CAREGIVER SUPPORT Amgen By Your Side Is Here to Support Your Important Work as a Caregiver

We understand that the health of the caregiver is just as important as the health of the patient. The following resources can help ensure that you, as a caregiver, are doing as much for yourself as you are doing for others.

Caring for Caregivers

Caring for Caregivers Video
Read Transcript

Today, we’re going to talk about how you can care for others while also taking care of yourself. Here’s what we mean. 

Think about a time when a friend of yours was struggling. How did you respond in that situation? Now, think about a time when YOU were struggling. How did you respond in that situation… to yourself? There was likely a difference. We tend to be much more compassionate with our friends while being tougher on ourselves. How can we treat ourselves with that same gentleness and care? 

In your role as a caregiver, when we put others first, we can forget to look after ourselves. The way to be a resilient caregiver is with self-compassion… treating yourself the same way you would treat a friend.

Now, what prevents us from self-compassion is the harsh critic whispering in our head. It says things like …

“You’ll never be able to do this” or

“You always mess this up.”

With self-compassion, you replace those mental judgments with thoughts a friend would comfort you with. Like …

I see you’re doing your best.”

“The people you care for are in good hands with you.”

Or… “You’re a strong person for dealing with this for so long.”

Another way to practice self-compassion is with journaling. It doesn’t have to be formal. You can even just write in your phone. However you do it, use the three parts of self-compassion to process what you’re experiencing as a caregiver. 

1) Self-Kindness

Write kind, understanding words of comfort to yourself:

It’s okay. You made a mistake. But it wasn’t the end of the world.”

2) Common Humanity

Write how the things you’re going through are connected to the larger human experience:

Everyone makes mistakes. It’s how we learn.”

3) Mindfulness

Write about how you feel (embarrassed, sad, ashamed, or frightened) in a non-judgmental way:

I got angry, overreacted, and was embarrassed afterwards.”

If you change the tone of your inner voice and journal regularly, self-compassion will make you more resilient and able to bounce back from life’s challenges.

And that’s important. Because the opportunity to be a caregiver may be one of the most fulfilling things you ever do.

But…to KEEP doing it, it’s important to be intentional about caring for yourself in the process.

People who have grit practice more than others. However, they don’t just do the same thing over and over again. Instead, they practice the areas they’re weak in. This can often be painful and hard. After all, doing something that you’re not good at can be tiring.

You can build grit by adopting a habit of daily practice, learning as you go and, and most importantly, moving through the challenging parts.

Sometimes it can even help to say out loud, “This is so frustrating because I’m challenging myself.”

'O' Stands for Outcome.

What is the specific outcome you want? This is more than the goal itself. IT’S WHAT YOU HOPE THAT GOAL GETS YOU. For example, a goal to take your medication everyday as prescribed could result in an outcome of having more freedom and less symptoms that get in the way. 

A common mistake when setting a goal is to only think about how great life will be after accomplishing it without considering what is currently holding us back.

A helpful skill is to think of the outcome you want and create a plan that will get you through any challenges that stand in your way.

‘A’ Stands for Achievable.

Think about the skills or abilities that are needed to achieve your goal. How can you make it practical and within reach? For example, reading one book per month is probably achievable. Becoming a professional NBA player may not be... because you may not have the ability or skill to achieve that goal.

You could set a goal to practice basketball one hour per day, though!

How will you know your plan is working? What are the things you (or others) could see that will let you know you are closer to achieving your goal?

Think of the way your smartphone tracks your steps and how you can compare the steps you took today to yesterday’s. You can compare week to week, or even month to month. Is it something within your control? Is it realistic? What is the time frame you are wanting to achieve this goal in? 

Rather than just thinking “I want to be healthy,” think of how you can frame it in a way that is time bound and within your control. For example, “Starting on Monday, after work, I will begin exercising 20 minutes a day, three times per week.”

A specific question you can ask to determine if your goals are achievable is to fill in the blank: I will know my plan is working if “blank.” What are the specific indicators that show you, and others, that you are closer to reaching your goal?

‘L’ Stands for Link.

Think again about the goal you want to achieve. Now think of something you really like to do that you could bundle with that goal. Perhaps it’s scrolling through social media posts, playing a game on your phone, or watching Netflix. Linking steps toward your goal with something you like is a way of doing what you want to do AND what you should be doing to achieve a specific goal.

The trick is that you must do the two things together. One shouldn’t happen without the other. Unlike doing something fun as a reward AFTER completing a task you’re not so fond of, this behavioral practice ties together something you like with completing necessary tasks.

So how does it work? If your goal is to spend an hour a day organizing and doing household chores so your weekends can be more relaxing.

You might bundle a not so fun task like laundry with watching your favorite Netflix show. Or maybe you’re trying to finish a paper and you decide to bundle this not so fun task with...a fancy coffee drink

But there’s one important catch. In order to stick to the plan and make this work, you have to have some self-control. If you reward yourself without doing what you should be doing, such as watching Netflix without doing laundry, the system will begin to fall apart.

‘S’ Stands for Steps.

Larger goals can be broken down into smaller goals.

Small steps together equal a giant leap. The trick is to break goals down into the smallest, most manageable steps you can.

Think about someone who wants to go on a long run but is out of shape. While it may be tempting to want to start on the run and simply see how far you can go, it can be more helpful to start small and track your progress.

Perhaps start by getting running shoes. Another step may be running around the block after dinner. Then you might build up to running around the block two times the next day and three times the next. This allows you to check off each goal along the way, which can keep you motivated. You can also reflect on where you’ve been by documenting your progress and sharing with friends or family.

So, to recap, here are the easy-to-remember skills in G.O.A.L.S.:

Grit

Outcome

Achievable

Link, and

Steps

And using them is how to achieve the goals that matter to you. 

Download Summary

Cuidado del cuidador

Cómo puedes cuidar de los otros a la vez que también te cuidas.

Mirar el video

Descargar Resumen

Keeping Yourself Healthy While Caring for Others

As a caregiver, you already know how difficult chronic granulomatous disease (CGD) can be for patients living with the disease. However, it’s equally important to take care of yourself. Making sure that you are eating well, exercising, getting enough sleep, and attending your own doctor appointments are just a few of the healthy choices to remember. Here are some other important suggestions to consider:

Woman on phoneWoman on phone

  • Go for a 15-minute walk at least 3 times a week
  • Take frequent breaks during the day to relax
  • Accept support with caregiving tasks from others close to you
  • Always schedule and attend your own medical appointments
  • Find a friend or professional therapist who can listen and provide additional support

Amgen By Your Side can help you discover ways to connect with others, if interested

Learn more about how to get your ACTIMMUNE® (Interferon gamma-1b) treatment

Have More Questions?

Learn how to connect with a Clinical Nurse Educator (CNE) who can help you explore enrollment options.

How to Enroll

Important Safety Information

What is ACTIMMUNE® (Interferon gamma-1b) used for?

ACTIMMUNE® is part of a drug regimen used to treat Chronic Granulomatous Disease, or CGD. CGD is a genetic disorder, usually diagnosed in childhood, that affects some cells of the immune system and the body’s ability to fight infections effectively. CGD is often treated (though not cured) with antibiotics, antifungals, and ACTIMMUNE.

ACTIMMUNE is also used to slow the worsening of severe, malignant osteopetrosis (SMO). SMO is a genetic disorder that affects normal bone formation and is usually diagnosed in the first few months after birth.

When should I not take ACTIMMUNE?

Don’t use ACTIMMUNE if you are allergic to interferon-gamma, E. coli-derived products, or any ingredients contained in the product.

What warnings should I know about ACTIMMUNE?

At high doses, ACTIMMUNE can cause (flu-like) symptoms, which may worsen some pre-existing heart conditions.

ACTIMMUNE may cause decreased mental status, walking disturbances, and dizziness, particularly at very high doses. These symptoms are usually reversible within a few days upon dose reduction or discontinuation of therapy.

Bone marrow function may be suppressed with ACTIMMUNE, and decreased production of cells important to the body may occur. This effect, which can be severe, is usually reversible when the drug is discontinued or the dose is reduced.

Taking ACTIMMUNE may cause reversible changes to your liver function, particularly in patients less than 1 year old. Your doctor should monitor your liver function every 3 months, and monthly in children under 1 year.

In rare cases, ACTIMMUNE can cause severe allergic reactions and/or rash. If you experience a serious reaction to ACTIMMUNE, discontinue it immediately and contact your doctor or seek medical help.

What should I tell my healthcare provider?

Be sure to tell your doctor about all the medications you are taking.

Tell your doctor if you:

  • are pregnant or plan to become pregnant or plan to nurse
  • have a cardiac condition such as irregular heartbeat, heart failure, or decreased blood flow to your heart
  • have a history of seizures or other neurologic disorders
  • have, or have had, reduced bone marrow function. Your doctor will monitor these cells with blood tests at the beginning of therapy and at 3-month intervals on ACTIMMUNE therapy

What are the side effects of ACTIMMUNE?

The most common side effects with ACTIMMUNE are “flu-like” symptoms such as fever, headache, chills, muscle pain, or fatigue, which may decrease in severity as treatment continues. Bedtime administration of ACTIMMUNE may help reduce some of these symptoms. Acetaminophen may be helpful in preventing fever and headache.

What other medications might interact with ACTIMMUNE?

Some drugs may interact with ACTIMMUNE to potentially increase the risk of damage to your heart or nervous system, such as certain chemotherapy drugs. Tell your doctor about all other medications you are taking.

Avoid taking ACTIMMUNE at the same time as a vaccination.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

The risk information provided here is not comprehensive. To learn more, talk about ACTIMMUNE with your healthcare provider or pharmacist. The FDA-approved product labeling can be found at http://www.ACTIMMUNE.com or 1-866-479-6742.

Important Safety Information

What is ACTIMMUNE® (Interferon gamma-1b) used for?

ACTIMMUNE® is part of a drug regimen used to treat Chronic Granulomatous Disease, or CGD. CGD is a genetic disorder, usually diagnosed in childhood, that affects some cells of the immune system and the body’s ability to fight infections effectively. CGD is often treated (though not cured) with antibiotics, antifungals, and ACTIMMUNE.

ACTIMMUNE is also used to slow the worsening of severe, malignant osteopetrosis (SMO). SMO is a genetic disorder that affects normal bone formation and is usually diagnosed in the first few months after birth.

When should I not take ACTIMMUNE?

Don’t use ACTIMMUNE if you are allergic to interferon-gamma, E. coli-derived products, or any ingredients contained in the product.

What warnings should I know about ACTIMMUNE?

At high doses, ACTIMMUNE can cause (flu-like) symptoms, which may worsen some pre-existing heart conditions.

ACTIMMUNE may cause decreased mental status, walking disturbances, and dizziness, particularly at very high doses. These symptoms are usually reversible within a few days upon dose reduction or discontinuation of therapy.

Bone marrow function may be suppressed with ACTIMMUNE, and decreased production of cells important to the body may occur. This effect, which can be severe, is usually reversible when the drug is discontinued or the dose is reduced.

Taking ACTIMMUNE may cause reversible changes to your liver function, particularly in patients less than 1 year old. Your doctor should monitor your liver function every 3 months, and monthly in children under 1 year.

In rare cases, ACTIMMUNE can cause severe allergic reactions and/or rash. If you experience a serious reaction to ACTIMMUNE, discontinue it immediately and contact your doctor or seek medical help.

What should I tell my healthcare provider?

Be sure to tell your doctor about all the medications you are taking.

Tell your doctor if you:

  • are pregnant or plan to become pregnant or plan to nurse
  • have a cardiac condition such as irregular heartbeat, heart failure, or decreased blood flow to your heart
  • have a history of seizures or other neurologic disorders
  • have, or have had, reduced bone marrow function. Your doctor will monitor these cells with blood tests at the beginning of therapy and at 3-month intervals on ACTIMMUNE therapy

What are the side effects of ACTIMMUNE?

The most common side effects with ACTIMMUNE are “flu-like” symptoms such as fever, headache, chills, muscle pain, or fatigue, which may decrease in severity as treatment continues. Bedtime administration of ACTIMMUNE may help reduce some of these symptoms. Acetaminophen may be helpful in preventing fever and headache.

What other medications might interact with ACTIMMUNE?

Some drugs may interact with ACTIMMUNE to potentially increase the risk of damage to your heart or nervous system, such as certain chemotherapy drugs. Tell your doctor about all other medications you are taking.

Avoid taking ACTIMMUNE at the same time as a vaccination.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

The risk information provided here is not comprehensive. To learn more, talk about ACTIMMUNE with your healthcare provider or pharmacist. The FDA-approved product labeling can be found at http://www.ACTIMMUNE.com or 1-866-479-6742.

Important Safety Information

What is ACTIMMUNE® (Interferon gamma-1b) used for?

ACTIMMUNE® is part of a drug regimen used to treat Chronic Granulomatous Disease, or CGD. CGD is a genetic disorder, usually diagnosed in childhood, that affects some cells of the immune system and the body’s ability to fight infections effectively. CGD is often treated (though not cured) with antibiotics, antifungals, and ACTIMMUNE.

ACTIMMUNE is also used to slow the worsening of severe, malignant osteopetrosis (SMO). SMO is a genetic disorder that affects normal bone formation and is usually diagnosed in the first few months after birth.

When should I not take ACTIMMUNE?

Don’t use ACTIMMUNE if you are allergic to interferon-gamma, E. coli-derived products, or any ingredients contained in the product.

What warnings should I know about ACTIMMUNE?

At high doses, ACTIMMUNE can cause (flu-like) symptoms, which may worsen some pre-existing heart conditions.

ACTIMMUNE may cause decreased mental status, walking disturbances, and dizziness, particularly at very high doses. These symptoms are usually reversible within a few days upon dose reduction or discontinuation of therapy.

Bone marrow function may be suppressed with ACTIMMUNE, and decreased production of cells important to the body may occur. This effect, which can be severe, is usually reversible when the drug is discontinued or the dose is reduced.

Taking ACTIMMUNE may cause reversible changes to your liver function, particularly in patients less than 1 year old. Your doctor should monitor your liver function every 3 months, and monthly in children under 1 year.

In rare cases, ACTIMMUNE can cause severe allergic reactions and/or rash. If you experience a serious reaction to ACTIMMUNE, discontinue it immediately and contact your doctor or seek medical help.

What should I tell my healthcare provider?

Be sure to tell your doctor about all the medications you are taking.

Tell your doctor if you:

  • are pregnant or plan to become pregnant or plan to nurse
  • have a cardiac condition such as irregular heartbeat, heart failure, or decreased blood flow to your heart
  • have a history of seizures or other neurologic disorders
  • have, or have had, reduced bone marrow function. Your doctor will monitor these cells with blood tests at the beginning of therapy and at 3-month intervals on ACTIMMUNE therapy

What are the side effects of ACTIMMUNE?

The most common side effects with ACTIMMUNE are “flu-like” symptoms such as fever, headache, chills, muscle pain, or fatigue, which may decrease in severity as treatment continues. Bedtime administration of ACTIMMUNE may help reduce some of these symptoms. Acetaminophen may be helpful in preventing fever and headache.

What other medications might interact with ACTIMMUNE?

Some drugs may interact with ACTIMMUNE to potentially increase the risk of damage to your heart or nervous system, such as certain chemotherapy drugs. Tell your doctor about all other medications you are taking.

Avoid taking ACTIMMUNE at the same time as a vaccination.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

The risk information provided here is not comprehensive. To learn more, talk about ACTIMMUNE with your healthcare provider or pharmacist. The FDA-approved product labeling can be found at http://www.ACTIMMUNE.com or 1-866-479-6742.

Important Safety Information

What is ACTIMMUNE® (Interferon gamma-1b) used for?

ACTIMMUNE® is part of a drug regimen used to treat Chronic Granulomatous Disease, or CGD. CGD is a genetic disorder, usually diagnosed in childhood, that affects some cells of the immune system and the body’s ability to fight infections effectively. CGD is often treated (though not cured) with antibiotics, antifungals, and ACTIMMUNE.

ACTIMMUNE is also used to slow the worsening of severe, malignant osteopetrosis (SMO). SMO is a genetic disorder that affects normal bone formation and is usually diagnosed in the first few months after birth.

When should I not take ACTIMMUNE?

Don’t use ACTIMMUNE if you are allergic to interferon-gamma, E. coli-derived products, or any ingredients contained in the product.

What warnings should I know about ACTIMMUNE?

At high doses, ACTIMMUNE can cause (flu-like) symptoms, which may worsen some pre-existing heart conditions.

ACTIMMUNE may cause decreased mental status, walking disturbances, and dizziness, particularly at very high doses. These symptoms are usually reversible within a few days upon dose reduction or discontinuation of therapy.

Bone marrow function may be suppressed with ACTIMMUNE, and decreased production of cells important to the body may occur. This effect, which can be severe, is usually reversible when the drug is discontinued or the dose is reduced.

Taking ACTIMMUNE may cause reversible changes to your liver function, particularly in patients less than 1 year old. Your doctor should monitor your liver function every 3 months, and monthly in children under 1 year.

In rare cases, ACTIMMUNE can cause severe allergic reactions and/or rash. If you experience a serious reaction to ACTIMMUNE, discontinue it immediately and contact your doctor or seek medical help.

What should I tell my healthcare provider?

Be sure to tell your doctor about all the medications you are taking.

Tell your doctor if you:

  • are pregnant or plan to become pregnant or plan to nurse
  • have a cardiac condition such as irregular heartbeat, heart failure, or decreased blood flow to your heart
  • have a history of seizures or other neurologic disorders
  • have, or have had, reduced bone marrow function. Your doctor will monitor these cells with blood tests at the beginning of therapy and at 3-month intervals on ACTIMMUNE therapy

What are the side effects of ACTIMMUNE?

The most common side effects with ACTIMMUNE are “flu-like” symptoms such as fever, headache, chills, muscle pain, or fatigue, which may decrease in severity as treatment continues. Bedtime administration of ACTIMMUNE may help reduce some of these symptoms. Acetaminophen may be helpful in preventing fever and headache.

What other medications might interact with ACTIMMUNE?

Some drugs may interact with ACTIMMUNE to potentially increase the risk of damage to your heart or nervous system, such as certain chemotherapy drugs. Tell your doctor about all other medications you are taking.

Avoid taking ACTIMMUNE at the same time as a vaccination.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

The risk information provided here is not comprehensive. To learn more, talk about ACTIMMUNE with your healthcare provider or pharmacist. The FDA-approved product labeling can be found at http://www.ACTIMMUNE.com or 1-866-479-6742.