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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.

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

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

Learn more about how to get your BUPHENYL® (sodium phenylbutyrate) Tablets or Powder treatment

USE and IMPORTANT SAFETY INFORMATION

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

BUPHENYL may cause serious side effects, including:

Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of BUPHENYL, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking BUPHENYL:

  • sleepiness
  • weakness
  • lightheadedness
  • problems with memory
  • worsening of numbness, tingling, or burning in your hands or feet
  • change in taste
  • problems with hearing
  • confusion
  • headache

What is BUPHENYL?

  • BUPHENYL® (sodium phenylbutyrate) Tablets is a prescription medicine that can be taken by mouth and BUPHENYL® (sodium phenylbutyrate) Powder is a prescription medicine that can be taken by mouth or feeding tube for the long-term management of high blood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD).
  • BUPHENYL only treats high blood levels of ammonia in patients with carbamylphosphate synthetase (CPS), ornithine transcarbamylase (OTC) and argininosuccinic acid synthetase (AS) deficiencies.
  • BUPHENYL can be used in infants up to 28 days old who have a complete enzyme deficiency, and in patients 1 month of age and older who have a partial enzyme deficiency and have a history of brain damage from high blood levels of ammonia.
  • BUPHENYL must be used along with a low-protein diet and in some cases, dietary supplements.
  • BUPHENYL is not used to treat acute (severe) hyperammonemia, which is a medical emergency.

Do not take BUPHENYL if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you experience an allergic reaction while taking BUPHENYL.

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

  • have heart failure or decreased kidney function, which may lead to retention of the sodium content of BUPHENYL with potentially serious consequences, such as worsening heart failure, high blood pressure, and swelling.
  • are pregnant or plan to become pregnant. It is not known if BUPHENYL will harm your unborn baby.
  • are breastfeeding or plan to breastfeed. It is not known if BUPHENYL passes into your breast milk. Breastfeeding is not recommended during treatment with BUPHENYL. Talk to your doctor about the best way to feed your baby if you take BUPHENYL.

What are possible side effects of BUPHENYL?

BUPHENYL may cause serious side effects, including:

  • See “What is the most important information I should know about BUPHENYL?”

The most common side effects of BUPHENYL include:

  • decreased appetite
  • body odor
  • bad taste
  • absent or irregular periods in women

These are not all of the possible side effects of BUPHENYL. Call your doctor for medical advice 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 BUPHENYL?

BUPHENYL may cause serious side effects, including:

Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of BUPHENYL, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking BUPHENYL:

  • sleepiness
  • weakness
  • lightheadedness
  • problems with memory
  • worsening of numbness, tingling, or burning in your hands or feet
  • change in taste
  • problems with hearing
  • confusion
  • headache

What is BUPHENYL?

  • BUPHENYL® (sodium phenylbutyrate) Tablets is a prescription medicine that can be taken by mouth and BUPHENYL® (sodium phenylbutyrate) Powder is a prescription medicine that can be taken by mouth or feeding tube for the long-term management of high blood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD).
  • BUPHENYL only treats high blood levels of ammonia in patients with carbamylphosphate synthetase (CPS), ornithine transcarbamylase (OTC) and argininosuccinic acid synthetase (AS) deficiencies.
  • BUPHENYL can be used in infants up to 28 days old who have a complete enzyme deficiency, and in patients 1 month of age and older who have a partial enzyme deficiency and have a history of brain damage from high blood levels of ammonia.
  • BUPHENYL must be used along with a low-protein diet and in some cases, dietary supplements.
  • BUPHENYL is not used to treat acute (severe) hyperammonemia, which is a medical emergency.

Do not take BUPHENYL if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you experience an allergic reaction while taking BUPHENYL.

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

  • have heart failure or decreased kidney function, which may lead to retention of the sodium content of BUPHENYL with potentially serious consequences, such as worsening heart failure, high blood pressure, and swelling.
  • are pregnant or plan to become pregnant. It is not known if BUPHENYL will harm your unborn baby.
  • are breastfeeding or plan to breastfeed. It is not known if BUPHENYL passes into your breast milk. Breastfeeding is not recommended during treatment with BUPHENYL. Talk to your doctor about the best way to feed your baby if you take BUPHENYL.

What are possible side effects of BUPHENYL?

BUPHENYL may cause serious side effects, including:

  • See “What is the most important information I should know about BUPHENYL?”

The most common side effects of BUPHENYL include:

  • decreased appetite
  • body odor
  • bad taste
  • absent or irregular periods in women

These are not all of the possible side effects of BUPHENYL. Call your doctor for medical advice 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.