Caring for Rare Disease Caregivers

Caring for Rare Disease Caregivers

Caring for Rare Disease Caregivers

Resources for Family Caregivers of Loved Ones with Rare Diseases

Caregiving Right Now

As a family caregiver of a love one with a rare disease, you can feel overwhelmed and hardly know where to start. That’s not surprising.  Caregivers in the rare disease community face some exceptional hurdles.  Rare disease caregivers often face a higher burden of very intense caregiving activities. You may even have faced the special challenge of having to be the one to educate your medical providers and others about the rare disease itself. So you need information, education and tools that can help you manage the many daunting tasks you face!

    • Prevent RSV. Risk Less. Do More.

    Risk Less. Do More.

    Caregiver Action Network is partnering with the U.S. Department of Health and Human Services’ (HHS) for Risk Less. Do More.—to raise awareness of the latest vaccines for influenza (flu), COVID-19, and respiratory syncytial virus (RSV), and how important they are for family caregivers. What Caregivers Should Know: Viruses cause most [...]

    • Home Care Services: Help with Quality Care for Your Loved Ones

    When Keeping Your Loved One at Home Means Bringing in Help

    As any family caregiver knows, your commitment to your loved one is beyond question. Whether you’ve been providing care for a month, a year, or a decade, you’ve clearly dedicated yourself to ensuring that your loved one has the best home care and quality of life possible for as long as possible. However, in any [...]

    • Care manager strategies

    Care Management for Family Caregivers: Think Like a Care Manager

    As a family caregiver, have you ever wished for professional guidance in coordinating your loved one's care? While you may not be a professional care manager, learning their strategies can transform your caregiving journey. Understanding care management for family caregivers can help you organize, coordinate, and provide better care while maintaining your own well-being. [...]

    • Crisis Symptom Reporting Guide

    Crisis Symptom Reporting Guide for Caregivers

    In the event of a medical crisis, caregivers play a critical role in accurately observing and reporting symptoms. This guide offers a Caregiver Crisis Guide for monitoring symptoms and communicating effectively with healthcare professionals, which can be essential to ensuring swift and appropriate medical attention. Keep this Medical Emergency Symptom Checklist on hand to [...]

    • Doctor Visit Checklist for a Smooth Appointment

    Caregiver Doctor Visit Checklist: Effective Appointment Preparation

    Download Doctor Visit Checklist PDF Managing medical appointments is a crucial part of caregiving, ensuring that you and your care recipient are on the same page regarding health management. An effective Caregiver Doctor Visit Checklist helps streamline this process, making doctor’s visits more productive and less stressful. This checklist allows caregivers to better prepare [...]

    • Efficient Patient File Checklist Review

    Patient File Checklist for Effective Caregiver Management

    Maintaining a well-organized patient file is one of the most crucial tasks you can undertake as a caregiver. A comprehensive patient file ensures you have quick and efficient access to essential information about the person you care for. This organization helps in routine medical appointments and becomes critical in emergencies when every second counts. [...]

    • Medication Management for Caregivers

    Medication Management Tips for Caregivers

    Download Medication Checklist - Word Download Medication Checklist - PDF Descargar la lista de verificación de medicamentos - Word Descargar la lista de verificación de medicamentos - PDF Importance of Medication Management for Caregivers An up-to-date medication list is an important tool for the family caregiver and your [...]

    • Asian Woman Using Telemedicine for Doctor Visit at Home

    CAN Tech

    Technology for Family Caregivers Family caregiving can be one of life’s most rewarding experiences. At the same time, the role you play in keeping your loved one safe and comfortable at home involves significant responsibilities. It also introduces pressures that can be demanding to manage. On any given day, you juggle countless demands, from utilizing [...]

    • How to talk to your doctor

    How to Talk to Your Doctor: Communication Tips for Caregivers

    Caregiver Action Network, previously known as the National Family Caregivers Association, is proud to present "Communicating Effectively with Healthcare Professionals." Welcome to NFCA’s Communicating Effectively with Healthcare Professionals program. NFCA educates, supports, empowers, and speaks up for millions of Americans who care for loved ones with chronic illnesses, disabilities, or the frailties of [...]

    • 10 tips for family caregivers

    10 Tips for Family Caregivers: Balancing Caregiving and Self-Care

    As a family caregiver, your health and well-being is important. But how can you find ways to care for yourself and juggle your role as a caregiver? These tips offer you can use on daily basis to make your tasks easier and make sure you’re not neglecting your own needs. *Para ver estos consejos [...]

Take Care of Yourself

You have heard this message time and time again:  As a family caregiver, you must take care of your own health so you can be strong enough to take care of your loved one.  But we know how hard it is for you to find the time.  This is especially true of rare disease caregivers because caregiving for your loved one is often needed around the clock.  Thankfully, there are tips and tools available to help you avoid burnout and maintain some sense of balance in your life!

Staying Strong Yourself

    • Caregiver Relaxing to Cope with Role Overload

    Coping with Role Overload

    Help and support are crucial for caregivers. Ask for assistance from family, friends, and professionals to lighten the load. Ask for help and accept it. Set up respite care on a regular basis. Make a list of all the support people that are able to help you out, such as other children, parents, neighbors, [...]

    • Caregiver Enjoying Time with Family

    Coping with Time Demands

    Effective time management is crucial for caregivers. Prioritize tasks, delegate effectively, and carve out personal time to maintain balance and efficiency throughout your caregiving journey. Use your high-energy time of day to organize what you need to get done and work on it so that you are in charge of your day. Focus on [...]

    • Caregiver Easing Fatigue by Spending Time with Family

    What Can I Do to Help My Fatigue?

    To effectively manage caregiving responsibilities and nurture your well-being, implement these essential tips for health: stay active throughout the day and prioritize tasks.Activity: If you are at home with your loved one and s/he takes a nap, try and take one then, too, but for no more than half an hour. Ask someone that [...]

    • Caregiver Addressing Disturbed Sleep with Sunlight in Room

    What Can I Do About My Own Disturbed Sleep?

    Here are some tips that other people have found helpful for not getting enough sleep: Establish a sleep routine by going to bed and getting up at the same time. Schedule your sleep schedule around your loved one’s sleep schedule, if possible. If they take a nap during the day, take a short nap [...]

    • Caregiver Demonstrating Safe Lifting Techniques with a Child

    Lifting Your Loved One Safely

    When was the last time you had to lift your loved one out of a bed or a chair? Did it make you wonder if you were going to end up in bed yourself with a bad back? Because caregiving can be such a strenuous physical activity, it’s important to learn what you can [...]

    • Caregiver support

    Caregiver Support: Getting the Help You Need as a Family Caregiver

    Recognizing the need for help as a family caregiver can be a challenging but essential step in maintaining both your health and that of your loved ones. Many caregivers carry the weight of managing daily tasks, offering emotional support, and often dealing with financial strain, but trying to handle everything alone can lead to [...]

    • caregiver asking for help

    Caregiver Help: Overcoming Burnout and Seeking Support

    Caregiving can be a rewarding but also exhausting journey, especially for those who are taking care of loved ones with rare diseases. One of the most common challenges caregivers face is asking for help. As you juggle the daily responsibilities of caregiving, you may find yourself thinking, "If only I had some help." Yet, [...]

    • respite care for caregivers

    A Comprehensive Guide to Respite Care for Caregivers

    No one can give endlessly without replenishing their own reserves. In the demanding role of family caregiving, it’s essential to take time for self-care and rejuvenation.Without respite, caregivers often experience burnout. Respite care offers vital temporary relief for primary caregivers, helping them rest and recharge from the continuous demands of looking after someone with [...]

Complex Emotions

As a caregiver for someone living with a rare disease, you are not alone. An estimated 350 million people worldwide suffer from rare diseases – including 30 million in the U.S. and another 30 million in Europe.

Maybe your own personal caregiving situation started slowly – when your wife was diagnosed with adult Pompe’s disease, for example. Or maybe it happened all of a sudden – when your child was born with Tay-Sachs or another rare disease. But however it began for you personally, there are millions of other rare disease caregivers just like you facing the same challenges you are!

Being a rare disease caregiver is not something you wanted. And nothing can really prepare you for the emotional rollercoaster that comes with being a caregiver. On many days, you will probably feel overwhelmed. Many family caregivers in your situation also experience feelings of anger, depression, and guilt.

Just know that all these feelings are normal. And know, too, that for many people caregiving can ultimately be one of the most rewarding experiences of their lives!

    • Effective coping strategies managing caregiver anxiety

    What Can I Do About Anxiety?

    Effective coping strategies are crucial for managing caregiver anxiety. Know various techniques, from relaxation methods to seeking support, to find what works best for you Try to identify what "triggers" your anxiety. List coping strategies that have helped in the past. Talk with others, such as a support group or online forum, about your [...]

    • Managing Anger Caregiver's Role in Support

    What Can I Do About Anger?

    Understanding anger is essential. It's about recognizing when you're upset, finding ways to express it constructively, and seeking support when needed. Understand that there are reasons that you feel angry. Recognize when you may need to take a break. Try not to hide your feelings of anger. Telling people how you feel helps them [...]

    • relationships in caregiving

    How Illness Changes Family Relationships

    "The only thing constant is change." While some changes in life are anticipated and welcomed, the introduction of illness or disability into a family often comes without warning, fundamentally altering family dynamics and relationships. Understanding these changes and learning to navigate them is crucial for both caregivers and their loved ones. Understanding How Illness [...]

    • Woman and elderly man defining a new normalcy

    Defining a New Normalcy: Finding Balance as a Caregiver

    Caregiving is a journey that transforms every aspect of daily life. For many caregivers, the familiar routines of shopping, spontaneous outings, or even sleeping in on weekends give way to new responsibilities. These changes can feel overwhelming, but defining a new normalcy is an essential step in embracing the caregiving life. Redefining Normalcy in [...]

    • caregivers and depression

    Caregivers and Depression

    “Life feels so heavy. It’s as if there is a gray cloud that hovers over everything I do.” “Decision-making has become so frightening for me. I think I’m losing my mind.” “I wish I could sleep forever.” If you recognize these feelings in yourself and feel this way day after day, month after month, [...]

    • moving on after caregiving

    Moving On After Caregiving: Finding Purpose and Healing

    The caregiving journey transforms us in profound ways, and when it ends, we enter a new chapter that requires its own navigation and healing. Whether through the loss of a loved one or the end of caregiving responsibilities, this transition marks both an ending and a beginning in the caregiver's life. Understanding moving on after [...]

    • complicated grief

    Complicated Grief in Caregiving: Signs, Support & Recovery Stories

    For caregivers, grief often begins long before the final loss of a loved one. This anticipatory grief, combined with the intense emotional and physical demands of caregiving, can lead to a complex form of mourning that may require special attention and support. Understanding when grief becomes complicated is crucial for healing and recovery. What [...]

    • Refueling after caregiving

    Refueling After Caregiving: Self-Care, Grief, and Recovery

    After years of caregiving, it's easy to lose sight of your own needs. When caregiving ends, whether due to the loss of a loved one or the transition into a different stage, it’s critical to focus on refueling after caregiving and rediscovering your own identity. This process is essential for both physical and emotional [...]

    • Empty Road Symbolizing Life After Caregiving

    Life After Caregiving: A Guide to Rediscovering Yourself

    When caregiving ends, many former caregivers find themselves asking a profound question: "Who am I now?" The transition from caregiver to normal life isn't just about changing routines—it's about rediscovering yourself after caregiving and rebuilding an identity that may have been set aside for months or years. A Caregiver's Journey: Carolyn's Story For eight [...]

    • relief after caregiving ends

    Relief After Caregiving Ends: Managing Grief, Guilt, and Healing

    The end of a caregiving journey brings a complex mix of emotions that can feel overwhelming and confusing. While grief is expected, many caregivers are surprised to experience relief after caregiving ends – a natural feeling that often triggers guilt. Understanding these emotions is crucial for healing and moving forward. Understanding the Mix of [...]

Family Matters

If family caregiving came with an instruction manual, it would need a whole chapter devoted to “family issues.” Caregiving affects the entire family. It can fundamentally change the family dynamic in inescapable ways. With so much of your attention focused on caring for your loved one’s condition, your responsibilities as a caregiver can change your relationship with your spouse, your other children, or other family members. And if the rare disease is a genetic disease, there may be more than one family member affected by the disease.

    • intimacy in caregiving

    Intimacy & Caregiving: A Guide for Parents of Children with Rare Diseases

    Parenting a child with a rare disease transforms every aspect of your life, including your closest relationships. The emotional toll of caregiving can feel overwhelming, even for the most resilient parents. As the demands of specialized care consume your daily routine, you might find yourself struggling to maintain the connection and intimacy you once [...]

    • Intimacy when caring for your spouse

    Maintaining Intimacy While Caregiving: A Guide for Spouses & Partners

    When caregiving for a partner with a rare disease, the emotional challenges of caregiving often include a hidden cost - the transformation of your intimate relationship. While providing care is an act of love, many caregivers struggle with maintaining intimacy as their role shifts from partner to caregiver. Understanding the Emotional Impact of Caregiving [...]

    • Family meetings in caregiving

    Family Meetings in Caregiving

    For families involved in caregiving, holding regular family meetings is essential to support everyone involved and coordinate caregiving responsibilities. By organizing family meetings, you can create a structured environment to discuss and address your loved one's needs, plan tasks, and share responsibilities. These meetings foster open communication and allow family members to collaborate effectively. [...]

    • Talk to My Loved One About the Disease

    How Can I Talk to My Loved One About the Disease?

    It may be difficult to know how to support each other at times. Your loved one may not be able to do everything that they want to do. They may have difficulty talking about their feelings. Accept that s/he may feel frustrated by their experience. Communication may be hard in the beginning. It will [...]

    • Effective Communication Strategies With Loved One

    What Are Some Effective Communication Strategies?

    Effective communication starts with scheduling uninterrupted daily conversations. Listen actively and allow your loved one to express themselves fully without interruptions Schedule time to talk every day without interruptions. Find a quiet time and ask if it's okay to talk. Try to avoid serious discussions at night.People are most likely to be tired during [...]

Other Places for Help

Rare disease caregivers have smaller disease communities to rely on for information and support. You might even be the only one in your geographic area that you know of who is dealing with your loved one’s rare disease. All too often, it can seem like there is a general lack of available resources and support networks. But there are more resources than you may know about that can give you answers to your questions and get you some of the help you need!

Links to Rare Disease Patient Organizations

Our Rare Disease Caregiver Advisors

Rhonda Buyers
Executive Director, National Gaucher Foundation (US)

Davor Duboka
Executive Director, NORBS (National Organization of Rare Diseases Serbia)

Toni Mathieson
Executive Director, Niemann-Pick Disease Group (UK) and Board Member, International Niemann-Pick Disease Alliance

David Pena
President, Pide un Deseo (Mexico)

Scott Radabaugh
Patient and Parent, The FH Foundation (US)