“I want to maintain my independence for as long as possible, because once it’s gone…. it’s gone,” declares my husband. Chronic conditions, illnesses, or disabilities are a constant balancing act for both loved one and caregiver. Just when it feels like a balance is struck, it starts moving and the struggles begins again to find a new balance.
As a caregiver, I struggle with helping too much or too little. I see my husband doing his best to accomplish a task, yet I see the physical pain or strenuous attempt to accomplish the task, so I want to immediately jump in and assist, to make his life easier. I must restrain, a lesson I am still learning. By rushing to aid, help, or otherwise intervene, I am taking away his independence. I am denying him his right to autonomy. I am setting us both up to fail along this long, arduous journey of living with a chronic condition.
Many people, including my husband, living with chronic conditions constantly experience a lack of control. They have lost the control of their bodies, quality of the life they were living, and a sense of well being. For caregivers, we experience some of these same emotions, yet from an entirely different perspective. As caregivers, we have lost a sense of control over how life was going to be; we mourn the loss of independence of our loved one’s abilities, their faculties, and the loss of their future, as well as ours.
The feeling of losing something that gave life meaning is profoundly upsetting for both loved one and caregiver. We experience it every day. Unfortunately, the magnitude of loss is often thought of in terms of someone else’s sense of what is important. My husband is bound and determined to accomplish certain daily tasks independently, while I watch with great frustration or concern for him. His sense of loss in not being able to do these tasks is what prevents me from jumping in to help or come to his rescue.
Most of us want predictability in our lives, a chronic condition laughs at the very thought.
For many, predictability becomes an elusive state of being. One day, my husband’s illness is benign or at least controlled with medication, the next day arrives only to find the illness coming on strong and not controlled. On good days, there is delight for the reprieve, there is also the fear that the reprieve will end, and potentially come on stronger than before. One bad days there is the fear that it will persist and never relent. Just watching this roller coaster of events for loved ones can take its toll on caregivers, as well.
I want my husband to feel and be as independent as possible, and if that means I have to bite my tongue or look away…. I do. I do not always understand his sense of loss, or his drive and determination to not ask for help. I do understand and respect this illness is his, and his alone. All I can do is be beside him to care, aid when asked, and appreciate the strength we both have. For me that means seeking help and aid myself by educating myself about my husband’s illness, utilizing community resources, seeking support for myself, as well as expressing acceptance and compassion for journey we are on.
Danielle A. McCarthy, MA brings firsthand, real life experience to empower caregivers through emotional support & shared experiences. Danielle is the Executive Director of Vibrant CareGiving offering education & empowerment for caregivers. 970-417-5319