The Caregiver Hat is the Loneliest
Are you or have you ever been a caregiver? It is one of the most difficult and loneliest roles one could ever have. Having a child with a health condition forces you into this role. I know that many people have other family members, like parents and spouses that need care. The thing about being a caregiver is that it becomes never ending pressure and stress. At times can be stressful to just be accountable for ourselves, so taking accountability for someone elses care and life can feel like a burden. For us our daughters neurological condition takes a toll in our lives collectively. Our lives take a sudden halt every time her episodes begin to increase. Not only are we not sleeping at home, but we get constant calls from school to pick her up and endless hospital visits. Most recently she was having about six episodes a day. It was the worst we'd seen since she started having seizures. It's been a long journey trying to get her treatment and diagnosis. She gets admitted yearly for observation, but this time we couldn't wait for her yearly appointment. Before admitting her, my husband and I were missing a ton of work and that was bringing a whole other type of stress. We both felt that we were close to losing our jobs. We had to hire a full-time sitter which was breaking our bank, because if she wasn't being sent home from seizing, she was missing school all together. We were really at our wits end. My oldest was crying herself to sleep. My youngest was traumatized not sleeping. And well my husband and I were just emotionally, mentally and physically exhausted. No matter how much we tried to work as a team, it was almost impossible. It felt as if it was creating tension between us. I know we both individually felt unheard, unseen and unappreciated. And although we were trying to work as a team it didn't feel that way. It was lonely, having to take turns watching her, managing seizures, medication 911 calls and hospitalizations. We didn't have outside help, we really just depended on each other around the clock without a break. And believe me it was so lonely, it was so lonely that we began turning on each other, and not because we didn't love or support each other it was just too much. You start having mixed and conflicting feelings about the situation because it is so difficult. You build resentment, against the world. I want to say that it is normal to have those feelings. That doesn't make you a bad caregiver, it makes you human. It's ok to have feelings, to have moments of weakness and to have moments of doubt. It's a lonely road even when you have support. Caregivers, I tip my hat to you.