they need a outside support or a break is appropriate. If you find that they share a lot about how stressed they feel, this is likely a sign that they need a break, a support group and/or a therapist. Such frequent sharing can also lead you to feel guilty, even if it's not their intention. It's often better if they seek outside support because it gives them the opportunity to freely share their feelings while preserving yours.
  • When you don't feel well, it can impact your mood. Do your best not to take this out on your caregiver. If you do, communicate about what led to you losing your patience and apologize.
  • Just like it's important for you that they understand what it's like to live with lupus, it's important for you to understand that caregiving is challenging because they are taking on added responsibilities. Furthermore, when they share their feelings about the stresses of caregiving, it's important for you to know that it's not personal, and a natural side effect of caregiving.

    If you take their stress personally, you might start to believe that they don't want to help you or that you are a burden to them. That's not true. They help you because they love you, and you would do the same if the situations were reversed.
  • Communication also includes expressing gratitude for what they do for you. A simple "thank you" has a big impact.

    Also check in with them: Ask them, "How are you? Do you need anything?" Asking your lupus caregiver if they need anything might seem like a question they should be asking you, but showing gratitude and concern helps them know they are appreciated. It helps caregivers to know you value what they do for you.

    Checking in with them also helps you know when their stress levels are rising and when they need to seek support or take a break.

Caregiving and Depression

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The feelings of overwhelm and stress that a caregiver is prone to can lead to depression if ignored.

Caregivers do what they do out of love, but they can get stressed too. This is not to make you feel guilty. They wouldn't support you if they didn't want to. But, as mentioned, lupus affects your loved ones, too. If they didn't love you, then it wouldn't affect them. The closer they are to you, and the more your life has changed, the more lupus has affected them, as well.

Anyone in any type of helping role is prone to burnout and depression, which is why it's important to make sure caregivers are taking good care of themselves. If they keep going and going without a break for self-care, remind them that if they become sick from the stress, then they will be unable to help you.

Taking care of themselves is a way of taking care of you. (And likewise, you taking care of yourself and managing lupus is a gift to your loved ones).

Know the symptoms of depression so you know what to look for. A change in your caregiver's behavior and mood is a clue that something might be wrong. A busy caregiver with a packed daily schedule might not even notice the difference, but you would.

Some symptoms of depression are insomnia (trouble sleeping), hypersomnia (sleeping too much), unintentional weight loss or weight gain, being sad or teary often, increased irritability, a lack of pleasure or interests in things they typically enjoy, difficulty concentrating, frequent thoughts or talk of death or suicide.

If they talk about suicide, call a suicide hotline (based in U.S., 1-800-273-TALK (8255) to ask for advice on how to approach your loved one or what to do. If you fear that they are in immediate danger of hurting themselves bring them to an emergency room or call 9-1-1 (in the U.S.) or the emergency number in your area.

Finding Emotional Support for Lupus Caregivers

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Considering their risk for increased stress levels, overwhelm, burnout, and depression, it's important for caregivers to obtain support.

Ideally, lupus caregivers would find support groups for lupus caregivers. Ask your local lupus organization if they offer this type of group. You can also ask your rheumatologist, hospital social worker, or people in your support group if they are aware of any.

If there are no lupus caregiver support groups, your local lupus organization might start one if they receive enough interest, or someone in your support network might be interested in starting one.

If these are not possibilities, ask around for a group for caregivers of people with chronic illness. And if that's not available, try for a general caregiver support group. These groups might be in-person but they could also be online.

There are several good resources for caregiving. The National Alliance for Caregiving  and the Caregiver Action Network are good places to start.

Allow Your Loved Ones to Be Part of Your Life with Lupus

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It can be hard to ask for and accept help from loved ones, but when you're not feeling well, you will need and appreciate the help. Loved ones sometimes want to be supportive and be helpful to you but don't know exactly what to do. Asking for help in concrete ways will help you both. It will help you ask for exactly what you need and it will help them know exactly how to help.

Saying, "When I'm in a flare, it would be great if you can bring dinner for me and my children" is an example of clearly stating what you need and also asking for help.

Ask for help from people who can give you what you need, people who have shown concern and support. Delegate tasks in a way that makes sense. For example, you wouldn't ask someone to cook who doesn't know their way around a kitchen. Or if you need someone to pick up your children from school, you'd ask someone with a flexible afternoon schedule and access to transportation if the school is not within walking distance.

You Are More than Lupus. They Are More than Caregivers.

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Managing life with lupus and being a lupus caregiver can both take center stage in your lives. But just like you are not lupus, your loved ones who helps care for you are not only caregivers.

Be careful that your relationship does not turn into one where you only relate to each other as caregiver and the person being cared for. This turns you into one-dimensional people and pushes all the other parts of both of you to the background, including aspects of your relationship that make your bond unique.

Take time to relate to each other in other ways. Talk, laugh, do things together.

Maybe you need a break from each other, which is completely normal and expected. Spend some time apart. Ask other loved ones to help out and give your primary lupus caregiver time off.

Caregivers Need a Support Network, Too

Caregivers are an important part of your lives and of the lupus community. Just like it's important for you to have a support network to help cope with lupus, caregivers need one too. And just like your support network can include a variety of people and things— friends, support group members, online groups, articles—so can theirs. The lupus community is just that—a community, one that is here to help people with lupus, their loved ones, and their caregivers.

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