In my last article, I wrote about the feelings of loneliness a patient often experiences after a diagnosis of diseases like vasculitis. This article will focus on the caregivers of these patients who are often overlooked during this difficult time.
The most effective way for me to convey what a caregiver experiences is to stop writing and have my wife, or some other spouse or parent finish the article. Only they know the difficulties faced in such circumstances. In lieu of that however, I interviewed a number of caregivers and found their stories to be quite similar.
Though this article will focus mainly on the spouse as the caregiver, I will reference the parental caregiving issues as well. First and foremost, caregivers experience much of the same emotions that patients do. Initially, they feel shocked, sad, and scared. As time progresses, they often feel overwhelmed, angry, and at times lonely as well, especially the spouse of a patient. Life is altered for both the patient and caregiver and while everyone focuses on the patient’s well being, the caregiver becomes forgotten.
In my interviews with caregiving parents, the responses ranged from empathy to anger, despair to relief. All parents want to replace themselves with their child. They are “sick” at what their child is experiencing and want to remove their child’s pain more than anything else. They educate themselves and they become the “quarterback” of the treatment program. Anxiety however seems to be the most prevalent emotion for the caregiver (parent) of the child. With the diagnoses that really don’t have a “cure” the concerns are lifelong and the questions of “will it come back” remain.
Similarly, spouses are impacted significantly. Their roles change more than the parents because parents are sort of always “caregiving.” The husband or wife however did not get married to be a caregiver. They got married to be a friend, a partner, and a lover. Those I interviewed question what their role has become. It shifts from the aforementioned to treatment advocator, medication monitor, “mother,” and nurse/doctor. They mourn what the relationship was in the past and fear what it may become in the future. The find themselves becoming selfless to the point where they begin to lose themselves, while their wants and desires become forgotten. Who helps them find their way while the focus continues to be on the patient? Anxiety is a daily emotion and the uncertainty can be suffocating.
So what is the caregiver to do in order to get their own help? Lets start with that. Get help! Caregivers need to talk about their experience and emotions. It will not change the patient’s condition, but their voice will be heard and they will be able to express freely how they feel, something they often hide from their children or spouses. There are support groups for caregiving parents and spouses that I would recommend seeking out. Talking to a therapist is great, but knowing that others are in your shoes is what you find in support groups which can minimize the feeling of being alone. During this process, a caregiver must learn to accept that their feelings are real and honest, and that there is nothing wrong with experiencing these emotions. It is critical to confide in someone during this time. As a caregiver, you also need to ask for help. These situations in which a loved one has an illness cannot and should not be dealt with on your own. Don’t be afraid to reach out to others for assistance or for guidance. Arguably the most important recommendation I have is to continue aspects of your life that in the past provided you with a sense of happiness and well-being. Maintaining those activities is of utmost importance in caring for yourself. Your life should not stop, it is just changed. Just as the pilot reminds you to put your oxygen mask on first in the event of an emergency, you too need to take care of yourself first, as you won’t be of great help to your “patient” if you are not well. Keep up with your yoga and exercise, get enough sleep, and eat well in order to stay healthy.
Patients and those who care for them have tough times. Both feel a variety of emotions that cannot go unnoticed or untreated. When someone is diagnosed with Vasculitis, there are more questions than answers, and more gray then there is black and white. Given that, it is sometimes difficult for the caregiver to stay positive and hopeful in searching for the light at the end of the disease tunnel. Remember that as a caregiver, you are not alone. Sharing your story and your emotions, asking for help, and continuing to engage in activities that bring you pleasure are just some of the ways to cope with a role you did not ask to play.
Dr. Jeffrey Fishbein is a licensed clinical psychologist and a partner in the clinical practice of Drs. Gault, Fishbein, and Associates and also as a sport psychologist for the Chicago White Sox professional baseball organization. He has been diagnosed with non-systemic microvasculitis with multiple neuropathies. You can read his full story here. He writes a regular column addressing different aspects of mental health and psychological well-being for members of the vasculitis community.