Caring for Rare Disease Caregivers

Caring for Rare Disease Caregivers

Resources for Family Caregivers of Loved Ones with Rare Diseases

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!

  • 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 [...]

  • Have you ever wished you could just pick up the phone and call someone who would take stock of your situation, help you access services, coordinate your loved one’s care and more? You’re definitely not alone. Some people provide these services and they are called case or care managers. Care managers are usually nurses or [...]

  • When your loved one is in a medical crisis, your ability to observe symptoms carefully and report accurately might be, quite literally, lifesaving. But it is a challenge to function clearly in a time of crisis. Below is a list that will help you remember what to look for during a crisis. You may want [...]

  • You may want to accompany your care recipient to doctor’s visits. This way, you and your care recipient can work together as members of the health care team and ensure that you both understand the recommended medical course of action. This is an especially important role if your care recipient is cognitively impaired. Here [...]

  • The single most important thing you can do to function effectively as a caregiver is to create and maintain a comprehensive file of information about the person you are caring for. There is a variety of ways to create and maintain a patient file. Some people prefer paper, some electronic, some a combination of [...]

  • Download CAN's Medication Checklist Form Para ver esta lista de verificación en español, haga clic aquí An up-to-date medication list is an important tool for the family caregiver and your care recipient’s doctor(s). People with chronic diseases or disabilities take more medications than any other group of patients. With the number of medications some [...]

  • 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 [...]

  • Learn strategies for speaking with your loved one's medical staff.

  • 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 [...]

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

  • 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, [...]

  • 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 [...]

  • 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 [...]

  • 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 [...]

  • 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 [...]

  • “What I learned from my own experience is that family caregivers are the ones holding everything together – and they’re paying a high price, including putting their own health at risk.” Sheila spoke these words when her dear friend was diagnosed with cancer, and she became a caregiver for the first time. For years, [...]

  • How many times have you thought to yourself, “If only I had some help?” It’s one of the top wishes we hear from rare disease caregivers. Ironically, however, all too often it’s actually the caregivers themselves who stand in the way of getting that help. Why is it so hard to ask for and [...]

  • No one can expend their energy, strength, and time giving to someone else, especially in the demanding role of family caregiver, without replenishing their own reserves. Sooner or later, something has to give. Respite care brings temporary relief to primary caregivers from the continuing demands of someone with special needs. Respite care may be [...]

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 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 [...]

  • 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 [...]

  • “The only thing constant is change.” We’ve all heard this well-worn adage time and time again. We accept change as part of the rhythm of life, as when spring finally emerges and winter or an engagement leads to marriage. These are anticipated changes, positive alterations in our lives. We look forward to them and [...]

  • The slogan she saw on a man's t-shirt at the mall stopped Brenda in her tracks. "It said 'Normal Is Dull,'" recalls the 55-year-old caregiver whose mother has Alzheimer's disease. "I just stood there thinking, 'You should spend a few days with us, mister. You sure wouldn’t have to worry about normal being dull [...]

  • "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 if you've been feeling this way day after [...]

  • Most caregivers willingly and lovingly undertake the duties required of them, whether suddenly or over the long term. They give them all to ensure that their husbands, their parents, their children or other loved ones go through critical or chronic illness, even death, with as much dignity, compassion, and independence as possible. For many caregivers, [...]

  • How do we know when our mourning is reasonable, or when it has become dysfunctional and needs to be addressed? "Too long" depends on the person and who they've lost, as well as the duration and intensity of caregiving, say professionals. Losing a child is uniquely devastating because it permanently alters the future. While [...]

  • Following my parents' deaths, five weeks apart in a distant nursing home, I experienced deep depression. Ignoring self-care during years of intense caregiving led to emotional and physical collapse. Exhausted and indifferent, I struggled to find purpose in their suffering or peace with my efforts. It Takes Time Enduring a year of survivor’s guilt, [...]

  • For all of his eight years, Carolyn cared for her son Billy, a hydrocephalic child who was ventilator-dependent and had a seizure disorder. He also had a stomach tube, thyroid problems, and brittle bones. Developmentally, he remained at two or three years old. The state waiver program provided Carolyn with 16 hours of nursing care [...]

  • The confusing mix of emotions that follows in the wake of the death of a loved one sends us for a time into an unfamiliar landscape. We expect to be devastated; but when there is also relief, the paradox can bring on waves of guilt. And that can make it difficult to sort out [...]

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.

  • When you are parenting a child with a rare disease, there are many emotional costs to wrestle with. After a while, even the most resilient parents may find that the burdens of caregiving have transformed their closest relationships in ways that leave them feeling frustrated and unhappy. Sometimes, the all-encompassing care required by your child [...]

  • When your spouse or partner has a rare disease there is a hidden emotional cost to caregiving. It's the price you pay when illness or disability deprives you of the intimacy you once enjoyed. Caregiving for a Partner brings unwanted responsibilities. After a while, even the most resilient persons may find that the burdens of [...]

  • Although family meetings can be hard, they are a good way to pull together and support you and your loved one. Don’t be afraid to ask for help with organizing the meetings. And remember that everything will not be solved all at once. Providing care is an ongoing task. Pulling the family together to [...]

  • 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 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 [...]

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)