If you have a loved one with paroxysmal nocturnal hemoglobinuria (PNH), you know firsthand how challenging it can be to live with this disease. You may not think of yourself as a caretaker. After all, you’re just someone’s spouse or child, so you are supposed to be there to help.
But whether you live in the same house or across the country, you’re in a caregiving role. It’s very common: Almost 30% of all adults in the United States are caregivers, including 20% of people who work full-time. Caregivers of people with rare diseases, like PNH, may find the job is even more time-intensive: One survey found that they spend about 37 hours a week on average providing care, which is about 12 more hours a week than general caregivers.
You may help your loved one do things they are too fatigued to do themselves, like household chores. You may occasionally drive them to a doctor’s appointment or help them manage their prescriptions. You also provide emotional support when your loved one deals with the emotions that come with living with a rare disease.
Here's How to Take Care of your Loved One – and Yourself
Help them organize their health care team. It’s very important that you find a doctor who has experience with PNH. Since it’s such a rare condition, this may be hard to find. The Aplastic Anemia and MDS International Foundation has a list of doctors who specialize in PNH on their site. Your local hospital or medical center may also have suggestions. Some other ways you can help your loved one find doctors who meet their needs include:
- Checking their health care plan for a list of covered medical providers
- Looking at the American Medical Association’s Doctor Finder website for information
- Searching for board-certified specialty doctors at the American Board of Medical Specialties website
You may also want to encourage them to get a second opinion.
Go to doctor appointments. It’s a good idea to go with your loved one to medical appointments. You can take notes for them, so that they can focus on the conversation with their doctor. Ask them what they want from you during the visit. Do they want you to ask questions, too? Or just take notes? Remind you if you forget to ask the doctor something? Also ask if they want some time alone with the doctor for a more private discussion. Remember, your role is to be supportive – not to run the show.
Help them get affairs in order. Medical emergencies can crop up with PNH. For example, your loved one could end up in the hospital with a life-threatening blood clot. You’ll need a plan in place for these situations. Find out where your loved one puts important papers, if you need to get to them. Get the names and numbers of all their doctors, insurance company, and attorney. Make sure you have copies of their health insurance cards. Ask them to grant permission for you to speak to their medical team about their health.
You can also help your loved one organize their current medical information. Make sure they have an updated list of the following to bring to medical appointments:
- Medical history
- Family medical history
- List of current medications, supplements, and vitamins
- Immunization records
- Copies of recent imaging or scans
- Lab values
- List of doctors or specialists the patient sees
Much of this information can now be found online in electronic medical records (EMRs). Make sure that’s been shared with any new providers before the first appointment.
Before your loved one visits a new provider or facility, request that EMRs be shared with the new provider before the appointment.
Ask how much they want you to share. It’s important to respect your loved one’s privacy. Find out how much they want to reveal to family, friends, and even casual acquaintances about their PNH diagnosis and how they feel. They may want to keep it private or tell only a few people. And don’t post about it on social media without their approval.
Use an app. A caregiver app can help you coordinate care. You can use it to recruit others to plan meal deliveries, set up rides to treatment, help you with household chores, and even just give updates about your loved one. This may be particularly helpful if you’re a long-distance caregiver, or if you need to travel and will be away from your loved one for a while.
Just be present. You may feel powerless if you watch a friend or loved one struggle with the symptoms of PNH. You may focus so much on day-to-day tasks that you don’t take the time to simply be there for them. But being present is one of the most important things you can do. They may or may not open up to you about their feelings, but you can let them know that you hear them and acknowledge their emotions. You can do this by:
- Gentle words
- Touch
- Eye contact
- Silence
This allows your loved one to understand that you hear them and understand what they are going through. You can’t make their PNH go away, but you can be there for them to offer emotional support.
Take care of yourself. Studies show that people who are caregivers are more likely to get chronic diseases, insomnia, anxiety, and depression. You need to take steps to protect your own physical and emotional health. Imagine a bucket filled with love and energy. As a caretaker, you constantly pour its contents out for your loved one. If you don’t take steps to refill it, it will be empty, and then you can’t help them.
It’s important to have your own self-care plan. It can be anything that you enjoy. Make a list and try to experience them at least once a week. If you can’t do that, make time for deep breathing. Inhale through your nose for four counts, hold your breath for seven, and exhale for eight. This can help relieve stress.
