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 you, as a caregiver, do as much for yourself as you are doing for others.

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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, it can be easy to forget to look after yourself as you put others needs first. 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.

Keeping Yourself Healthy While Caring for Others

As a caregiver, you already know how difficult it can be for patients living with a rare disease. However, it’s equally important not to lose sight of your own self-care. 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
  • Make sure to talk with your doctor as needed

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.

Read Transcript

R.U.L.E.S. for Empowering Problem-Solving

When someone you’re caring for shares a problem they’re having it’s tempting to try and solve it. We want to make the person we care for feel better. But when you tell them what they “should” do it can kick off a frustrating cycle. They may respond by pointing out why your solution won’t work. So, you offer another one. And then they say that won’t work either.

In this cycle, your loved one is becoming frustrated because they feel like they’re not being heard or understood. And you are becoming frustrated because your solutions are not being well received.

Here’s what can help break this cycle. People are more likely to be successful when they come up with and commit to their own solutions. Even if a loved one seems stuck about a challenge they’re struggling with, they still have ideas of their own that can be tapped into. By acting on five RULES you can help them problem solve their own solutions that work best for them.

The first rule is R: Resist the need to fix. The desire to fix is normal. But don’t race ahead to give advice, agree or disagree, or even ask a lot of questions. In fact, many people think they’re being a good listener by asking questions. But asking questions too early can actually steer the person away from what they are trying to tell you. Instead, hold back… even if you think you already have the perfect solution.

The next rule is U: Understand the problem your loved one is trying to solve.

Understanding comes from good listening and says “You are important to me.” Think about listening to understand like being a trampoline. Let the person speaking bounce ideas off of you.

With listening to understand give your full attention. Don’t do anything else while you’re listening and avoid thinking about what you are going to say next. Be curious. Focus on trying to find out their perspective. Don’t agree or disagree. Listen actively. Say what you heard. This is not repeating exactly what they said. It’s offering your understanding of what the person might mean.

The next rule is L: Learn about their ideas for how to solve the problem. Ask open-ended questions that encourage thinking of possible solutions like…

  • “There are probably a lot of good solutions.”
  • “Which ones can you think of?”
  • “What information would help you make a decision?”
  • or, “What do you think you should do at this point?”

As they’re thinking about options, hold off on sharing judgments. But if you have a concern that needs be shared, a better response is saying something like “I’m not sure what you’ll think about this, but one concern I have about that idea is…”

In this way, you’re sharing your thoughts while you’re understanding they may have a different opinion.

When you believe it’s time to move forward with a decision, ask...

“Is this the solution you want to try?” or “Of the solutions we’ve talked about, it seems like this is the one you’re most interested in.” If there’s agreement, it’s a good signal to move to…

The next rule, E: Empower. Empowering involves helping the person develop a step-by-step plan of how they will carry out their solution and when they will do it.

You might ask:

  • “Where will you begin?”
  • “How could you make this happen?”
  • or “What needs to happen next?”

Once a plan is developed, help lock it in with action-focused questions, like…

  • “Are you prepared to do this?”
  • “Will you do this?”
  • or “Do you intend to do this today?”

Their “yes” leads to the final rule, S: Support.

This is about specific ways you can help. But don’t assume you already know how. Ask…

  • “What are ways I can help?”
  • “How might I support you in this?”
  • or “What ideas do you have for how I can be helpful as you begin?”

If they don’t have answers, you might say:

  • “One way that might be helpful is (blank). I wonder what you think about that?”
  • or “What would you think about me helping by doing (blank)?”

And remember, part of showing support is celebrating progress along the way.

This can build confidence and help the person stay on track.

So, the next time you feel the need to fix bubbling up inside of you – remember the RULES – to help empower your loved one to find their own solutions that work best for them.

Leer la Transcripción

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

Cuando alguien que usted cuida le comparte un problema que está teniendo, es tentador intentar resolverlo. Queremos que la persona que nos importa se sienta mejor. Pero cuando le dice lo que “debería” hacer, puede comenzar un ciclo de frustración. Es posible que la respuesta sea una explicación de por qué su solución no funcionará. Entonces, usted ofrece otra. Y luego le responde que eso tampoco funcionará.

En este ciclo, su ser querido se frustra porque siente que no lo escuchan ni lo comprenden. Y usted se frustra porque sus soluciones no son bien recibidas.

Hacer lo siguiente lo que puede ayudar a romper este ciclo. Las personas tienen más probabilidades de tener éxito cuando desarrollan sus propias soluciones y se comprometen con ellas. Incluso si un ser querido parece estar estancado en un desafío con el que lucha, todavía tiene ideas propias de las que puede sacar provecho. Al seguir cinco REGLAS, puede ayudarlo a resolver problemas con soluciones propias que funcionen mejor para él.

La primera regla es R: Resista (Resist) la necesidad de solucionar. El deseo de solucionar es normal. Pero no se apresure a dar consejos, estar de acuerdo o en desacuerdo, ni siquiera haga muchas preguntas. De hecho, muchas personas piensan que saben escuchar porque hacen preguntas. Pero hacer preguntas demasiado pronto puede en realidad desviar a la persona de lo que está tratando de decirle. En lugar de eso, conténgase, incluso si cree que ya tiene la solución perfecta.

La siguiente regla es U: Comprenda (Understand) el problema que su ser querido trata de resolver.

La comprensión proviene de una buena escucha y comunica que la otra persona es importante para uno mismo. Piense en escuchar para entender como si fuera un trampolín. Deje que la persona que habla haga rebotar sus ideas sobre usted.

Al escuchar para comprender, preste toda su atención. No haga nada más mientras escucha y evite pensar en lo que va a decir a continuación. Sea curioso. Concéntrese en intentar descubrir la perspectiva del otro. No esté de acuerdo ni en desacuerdo. Escuche de manera activa. Diga lo que escuchó. Esto no significa repetir exactamente lo que dijeron. Es ofrecer su comprensión de lo que la persona podría querer decir.

La siguiente regla es L: Conozca (Learn) las ideas de la otra persona con respecto a cómo resolver el problema. Haga preguntas abiertas que incentiven a pensar en posibles soluciones, como las siguientes:

  • “Probablemente haya muchas soluciones buenas ”.
  • “¿Cuáles se te ocurren?”.
  • “¿Qué información te ayudaría a tomar una decisión?”.
  • O “¿Qué crees que deberías hacer en este momento?”.

Mientras piensan en opciones, no comparta sus opiniones. Pero si tiene una inquietud que necesita compartir, una mejor respuesta es decir algo como “No estoy seguro de qué te parecerá lo que pienso, pero una preocupación que tengo sobre esa idea es...”.

De esta manera, usted comparte sus pensamientos y comprende que es posible que la otra persona tenga una opinión diferente.

Cuando crea que es hora de avanzar con una decisión, pregunte:

“¿Esta es la solución que quieres probar?” o “de las soluciones de las que hablamos, parece que esta es la que más te interesa”. Si llegan a un acuerdo, es una buena señal para pasar a...

La siguiente regla, E: Empodere (Empower). Empoderar implica ayudar a la persona a desarrollar un plan paso a paso de cómo llevará a cabo su solución y cuándo lo hará.

Podría preguntar:

  • “¿Por dónde empezarás?”.
  • “¿Cómo podrías hacer que esto suceda?”.
  • O “¿Qué debe pasar a continuación?”.

Una vez que el plan esté desarrollado, ayude a fijarlo con preguntas centradas en la acción, como las siguientes:

  • “¿Estás preparado para hacer esto?”.
  • “¿Harás esto?”.
  • U “¿Hoy tienes intención de hacer esto?”.

Si la otra persona responde “sí”, eso conduce a la regla final, S: Apoye (Support).

Se trata de formas específicas en las que puede ayudar. Pero no dé por sentado que ya sabe cómo hacerlo. Pregunte:

  • “¿De qué maneras puedo ayudar?”.
  • “¿Cómo podría apoyarte en esto?”.
  • O “¿Qué ideas tienes sobre cómo puedo ayudarte a medida que empiezas?”.

Si la otra persona no tiene respuestas, podría decir:

  • “Una forma que podría resultar útil es (complete). Me pregunto qué te parece eso”.
  • O “¿Qué pensarías si yo te ayudara haciendo (complete)?”.

Y recuerde, parte de mostrar apoyo es celebrar el progreso a lo largo del camino.
Esto puede generar confianza y ayudar a la persona a mantener el rumbo.

Por lo tanto, la próxima vez que sienta que la necesidad de solucionar empieza a emerger dentro de usted, recuerde las REGLAS. De esta manera, empoderará a su ser querido para que encuentre sus propias soluciones que funcionen mejor para él.

Indication

BKEMV™ (eculizumab-aeeb) is indicated for:

  • The treatment of patients with paroxysmal nocturnal hemoglobinuria (PNH) to reduce hemolysis.
  • The treatment of patients with atypical hemolytic uremic syndrome (aHUS) to inhibit complement-mediated thrombotic microangiopathy.

Limitation of Use: BKEMV is not indicated for the treatment of patients with Shiga toxin E. coli related hemolytic uremic syndrome (STEC-HUS).

Important Safety Information

WARNING: SERIOUS MENINGOCOCCAL INFECTIONS

Eculizumab products, complement inhibitors, increase the risk of serious infections caused by Neisseria meningitidis. Life-threatening and fatal meningococcal infections have occurred in patients treated with complement inhibitors. These infections may become rapidly life-threatening or fatal if not recognized and treated early.

Complete or update vaccination for meningococcal bacteria (for serogroups A, C, W, Y, and B) at least 2 weeks prior to the first dose of BKEMV, unless the risks of delaying therapy with BKEMV outweigh the risk of developing a serious infection. Comply with the most current Advisory Committee on Immunization Practices (ACIP) recommendations for vaccinations against meningococcal bacteria in patients receiving a complement inhibitor. See Warnings and Precautions for additional guidance on the management of the risk of serious infections caused by meningococcal bacteria.

Patients receiving eculizumab products are at increased risk for invasive disease caused by Neisseria meningitidis, even if they develop antibodies following vaccination. Monitor patients for early signs and symptoms of serious meningococcal infections and evaluate immediately if infection is suspected.

Because of the risk of serious meningococcal infections, BKEMV is available only through a restricted program under a Risk Evaluation and Mitigation Strategy (REMS) called BKEMV REMS.

Contraindications: BKEMV is contraindicated for initiation in patients with unresolved serious Neisseria meningitidis infection.

Other Infections

Use caution when administering BKEMV to patients with any other systemic infection. Serious infections with Neisseria species (other than Neisseria meningitidis), including disseminated gonococcal infections, have been reported.

Patients may have increased susceptibility to infections, especially with encapsulated bacteria, such as infections with Neisseria meningitidis but also Streptococcus pneumoniae, Haemophilus influenzae, and to a lesser extent, Neisseria gonorrhoeae. Additionally, Aspergillus infections have occurred in immunocompromised and neutropenic patients. Children treated with eculizumab products may be at increased risk of developing serious infections due to Streptococcus pneumoniae and Haemophilus influenzae type b (Hib). Administer vaccinations for the prevention of Streptococcus pneumoniae and Haemophilus influenzae type b (Hib) infections according to ACIP recommendations. Patients receiving eculizumab products are at increased risk for infections due to these organisms, even if they develop antibodies following vaccination.

Monitoring Disease Manifestations after BKEMV Discontinuation

Treatment Discontinuation for PNH

Monitor patients after discontinuing BKEMV for at least 8 weeks to detect hemolysis.

Treatment Discontinuation for aHUS

After discontinuing BKEMV, monitor patients with aHUS for signs and symptoms of thrombotic microangiopathy (TMA) complications for at least 12 weeks. Clinical signs and symptoms of TMA include changes in mental status, seizures, angina, dyspnea, or thrombosis.

In addition, the following changes in laboratory parameters may identify a TMA complication: occurrence of two, or repeated measurement of any one of the following: a decrease in platelet count by 25% or more compared to baseline or the peak platelet count during BKEMV treatment; an increase in serum creatinine by 25% or more compared to baseline or nadir during BKEMV treatment; or, an increase in serum LDH by 25% or more over baseline or nadir during BKEMV treatment.

If TMA complications occur after BKEMV discontinuation, consider reinstitution of BKEMV treatment, plasma therapy, or appropriate organ-specific supportive measures.

Thrombosis Prevention and Management

The effect of withdrawal of anticoagulant therapy during eculizumab products treatment has not been established. Therefore, treatment with eculizumab products should not alter anticoagulant management.

Infusion-Related Reactions

Administration of eculizumab products may result in infusion-related reactions, including anaphylaxis or other hypersensitivity reactions. In clinical trials, no patients experienced an infusion-related reaction which required discontinuation of eculizumab. Interrupt BKEMV infusion and institute appropriate supportive measures if signs of cardiovascular instability or respiratory compromise occur.

Adverse Reactions

The most frequently reported adverse reactions in the PNH randomized trial (≥10% overall and greater than placebo) are: headache, nasopharyngitis, back pain, and nausea. The most frequently reported adverse reactions in aHUS single arm prospective trials (≥20%) are: headache, diarrhea, hypertension, upper respiratory infection, abdominal pain, vomiting, nasopharyngitis, anemia, cough, peripheral edema, nausea, urinary tract infections, pyrexia.

Indication

BKEMV™ (eculizumab-aeeb) is indicated for:

  • The treatment of patients with paroxysmal nocturnal hemoglobinuria (PNH) to reduce hemolysis.
  • The treatment of patients with atypical hemolytic uremic syndrome (aHUS) to inhibit complement-mediated thrombotic microangiopathy.

Limitation of Use: BKEMV is not indicated for the treatment of patients with Shiga toxin E. coli related hemolytic uremic syndrome (STEC-HUS).

Important Safety Information

WARNING: SERIOUS MENINGOCOCCAL INFECTIONS

Eculizumab products, complement inhibitors, increase the risk of serious infections caused by Neisseria meningitidis. Life-threatening and fatal meningococcal infections have occurred in patients treated with complement inhibitors. These infections may become rapidly life-threatening or fatal if not recognized and treated early.

Complete or update vaccination for meningococcal bacteria (for serogroups A, C, W, Y, and B) at least 2 weeks prior to the first dose of BKEMV, unless the risks of delaying therapy with BKEMV outweigh the risk of developing a serious infection. Comply with the most current Advisory Committee on Immunization Practices (ACIP) recommendations for vaccinations against meningococcal bacteria in patients receiving a complement inhibitor. See Warnings and Precautions for additional guidance on the management of the risk of serious infections caused by meningococcal bacteria.

Patients receiving eculizumab products are at increased risk for invasive disease caused by Neisseria meningitidis, even if they develop antibodies following vaccination. Monitor patients for early signs and symptoms of serious meningococcal infections and evaluate immediately if infection is suspected.

Because of the risk of serious meningococcal infections, BKEMV is available only through a restricted program under a Risk Evaluation and Mitigation Strategy (REMS) called BKEMV REMS.

Contraindications: BKEMV is contraindicated for initiation in patients with unresolved serious Neisseria meningitidis infection.

Other Infections

Use caution when administering BKEMV to patients with any other systemic infection. Serious infections with Neisseria species (other than Neisseria meningitidis), including disseminated gonococcal infections, have been reported.

Patients may have increased susceptibility to infections, especially with encapsulated bacteria, such as infections with Neisseria meningitidis but also Streptococcus pneumoniae, Haemophilus influenzae, and to a lesser extent, Neisseria gonorrhoeae. Additionally, Aspergillus infections have occurred in immunocompromised and neutropenic patients. Children treated with eculizumab products may be at increased risk of developing serious infections due to Streptococcus pneumoniae and Haemophilus influenzae type b (Hib). Administer vaccinations for the prevention of Streptococcus pneumoniae and Haemophilus influenzae type b (Hib) infections according to ACIP recommendations. Patients receiving eculizumab products are at increased risk for infections due to these organisms, even if they develop antibodies following vaccination.

Monitoring Disease Manifestations after BKEMV Discontinuation

Treatment Discontinuation for PNH

Monitor patients after discontinuing BKEMV for at least 8 weeks to detect hemolysis.

Treatment Discontinuation for aHUS

After discontinuing BKEMV, monitor patients with aHUS for signs and symptoms of thrombotic microangiopathy (TMA) complications for at least 12 weeks. Clinical signs and symptoms of TMA include changes in mental status, seizures, angina, dyspnea, or thrombosis.

In addition, the following changes in laboratory parameters may identify a TMA complication: occurrence of two, or repeated measurement of any one of the following: a decrease in platelet count by 25% or more compared to baseline or the peak platelet count during BKEMV treatment; an increase in serum creatinine by 25% or more compared to baseline or nadir during BKEMV treatment; or, an increase in serum LDH by 25% or more over baseline or nadir during BKEMV treatment.

If TMA complications occur after BKEMV discontinuation, consider reinstitution of BKEMV treatment, plasma therapy, or appropriate organ-specific supportive measures.

Thrombosis Prevention and Management

The effect of withdrawal of anticoagulant therapy during eculizumab products treatment has not been established. Therefore, treatment with eculizumab products should not alter anticoagulant management.

Infusion-Related Reactions

Administration of eculizumab products may result in infusion-related reactions, including anaphylaxis or other hypersensitivity reactions. In clinical trials, no patients experienced an infusion-related reaction which required discontinuation of eculizumab. Interrupt BKEMV infusion and institute appropriate supportive measures if signs of cardiovascular instability or respiratory compromise occur.

Adverse Reactions

The most frequently reported adverse reactions in the PNH randomized trial (≥10% overall and greater than placebo) are: headache, nasopharyngitis, back pain, and nausea. The most frequently reported adverse reactions in aHUS single arm prospective trials (≥20%) are: headache, diarrhea, hypertension, upper respiratory infection, abdominal pain, vomiting, nasopharyngitis, anemia, cough, peripheral edema, nausea, urinary tract infections, pyrexia.