Tips for Long Distance Sibling care giving

First, April 3, 1999. I got a text from an Emergency Room 150 miles away.  Hence, my older sister was going into critical care. This is the day I became a Long Distance Sibling care giver. This was my third family member with a health crisis.  Thus,  catapulted me into the role of a caregiver. I had learned a lot from caring for my mom.  However, 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.

Prepare for long term care giving

It is over seven years since my older sister has lost her battle with aggressive lung cancer.  Furthermore, she passed within just eight months of her diagnosis. These eight months went by quickly.  Furthermore, days of traveling back and forth to oversee her care was endless. Again, when I was sitting in the hospital, at her bedside, taking over his affairs, and trying to keep managing my own life was overwhelming and time s.   In fat, it was totally consuming. To add insult to injury, 1 week before her radiation treatment, she suffered a stroke.

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Long Distance Sibling care giving is not easy

My Sister did not have a spouse or children to help. We did not live in the same state except for three months out of the year. My first care giving  job was for my father.  He passed in 2015. When my sister’s diagnosis and stroke became overwhelming, I had to help.  I became a long-distance caregiver . 

First of all, the stroke lead to 2 surgeries.  In addition, she was receiving radiation and chemo treatment. Her ability to manage  affairs was hugely impacted by the the stroke.  Furthermore, I was told by the neurologist, that I would need to take over. I had gone through this about my Dad after his stroke. The difference was my Dad was 83 and my brother was 57.

The experienced caregiver has some advantages

I had some experience with caring for my Dad.  However,  with my sister, things were not the same.  I found out ,they had different needs,  Thus, my familial care giving roles was turned upside down.   I was forced to differently cope with the changed my relationship with my sister. And, yes,  Long Distance Sibling care giving is harder.

Every Caregiver stresses over when we are going to have to take care of  our Mom and Dad. However, for many, this new job role was not planned for. Again, some have learned from being a prior caregiver,

People’s role will changeover time.  In addition, many new challenges are going to arise. For example,  my sister was very angry.  Another example, she has a feeling of total helpless.  Over time, she became more and more dependent upon my help.. Truly a double-edged sword. He was grateful on one hand and resentful on the other. Something I imagine most caregivers have encountered.

Some events that had an impact on our relationship

• I became my sister’s medical advocate.  In fact, something  everyone will need when we can no longer do it ourselves.
• I was getting calls 24 hours a day.  I was the “go-to” support system.   Again,  it was very  stressful..  To sum up, left me with  feeling of  helpless.
• Also, experiencing levels of frustration from her inability to take care of herself.
• Also, she was no longer able to manage affairs.
• Jealousy of my independence and ability to do things.  Henceforth, she was no longer able to.   To illustrate,  she pushed me for no apparent reason.  For example,  as she got out of bed, her pain was terrible. I understood her pain and anger and felt guilty for having my own good health.
• 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.

 Ten years of caregiving for my family

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.