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The Caregiver Role: Tips and Tricks to Avoid Burnout

Whether it comes out of nowhere and flips your world upside down or has become an increasingly present role, being a caregiver is challenging. Most often, you already have a long list of roles – parent, spouse, employee, business owner, friend – and adding one more job to the extensive list can be overwhelming. While taking on a caregiver role can be taxing, know you are doing an essential job. Our tips for caregivers will help ensure you don’t burn out while caring for your loved one.

Don’t go it alone

Being a caregiver can be a lonely path without a support team behind you. Just as your loved one needs to lean on you, you need to lean on others around you. If you spread yourself too thin, you’re prone to burnout. Rely on the support available – friends, family, community groups – many resources can make your life easier. A support group for patients or caregivers is a great place to start. You’ll meet people going through something similar who may have suggestions for further resources in your area. Finally, be sure to share your experiences. Whether it’s a friend, family member or therapist, venting and talking through your feelings will help you feel less alone. The more people on your side, the better!

Embrace schedules & routines

Do everything possible to reduce your mental load and make life easy. This is a time for shortcuts. Things like scheduling apps and reminders for mediations and appointments are helpful. It’s also a good idea to create a medical binder that includes medication lists, treatment plans, and doctor’s numbers so essential info is in one place and easy to access. If you have anyone else who comes in to help, a list of routines, medication timing, etc., will make it easy to give directions. Try meal planning and prepping in advance to have healthy options on overwhelming days. And be sure to schedule time to care for yourself. Whether it’s an exercise routine or time out of the house, you’re more apt to prioritize self-care if you make it a regular part of your routine.

Prioritize your mental health

Being a caregiver is a challenging role that can weigh heavily on your mental health. Practice regularly taking care of yourself. That could be talking to a therapist, joining a support group, or adding journalling or meditation to your routine. Taking breaks is essential for your mental health to ensure you don’t burn out. Schedule time to get out of the house, make room for the things you love to do, connect with others, and know your limits. Set boundaries and ask for help so you don’t get overwhelmed. And try whenever you can to keep a sense of humour – some days, it may be the only thing that helps you get by!

Learn about your loved one’s condition

Knowing about the disease or chronic illness your loved one is facing will help you provide the best possible care. Understanding the challenges they might face can help you be prepared. Being up to date with current treatments can help you advocate for your loved one. Be sure to seek reliable, current resources for the best possible information.

Have open conversations about your caregiving role

Talk to your loved one about what they need from you. What can they still do on their own? They may only have a small amount of energy to expend in a day – ask them how they want to spend it. What would they like to prioritize – what means the most to them? Small things like making a grocery list, preparing a meal, or folding laundry while they sit can help your loved one keep a sense of independence. Be sure to have these conversations often, as their priorities and energy levels may shift.

Ask for help

Don’t be afraid to ask for help. Many people want to lend a hand but don’t know how to help. Be prepared with a list of things they can do when loved ones offer assistance. Create a list of jobs others can take off your plate (picking up prescriptions, driving to appointments, buying groceries, making dinners or walking the dog). Seek resources like care workers or nurses who can come into your home and give you a break. And if friends and family are offering to help, take them up on it.

Being a caregiver is one of the toughest things you’ll ever do. Find compassion for yourself. Give yourself grace because you have many demands on your time. Remember that your physical and mental health is essential. You deserve fun and relaxation, and there is no shame in asking for help so you can take a breather. There will be both good and bad days – on the good days, soak it up and celebrate the small wins. And always remember you aren’t alone in this!

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Lori Grover is a guest blogger for Mackenzie’s Mission. She was diagnosed with AL Amyloidosis in 2016 and writes to share experiences and lessons learned during her journey. When not writing, she is mostly a stay-at-home mom, florist, crafter, lover of books and food.

Patient Insights: Impact on a Family

Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights.

Have a listen to this brief clip from Darlene with thoughts on how this disease has impacted her family.

Role of Interdisciplinary Care Teams for Amyloidosis Patients

Dr. Melissa Lyle from the Mayo Clinic offers insights into the importance of having an interdisciplinary care team across sub-specialties for amyloidosis patients. Diagnosing and treating complex diseases, such as amyloidosis, elevates the importance of alliances within the patient care team.

Ensuring Adequate Racial and Ethnic Representation in Amyloidosis Clinical Trials

Dr. Frederick Ruberg, cardiologist at the Boston University Amyloidosis Center, discusses the diversity of racial and ethnic occurrences of amyloidosis, and why this should parallel patient representation in clinical trials. He illustrates the persistent disparities observed by race and ethnicity and how un-recognized ATTR amyloidosis, for example, could be contributing to such differences. Adding more evidence, he shares how published clinical trials of ATTR-CM agents are insufficiently diverse. He summarizes possible solutions for improving future clinical trial participation.

Racial and Ethnic Disparities in Cardiac Amyloidosis

Dr. Michelle Kittleson from Cedars-Sinai discusses the five domains defining the social determinants of health. She explores how these domains can have direct and indirect effects on the health and well being health outcomes. Her presentation looks at cardiac amyloidosis through the lens of these domains, which is important for cardiologists to understand in order to diagnose, treat, and care for patients.

Mastering the Art of Patient Care

Based on all the lessons she learned, coupled with the wisdom from her mentors, Dr. Michelle Kittleson from Cedars-Sinai shares a summary of her published book “Mastering the Art of Patient Care.” She reveals her tips, tricks and pearls of wisdom for caring for yourself and patients. A definite must read for those pursuing a medical career.

Patient Insights: Giving a devastating diagnosis

Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights.

Have a listen to this brief clip from Darlene with thoughts on giving a devastating diagnosis.

Multidisciplinary Care for Cardiac Amyloidosis Patients

Multi-systemic diseases such as amyloidosis are complex to diagnose, but also complex in treatment and ongoing patient care. It takes a village. In this seminal piece, the American College of Cardiology (ACC) provides an Expert Consensus Decision Pathway on Comprehensive Multidisciplinary Care for the Patient With Cardiac Amyloidosis. 

According to Dr. Vaishali Sanchorawala, Director of the Amyloidosis Center at Boston Medical Center, “The results and progress in the therapeutic landscape of systemic amyloidosis are unbelievable, unprecedented and unheard of for this uniformly fatal disease of the 1990s. But they are not enough, and therefore we need to work together to make a difference.”

This paper is an absolute must-read for cardiologists and other specialties such as neurology, gastroenterology, nephrology and hematology.

To read, CLICK HERE.

 


Thank you.

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Source:
Kittleson M, Ruberg F, et al. 2023 ACC Expert Consensus Decision Pathway on Comprehensive Multidisciplinary Care for the Patient With Cardiac Amyloidosis. J Am Coll Cardiol. 2023 Mar, 81 (11) 1076–1126.
https://www.jacc.org/doi/10.1016/j.jacc.2022.11.022



Patient Insights: So many medical specialists

Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights. Have a listen to this brief clip from Darlene with thoughts on dealing with so many medical specialists and an expanded care team.

Seven Ways to Advocate for Your Health

If you have been diagnosed with a rare disease I’m sure that at some point you have met a nurse or doctor who has never heard of your condition. Some flat out say “what’s that?!” Some side eye you while they quickly google it on their phone. One nurse said to me once “Wow! If this was a teaching hospital everyone would want to come to see you.” Gee thanks. Way to make a girl feel special. Now I don’t blame them for this. Doctors and nurses have a very stressful and essential job and we would be lost without them. But they are human. And no one can be an expert in every condition or disease that exists. It’s impossible.

Which is why it’s a good idea to be an active member of your health care team and advocate for yourself to ensure your needs are being met.

Seven Ways to be an Active Member of Your Health Care Team

  1. Don’t take no for an answer!  This is particularly important when you are searching for an elusive diagnosis. Don’t let them push you away or try to tell you that your symptoms are all in your head because they can’t figure you out. Trust your instincts. If you know something is wrong, go back again and again until they take you seriously. Get a second opinion. Don’t give up!
  2. Seek out experts.  Once you have that diagnosis, do some research. Find the best specialists near you and ask to be referred to them. Ask your doctors, hit the internet, join a support group and reach out to others who have your disease. Ask around and find the experts! They are the ones you should put your trust in.
  3. Educate yourself.  Don’t just go crazy with Google, as information in the public domain may be outdated. Ask your doctor for reputable sources of information. Join a support group, find others like you and learn from them. You can gain a wealth of knowledge from people who are living with your disease. Educating yourself is an important part of your healthcare.
  4. Ask questions!  Why do I need this medication? What are the side effects? What do we do if I get those side effects? What happens if I don’t take this medication? Go through the risks and benefits of medications and treatments with your doctors. Don’t be afraid to ask questions. Your doctors want you to make informed decisions.
  5. Ask your expert before taking any medications or supplements.  If you end up in the emergency room or a walk-in clinic, if time permits, run any suggestions for medications by your expert. Doctors who don’t have extensive knowledge of your rare disease may not know all of the potential complications and interactions. And don’t take any type of supplement or over the counter medication without first getting approval from your specialists. I love natural medicine, but it needs to be treated with the same respect and caution as any other medication. Natural does not equal safe.
  6. Organize your info and carry it with you.  It can advocate for you if you’re not able to. I have a little folder which contains my official diagnosis report, a list of treatments I’ve had, a list of current medications, and the names and numbers of all my specialists. It comes along if I have to head to the emergency room.
  7. Speak up if you are suffering.  I think sometimes we push through our suffering assuming that it’s just part of the process. But it may be as simple as adjusting the dosage or adding in another medication. So, if you are having a new or worsening symptom or a side effect from a medication, let your health care team know. There may be something they can do to help.

You are the most important member of your health care team. So, speak up when something is wrong, ask questions, learn as much as you can, and find the specialists that you can put your trust in. Self-advocacy can be a powerful force in your health care journey.

 

Lori Grover is a guest blogger for Mackenzie’s Mission. She was diagnosed with AL Amyloidosis in 2016 and writes to share experiences and lessons learned during her journey.  More wonderful blogs by Lori can be found on her page Amyloid Assassin.  When not writing, she is mostly a stay at home mom, florist, crafter, lover of books and food.

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