Being a caregiver for someone with interstitial lung disease is something you don’t understand unless you have lived it. The typical American caregiver is burdened with a role that most are unprepared for. The role can vary from providing emotional support to providing help with daily living activities. At some point, it can involve a financial burden and the stress of making medical decisions for those who are unable to make their own. It is not uncommon for a caregiver to spend up to 20 hours a week on caregiving activities, to have an increased chance of depression, and to neglect their health and well-being. At a time when they most need it, caregivers may lack time for themselves, their friends, or a support group.
While loving someone with pulmonary fibrosis, it is hard for me to describe myself as a caregiver. This role is unlike any other relationship role I have ever had. In the early stages, I am not taking care of an aging parent or someone who is incapacitated. The person I care for works, drives, manages her affairs and can carry on with life pretty independently. But she has emotional needs and support that are critical to her well-being. And the future is uncertain.
My experience and thoughts are mine alone; they may not be the same for all caregivers. Here are the things I want the person I care for to know:
I feel helpless
It is hard for me to see you short of breath. It is hard for me to hear you coughing, and still coughing. I dread it. I hate it. I wish I could relieve your discomfort. I wish I could breathe for you. I wish I could give you one day free of the burden you experience with every inhale and exhale. I feel so helpless and it seems that nothing I do helps. If I am silent, I worry that you feel alone. If I speak, I feel that I am hovering and controlling. Whatever I do, it feels inadequate. The most common feeling I have each day seems to be that I don’t know what to do. I don’t always know what you need.
I struggle between being helpful and nagging
When I don’t know what to do, I try immediately to be of help. After all, isn’t that what caring is? Usually, my help takes the form of asking if you have taken your meds or if you need to check your oxygen saturation. Yet, I know that whatever I say, you may feel that I am checking up on you, also known as nagging.
I know that your daily routine is exhausting. I watch you manage your medications, set the times of meals, restrict certain foods from your diet, do breathing exercises, take nasal sprays, Neti pots, exercise, check your oxygen saturation, all the while being chained to an oxygen tank or concentrator. I try to give you a break, but it is sometimes hard for me to be quiet and just be with you. Yet, as hard as this is for me, I know it must be harder for you.
I sometimes feel anger, guilt, and fear
Pulmonary fibrosis is not something that either of us chose. It is human nature to have a range of emotional reactions. I find myself angry sometimes. Not angry at you, but angry at the situation. Angry at the medical community that cannot cure this disease.
I feel guilty sometimes. Did I somehow contribute to this illness? Am I doing enough? And I feel fear sometimes. What is coming? Will your condition become worse? What will the end stages be like? Will I know what to do?
I also feel satisfaction that we face this condition together. I am happy that our relationship is only growing stronger, not weaker, as we cope with challenges. I feel proud of you for managing your symptoms and staying mostly positive. I am happy that we find ways to enjoy life. I feel grateful for the blessing we have, for the medicines that may slow any disease progression, and for every day we have together.
You are not a burden
This disease is not something that happened only to you. It happened to us. I had a vision of our future together. It involved us aging gracefully, traveling widely, and living actively. Now, that future may be very different. I know that this disease is not something you caused. It is just something that happened. Like our other challenges in life, we will face this one together.
I chose to care for you
A friend asked me “when did you realize that you were a caregiver?” I immediately knew the moment when I made this choice. Shortly after we learned of your diagnosis, I spent time wondering what it meant for our life together. Late one night as I was struggling to sleep, I said to myself, “I will do whatever it takes so that she does not face this disease alone. If I have to push her in a wheelchair and drag oxygen bottles behind us, then that is what I will do.” I care for you because of love and compassion, not out of obligation or guilt.
So, dear partner, this is what I want you to know: I care for you.
Are you a caregiver? Download our free guide for people who love someone living with pulmonary fibrosis.