The day I received a call from an Emergency Room 200 miles away regarding my older brother, I became a sibling caregiver. This was my fifth family member, whose health crisis catapulted me into being a caregiver. I had learned a lot from caring for my father, mother, aunt and uncle, but my experience with my brother was very different; not in every way, but in ways that I thought may be helpful to share with other caregivers.
It has been nine years since my older brother lost his battle with an aggressive colorectal cancer, within just six months of his diagnosis. These six months went by quickly; however, my days of traveling back and forth to oversee his care, seemed endless. Sitting in the hospital at this bedside, taking over his affairs, and managing my own life were overwhelming and time consuming. To add insult to injury, two days before my brother’s radiation and chemotherapy were to begin, he suffered a subarachnoid brain bleed. In addition, he was bi-polar.
My brother did not have a wife, girlfriend nor children to help him. He and I did not live in the same state except for four months of the year. At the time of my brother’s cancer diagnosis and stroke, I was involved as a long-distance caregiver for my aunt and uncle, who had no children, nor anyone to help them. My first caregiving experience was for my mother and father, who had both passed.
Due to the brain bleed, my brother had three brain surgeries before his radiation and chemo treatment could even begin. This delay worried me greatly. His ability to manage his own affairs were impacted by the effects of the stroke and I was told by the neurologist, that I would need to take over his affairs. This was familiar to me, as I was told the same thing by another neurologist about my father after his stroke. The difference was my father was 79 and my brother was 59 when he had his stroke.
I was experienced with caring for my elderly family members, but with my brother, things were different. What I found was that for each of my familial caregiving roles, I reacted, processed, and coped differently, which changed my relationship with my brother. And, yes, this was true with my other familial caregiving, but with my brother, the change had more impact on me. We may anticipate that there might be a time we’ll have to help our parents and grandparents, but for me, this role was not anticipated. Turns out my parents and aunt and uncle were a great training ground; yet, it did not fully prepare me for the sibling factor.
I have learned from experience that the relationship we have with someone before we become their caregiver, will change at some level and in varying ways. Our roles change and with that can come many challenges; something that I never thought of before any “calls” came. My brother was angry and felt helpless as he became dependent upon me. Truly a double-edged sword. He was grateful on one hand and resentful on the other. Something I imagine most caregivers have encountered.
Below is a short list of events that impacted our brother/sister roles and relationship:
I became his Advocate; something we all need when we can no longer do it for ourselves.
Phone calls 24/7 from my brother when I was home and he was in a hospital or skilled nursing. I was his “go-to” support. And, yes it was stressful and oftentimes left me feeling helpless.
Frustration with his inability to take care of himself.
Inability to manage his own affairs made him feel impotent and helpless.
Jealousy of my independence and ability to do things he no longer could. An example was when he pushed me for no reason, as he got out of bed to have one more excruciating painful experience in the bathroom. I understood his pain and anger and felt guilty for having my health.
Unrelenting suffering with overwhelming and unrelenting pain. This was traumatic for me to watch and hear.
Financial challenges. No health insurance to cover his care. I had to apply for Medicaid for him and I was assigned to be his Guardian. The hospital management harassed him about his insurance issue as we waited for Medicaid to come through.
With each caregiving experience, comes different challenges and gifts. Each time we share our own journey, someone else can benefit. When I began my caregiving in 1999, to my knowledge, there was no online support to help me. Today, we have options and caregivers are recognized as a population who need and deserve support and information. I know, I for one, could have benefited greatly in 1999, when my caregiving journey began.
With my background as a clinical and school social worker for twenty years, I had a leg-up in knowing how to navigate systems, find care and resources and work with those providing care. With encouragement from a friend, who said to me, “How did you know what to do? You should write a book!” I did just that, after my fifth and final caregiving experience for my uncle.
During my fifteen years of caregiving for family members, from 1999-2014 I finally learned that staying connected some way, somehow, even if felt like I didn’t have time, was the key to coping with what oftentimes seemed unattainable. Fortunately, I found a Life Coach to help me, who provided sessions over the phone, as I did not have time to go to an office due to my long-distance caregiving. As caregivers it’s vital that we find a way to get support that supports our needs.
What I learned the hard way, is that it is what we do with our feelings, to help us navigate the rough waters when we have feelings that include exhaustion, guilt, sadness, resentment and anger. And, most importantly, remembering that even though we feel that we are alone and that nobody else can understand our situation, that there are many in the same shoes. Different stories, yes, but similar experiences and common threads.
The relationship we have with anyone we care for before the crisis hits, will carry into our caregiving relationship. I think that we must be forgiving of ourselves and the person for whom we care. Which translates to, when we are burned out, we need to ask for someone to give us a break. It is not a sign of weakness; it’s a sign of strength. Being a hero isn’t always the best option. We owe it to ourselves and the siblings for whom we care.