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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

  • 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.

Cuidado del cuidador

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

Leer la Transcripción

Hoy hablaremos de cómo puede cuidar de otras personas y, al mismo tiempo, cuidar de sí mismo. Veremos de qué se trata esto.

Piense en una ocasión en la que un amigo pasó por un momento difícil. ¿Cómo respondió usted ante esa situación? Ahora piense en una ocasión en la que USTED pasó por un momento difícil. ¿Cómo respondió en esa situación... para consigo mismo? Probablemente haya respondido distinto. Solemos tener mucha más compasión con nuestros amigos y ser más severos con nosotros mismos. ¿Cómo podemos tratarnos con esa misma gentileza y cariño?

En nuestro rol de cuidadores, cuando ponemos a otras personas en primer lugar, nos olvidamos de cuidar de nosotros mismos. La manera de ser un cuidador resiliente es practicando la autocompasión... tratarse a uno mismo de la misma forma que trataría a un amigo.

Ahora, lo que nos impide practicar la autocompasión son las severas críticas que nos dan vueltas por la mente. Pensamos en frases como...
“Nunca serás capaz de hacer esto”
o “Siempre lo arruinas”.

Mediante la autocompasión, reemplazas las críticas mentales por pensamientos que un amigo utilizaría para consolarlo a usted. Por ejemplo:
“Veo que estás haciendo lo mejor posible”.
“Las personas que cuidas están en buenas manos contigo”.
O... “Eres una persona fuerte por enfrentarte a esto durante tanto tiempo”.

Otra forma de practicar la autocompasión es mediante la escritura. No tiene que ser algo formal. Incluso puede escribir en su teléfono.

Sin importar cómo lo haga, utilice las tres partes de la autocompasión para procesar lo que está experimentando como cuidador.

1) Bondad con usted mismo Escriba palabras bondadosas y comprensivas de consuelo:
“Está bien. Cometiste un error, pero no es el fin del mundo”.

2) Humanidad común Escriba cómo sus sentimientos se conectan con la experiencia humana en general:
“Todos cometemos errores. De esta forma aprendemos”.

3) Conciencia plena Escriba cómo se siente (siente vergüenza, tristeza, pena o miedo) sin juzgarse:
“Me enojé, exageré y luego sentí vergüenza”.

Si cambia el tono de su voz interna y escribe con frecuencia, la autocompasión lo hará más resiliente y podrá recuperarse de los desafíos de la vida.

Y eso es importante. Porque la oportunidad de ser un cuidador puede ser una de las actividades más gratificantes que haga.

Pero... para SEGUIR haciéndolo, es importante tener la intención de cuidar de uno mismo en el proceso.

Muchas gracias.

RULES (R.U.L.E.S.) to enhance problem solving

Learn how to help your loved ones find their own solutions

REGLAS (R.U.L.E.S.) para potenciar la resolución de problemas

Aprenda cómo ayudar a sus seres queridos a encontrar sus propias soluciones.

Your Child and Cystinosis

A guide intended to support you as you learn about your child’s condition and how to treat it.

Keeping Yourself Healthy While Caring for Others

As a caregiver, you already know how difficult cystinosis 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-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 PROCYSBI® (cysteamine bitartrate) treatment

USE and IMPORTANT SAFETY INFORMATION

What is the most important safety information I should know about PROCYSBI?

PROCYSBI can cause serious side effects, including:

  • Skin, bone, and joint problems. People treated with high doses of cysteamine bitartrate may develop abnormal changes of their skin and bones, such as stretch marks, bone injuries (such as fractures), bone deformities, and joint problems. Check your skin while taking PROCYSBI. Tell your doctor if you notice any skin changes or problems with your bones or joints. Your doctor will check you for these problems.
  • Skin rash. Skin rash is common with cysteamine bitartrate and may sometimes be severe. Tell your doctor right away if you get a skin rash. Your dose of PROCYSBI may need to be decreased until the rash goes away. If the rash is severe, your doctor may tell you to stop taking PROCYSBI. 
  • Stomach and bowel (intestinal) problems. Some people who take other medicines that contain cysteamine bitartrate may develop ulcers and bleeding in their stomach or bowel. People treated with PROCYSBI may also develop abnormal swelling and narrowing of the large bowel which must be treated promptly. Tell your doctor right away if you get abdominal pain, bloody or persistent diarrhea, bloating, nausea, vomiting, loss of appetite, vomit blood, poor weight gain or weight loss.
  • Central nervous system symptoms. Some people who take other medicines that contain cysteamine bitartrate develop seizures, depression, and become very sleepy. The medicine may affect how your brain is working (encephalopathy). Tell your doctor right away if you develop any of these symptoms.
  • Low white blood cell count and certain abnormal liver function blood tests. Your doctor should check you for these problems.
  • Benign intracranial hypertension (pseudotumor cerebri) has happened in some people who take immediate-release cysteamine bitartrate. This is a condition where there is high pressure in the fluid around the brain. Your doctor should do eye examinations to find and treat this problem early.

Tell your doctor right away if you develop any of the following symptoms while taking PROCYSBI: headache, buzzing or “whooshing” sound in the ear, dizziness, nausea, double vision, blurry vision, loss of vision, pain behind the eye, or pain with eye movement.

What is PROCYSBI?

PROCYSBI (cysteamine bitartrate) delayed-release capsules and delayed-release oral granules is a prescription medicine used to treat nephropathic cystinosis in adults and children 1 year of age and older. It is not known if PROCYSBI is safe and effective in children under 1 year of age.

Do not take PROCYSBI if you are allergic to penicillamine or cysteamine.

Before taking PROCYSBI, tell your doctor about all your medical conditions, including if you:

  • drink alcohol.
  • have a skin rash or bone problems.
  • have or have had stomach or bowel (intestinal) problems including ulcers or bleeding.
  • have a history of seizures, lack of energy, unusual sleepiness, depression, or changes in your ability to think clearly.
  • have liver or blood problems.
  • are pregnant or plan to become pregnant. It is not known if PROCYSBI will harm your unborn baby. Tell your doctor right away if you think that you are pregnant. Talk with your doctor about the benefits and risks of taking PROCYSBI during pregnancy.
  • are breastfeeding or plan to breastfeed. You should not breastfeed during treatment with PROCYSBI. Talk with your doctor about the best way to feed your baby if you take PROCYSBI.

Tell your doctor about all the medicines you take, including prescription and over the counter medicines, vitamins, dietary and herbal supplements. Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine.

What should I avoid while taking PROCYSBI?

  • Do not drive or operate machinery until you know how PROCYSBI affects you. PROCYSBI can make you sleepy or less alert than normal.
  • Do not drink alcohol if you take PROCYSBI. Drinking alcohol while taking PROCYSBI may change how PROCYSBI works and may cause an increase in the amount of PROCYSBI in your blood that may cause serious side effects.

What are the possible side effects of PROCYSBI?

PROCYSBI can cause serious side effects, including:

  • See "What is the most important information I should know about PROCYSBI?"

The most common side effects of PROCYSBI include: vomiting, nausea, stomach (abdominal) pain, pink eye, diarrhea, cold, tiredness, flu, headache, problems with body salts or electrolytes, infection of ear, nose or throat, joint pain.

These are not all the possible side effects of PROCYSBI. Call your doctor for medical information about side effects. You may report side effects to FDA at 1-800-FDA-1088.

For additional important safety information, click here for the Patient Package Insert and discuss with your doctor.  

USE and IMPORTANT SAFETY INFORMATION

What is the most important safety information I should know about PROCYSBI?

PROCYSBI can cause serious side effects, including:

  • Skin, bone, and joint problems. People treated with high doses of cysteamine bitartrate may develop abnormal changes of their skin and bones, such as stretch marks, bone injuries (such as fractures), bone deformities, and joint problems. Check your skin while taking PROCYSBI. Tell your doctor if you notice any skin changes or problems with your bones or joints. Your doctor will check you for these problems.
  • Skin rash. Skin rash is common with cysteamine bitartrate and may sometimes be severe. Tell your doctor right away if you get a skin rash. Your dose of PROCYSBI may need to be decreased until the rash goes away. If the rash is severe, your doctor may tell you to stop taking PROCYSBI. 
  • Stomach and bowel (intestinal) problems. Some people who take other medicines that contain cysteamine bitartrate may develop ulcers and bleeding in their stomach or bowel. People treated with PROCYSBI may also develop abnormal swelling and narrowing of the large bowel which must be treated promptly. Tell your doctor right away if you get abdominal pain, bloody or persistent diarrhea, bloating, nausea, vomiting, loss of appetite, vomit blood, poor weight gain or weight loss.
  • Central nervous system symptoms. Some people who take other medicines that contain cysteamine bitartrate develop seizures, depression, and become very sleepy. The medicine may affect how your brain is working (encephalopathy). Tell your doctor right away if you develop any of these symptoms.
  • Low white blood cell count and certain abnormal liver function blood tests. Your doctor should check you for these problems.
  • Benign intracranial hypertension (pseudotumor cerebri) has happened in some people who take immediate-release cysteamine bitartrate. This is a condition where there is high pressure in the fluid around the brain. Your doctor should do eye examinations to find and treat this problem early.

Tell your doctor right away if you develop any of the following symptoms while taking PROCYSBI: headache, buzzing or “whooshing” sound in the ear, dizziness, nausea, double vision, blurry vision, loss of vision, pain behind the eye, or pain with eye movement.

What is PROCYSBI?

PROCYSBI (cysteamine bitartrate) delayed-release capsules and delayed-release oral granules is a prescription medicine used to treat nephropathic cystinosis in adults and children 1 year of age and older. It is not known if PROCYSBI is safe and effective in children under 1 year of age.

Do not take PROCYSBI if you are allergic to penicillamine or cysteamine.

Before taking PROCYSBI, tell your doctor about all your medical conditions, including if you:

  • drink alcohol.
  • have a skin rash or bone problems.
  • have or have had stomach or bowel (intestinal) problems including ulcers or bleeding.
  • have a history of seizures, lack of energy, unusual sleepiness, depression, or changes in your ability to think clearly.
  • have liver or blood problems.
  • are pregnant or plan to become pregnant. It is not known if PROCYSBI will harm your unborn baby. Tell your doctor right away if you think that you are pregnant. Talk with your doctor about the benefits and risks of taking PROCYSBI during pregnancy.
  • are breastfeeding or plan to breastfeed. You should not breastfeed during treatment with PROCYSBI. Talk with your doctor about the best way to feed your baby if you take PROCYSBI.

Tell your doctor about all the medicines you take, including prescription and over the counter medicines, vitamins, dietary and herbal supplements. Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine.

What should I avoid while taking PROCYSBI?

  • Do not drive or operate machinery until you know how PROCYSBI affects you. PROCYSBI can make you sleepy or less alert than normal.
  • Do not drink alcohol if you take PROCYSBI. Drinking alcohol while taking PROCYSBI may change how PROCYSBI works and may cause an increase in the amount of PROCYSBI in your blood that may cause serious side effects.

What are the possible side effects of PROCYSBI?

PROCYSBI can cause serious side effects, including:

  • See "What is the most important information I should know about PROCYSBI?"

The most common side effects of PROCYSBI include: vomiting, nausea, stomach (abdominal) pain, pink eye, diarrhea, cold, tiredness, flu, headache, problems with body salts or electrolytes, infection of ear, nose or throat, joint pain.

These are not all the possible side effects of PROCYSBI. Call your doctor for medical information about side effects. You may report side effects to FDA at 1-800-FDA-1088.

For additional important safety information, click here for the Patient Package Insert and discuss with your doctor.