When someone that you love has cystic fibrosis, you want more than anything to help them through the difficult times. Simply being there for them is an important first step towards providing them with the support they need. Additionally, you will have to spend a few hours in the day incorporating their CF treatments into your and their daily routine. The role that you will take will not be an easy one. It can take a toll on anyone, as much time, energy, and commitment will be required. While wanting to show your love and devotion is wonderful, there are also other practical ways in which you can show your loved one that you care. These approaches may even make life with CF just a little bit easier.
Maintain good health
Caring from a loved one who has a chronic disease can be both emotionally and physically exhausting. You need to remember to attend to your needs as well – eat healthy foods, drink lots of liquids, exercise on a regular basis, and get plenty of rest. After all, if you do not take care of yourself, then you will not be able to provide the best quality care for your loved one.
Take some time for yourself
If your mother, father, sister, brother, child or another loved one has cystic fibrosis, you want to provide them with the best possible care that sometimes, you may become too consumed in the role of a “caregiver”. Remember that just as you want the best for them, they want the best for you. If you have activities that you find fun and relaxing, such as yoga or painting, then you should not want to or have to give them up. They would not want you to.
Learn more about cystic fibrosis
There are plenty of books, articles, and studies done on individuals living with cystic fibrosis.
You probably know so much about CF already, but it will not hurt to use these resources as a way to read up on the disease and learn more about it. Even online support groups can be a good option to consider. You can share your experiences with other individuals going through the same things you are. You may be surprised at what you learn.
Learn more about providing CF care
Knowing what cystic fibrosis (CF) is and providing care for CF are two separate matters. CF care on a daily basis ranges from taking enzymes and vitamins to antibiotics and other medications. If you have a child with CF, they could require respiratory therapy. In such instances, have a doctor explain to you the different types of respiratory therapy, such as chest physiotherapy. If possible, have your loved ones show you how to give enzymes, other necessary medications, and respiratory therapy. If you still feel unsure, ask questions – the more informed you are, the better care that you will be able to provide.
Treat your loved one with CF the same as you would any other individual
All individuals wish to be treated equally – especially individuals who have chronic diseases. Although you should be sensitive to their needs and fears, try to tip toe around the subject of “CF”. There are plenty of other subjects to discuss and activities to get involved in together. CF may reveal its presence, however, your life and the life of your loved one does not have to revolve around the disease.
Provide emotional support
Having cystic fibrosis can bring about a wide range of emotions – sadness, anger, denial, grief, hope, and fear. All anyone can really ask for is emotional support. Find ways in which you can provide support to your loved one with CF. Every individual needs some type of confidant - let your shoulder be the one that they can lean on through the good times and the bad times.
Avoid exposure to germs and illnesses
If your loved one has CF, then they are at higher risk of lung infections if they are exposed to germs or any type of illness. For them, it is not simply just a cold. For this reason, if you are visiting your loved one with CF, make sure to wash your hands once you enter their home. If they are coming to see you, make sure that your home is as clean and dust-free as possible. Most important, remind everyone in the family the significance of infection control and getting annual flu shots.
Be sensitive and considerate to the stories you share with your family and loved ones
When a loved one is diagnosed with an illness, it is never easy. No one wants to think about pain, let alone believe that their loved one could be suffering from it. Be sensitive to the stories and issues you discuss with your family and loved ones. Consider the impact that a story related to CF could have on your loved ones before you decide to share it with them. We all hope for the best, but secretly, we fear the worst.
Ask how you can help
Every individual’s CF is unique – some have mild lung disease, while others may be hospitalized for more severe problems. There are several factors that can determine the course of the disease for each individual. Speak with your loved one’s medical care team and ask how you can help. Learn about special precautions and help out with grocery shopping, washing, and cleaning. Offer to stay with your loved one and even stay on top of their medical bills and insurance claims. However, try not to do everything for them. Give them time and allow them to complete their daily activities by themselves. A little help and a little push can go a long way.
Remember that CF is a life-long disease
When you care for someone, your instinct immediately goes towards helping them. While you may want to rush to your loved one’s side right after diagnosis, remember that CF is a life-long disease and coping changes over time. Do not stress over what you cannot control. The best approach to take is to be attentive to their needs, focus on what you can do and provide long-term help.
Working CF medications and treatments into a daily routine allows for a more natural flow. If it is made to seem normal, then living with CF can be seen by your family and loved ones as a normal part of everyday life. Sometimes, it may even help to join a support group and share your experiences. Support groups are not just for patients. They are also for loved ones and caregivers who seek valuable insight and wish to release their emotional burdens.
By being aware of what your loved one is going through over the course of their disease, you can learn how to best support him or her. The element of surprise can weigh heavily on anyone, but if you become familiar with your loved one’s condition, you will have the opportunity to learn more about their progress. Establish a routine and be consistent, but do not let their disease become the primary focus. You owe it to yourself and you owe it to them to live your lives to the fullest - surrounded by love, joy, and endless support.