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
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    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. 

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.

Keeping Yourself Healthy While Caring for Others

As a caregiver, you already know how difficult urea cycle disorder (UCD) 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

INDICATION and IMPORTANT SAFETY INFORMATION

INDICATION

PROCYSBI (cysteamine bitartrate) delayed-release capsules and delayed-release oral granules is a cystine-depleting agent indicated for the treatment of nephropathic cystinosis in adults and pediatric patients 1 year of age and older.

IMPORTANT SAFETY INFORMATION

CONTRAINDICATIONS

  • Patients with serious hypersensitivity reaction, including anaphylaxis to penicillamine or cysteamine.

WARNINGS AND PRECAUTIONS

  • Ehlers-Danlos-like Syndrome: Skin and bone lesions that resemble clinical findings for Ehlers-Danlos-like syndrome have been reported in patients treated with high doses of immediate-release cysteamine bitartrate or other cysteamine salts. Monitor patients for development of skin or bone lesions and reduce PROCYSBI dosing if patients develop these lesions.
  • Skin Rash: Severe skin rashes such as erythema multiforme bullosa or toxic epidermal necrolysis have been reported in patients receiving immediate-release cysteamine bitartrate. Discontinue use if severe skin rash occurs.
  • Gastrointestinal (GI) Ulcers and Bleeding: GI ulceration and bleeding have been reported in patients receiving immediate-release cysteamine bitartrate. Monitor for GI symptoms and consider decreasing the dose if severe symptoms occur.
  • Fibrosing Colonopathy: Fibrosing colonopathy has been reported with postmarketing use of PROCYSBI. Evaluate patients with severe, persistent, and/or worsening abdominal symptoms for fibrosing colonopathy. If the diagnosis is confirmed, permanently discontinue PROCYSBI and switch to immediate-release cysteamine bitartrate capsules.
  • Central Nervous System (CNS) Symptoms: CNS symptoms such as seizures, lethargy, somnolence, depression, and encephalopathy have been associated with immediate-release cysteamine. Monitor for CNS symptoms; interrupt or reduce the dose for severe symptoms or those that persist or progress.
  • Leukopenia and/or Elevated Alkaline Phosphatase Levels: Cysteamine has been associated with reversible leukopenia and elevated alkaline phosphatase levels. Monitor white blood cell counts and alkaline phosphatase levels; decrease or discontinue the dose until values revert to normal.
  • Benign lntracranial Hypertension: Benign intracranial hypertension (pseudotumor cerebri; PTC) and/or papilledema has been reported in patients receiving immediate-release cysteamine bitartrate treatment. Monitor for signs and symptoms of PTC; interrupt or reduce the dose for signs/symptoms that persist, or discontinue if diagnosis is confirmed.

ADVERSE REACTIONS

The most common adverse reactions reported in PROCYSBI clinical trials (≥ 5%) were:

 

  • Patients 2 years of age and older previously treated with cysteamine: vomiting, nausea, abdominal pain, headache, conjunctivitis, influenza, gastroenteritis, nasopharyngitis, dehydration, ear infection, upper respiratory tract infection, fatigue, arthralgia, cough, and pain in extremity.
  • Patients 1 year of age and older naïve to cysteamine treatment: vomiting, gastroenteritis/viral gastroenteritis, diarrhea, breath odor, nausea, electrolyte imbalance, headache.

DRUG INTERACTIONS

  • Drugs that increase gastric pH may alter the pharmacokinetics of cysteamine due to the premature release of cysteamine from PROCYSBI and increase WBC cystine concentration. Monitor WBC cystine concentration with concomitant use.
  • Consumption of alcohol with PROCYSBI may increase the rate of cysteamine release and/or adversely alter the pharmacokinetic properties, as well as the effectiveness and safety of PROCYSBI.
  • PROCYSBI can be administered with electrolyte (except bicarbonate) and mineral replacements necessary for management of Fanconi Syndrome as well as vitamin D and thyroid hormone.

USE IN SPECIFIC POPULATIONS

  • Lactation: Because of the potential risk for serious adverse reactions in breastfed children from cysteamine, breastfeeding is not recommended during treatment with PROCYSBI.

Please see Full Prescribing Information.

INDICATION and IMPORTANT SAFETY INFORMATION

INDICATION

PROCYSBI (cysteamine bitartrate) delayed-release capsules and delayed-release oral granules is a cystine-depleting agent indicated for the treatment of nephropathic cystinosis in adults and pediatric patients 1 year of age and older.

IMPORTANT SAFETY INFORMATION

CONTRAINDICATIONS

  • Patients with serious hypersensitivity reaction, including anaphylaxis to penicillamine or cysteamine.

WARNINGS AND PRECAUTIONS

  • Ehlers-Danlos-like Syndrome: Skin and bone lesions that resemble clinical findings for Ehlers-Danlos-like syndrome have been reported in patients treated with high doses of immediate-release cysteamine bitartrate or other cysteamine salts. Monitor patients for development of skin or bone lesions and reduce PROCYSBI dosing if patients develop these lesions.
  • Skin Rash: Severe skin rashes such as erythema multiforme bullosa or toxic epidermal necrolysis have been reported in patients receiving immediate-release cysteamine bitartrate. Discontinue use if severe skin rash occurs.
  • Gastrointestinal (GI) Ulcers and Bleeding: GI ulceration and bleeding have been reported in patients receiving immediate-release cysteamine bitartrate. Monitor for GI symptoms and consider decreasing the dose if severe symptoms occur.
  • Fibrosing Colonopathy: Fibrosing colonopathy has been reported with postmarketing use of PROCYSBI. Evaluate patients with severe, persistent, and/or worsening abdominal symptoms for fibrosing colonopathy. If the diagnosis is confirmed, permanently discontinue PROCYSBI and switch to immediate-release cysteamine bitartrate capsules.
  • Central Nervous System (CNS) Symptoms: CNS symptoms such as seizures, lethargy, somnolence, depression, and encephalopathy have been associated with immediate-release cysteamine. Monitor for CNS symptoms; interrupt or reduce the dose for severe symptoms or those that persist or progress.
  • Leukopenia and/or Elevated Alkaline Phosphatase Levels: Cysteamine has been associated with reversible leukopenia and elevated alkaline phosphatase levels. Monitor white blood cell counts and alkaline phosphatase levels; decrease or discontinue the dose until values revert to normal.
  • Benign lntracranial Hypertension: Benign intracranial hypertension (pseudotumor cerebri; PTC) and/or papilledema has been reported in patients receiving immediate-release cysteamine bitartrate treatment. Monitor for signs and symptoms of PTC; interrupt or reduce the dose for signs/symptoms that persist, or discontinue if diagnosis is confirmed.

ADVERSE REACTIONS

The most common adverse reactions reported in PROCYSBI clinical trials (≥ 5%) were:

  • Patients 2 years of age and older previously treated with cysteamine: vomiting, nausea, abdominal pain, headache, conjunctivitis, influenza, gastroenteritis, nasopharyngitis, dehydration, ear infection, upper respiratory tract infection, fatigue, arthralgia, cough, and pain in extremity.
  • Patients 1 year of age and older naïve to cysteamine treatment: vomiting, gastroenteritis/viral gastroenteritis, diarrhea, breath odor, nausea, electrolyte imbalance, headache.

DRUG INTERACTIONS

  • Drugs that increase gastric pH may alter the pharmacokinetics of cysteamine due to the premature release of cysteamine from PROCYSBI and increase WBC cystine concentration. Monitor WBC cystine concentration with concomitant use.
  • Consumption of alcohol with PROCYSBI may increase the rate of cysteamine release and/or adversely alter the pharmacokinetic properties, as well as the effectiveness and safety of PROCYSBI.
  • PROCYSBI can be administered with electrolyte (except bicarbonate) and mineral replacements necessary for management of Fanconi Syndrome as well as vitamin D and thyroid hormone.

USE IN SPECIFIC POPULATIONS

  • Lactation: Because of the potential risk for serious adverse reactions in breastfed children from cysteamine, breastfeeding is not recommended during treatment with PROCYSBI.

Please see Full Prescribing Information.