Living With Lupus: Issue 8

Suzanne Greetings Everyone, I am thrilled to present an issue of our magazine that shows admiration and appreciation for all those who are caregivers, not only to us lupians, but the world. For some of us, “we can’t even imagine,” what being a caregiver is like. This quote says a lot.

“There are only four kinds of people in the world: Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.” – Rosalyn Carter Why author this article? This past winter has been a heartbreaker for myself and my family. The losses were great.

The losses for many of you have had equal or greater pain. We can’t even imagine. Many of us became caregivers or needed a caregiver. Fewer were on the sidelines.

My phone had a constant flood of calls from people who shared so much sadness in their lives. Many of them became caregivers unexpectedly overnight. During this recent surge of the COVID pandemic, many families found themselves caring for their loved ones at home. Those who had family in nursing homes or retirement homes brought them home to care for to protect them from the virus. Others had the virus in their homes that just kept bouncing off each family member. Too many lost loved ones. All of this was happening so fast and so unexpected. Yet, you rose. Typical of us lupians we adjust, adapt, and conquer.

Usually during February, I like to write about love and romance. This year things are so different and there is so much sadness I am fearful that love and romance are overshadowed by all the grief. Still, I look at the love that filled our lives during these challenging times. The reality is that in order to be a caregiver you must first have love in you that you are willing to share unconditionally. This love you are willing to give of yourself to someone else.

I wanted to take a look at this kind of love.

My sister cared daily for my 98-year father. She would encourage myself and my siblings to visit more often, because she felt we were missing this wonderful part of our father’s journey. Although challenging to care for him. It was rewarding and fulfilling for her. He depended on her. The love he had for her we can only imagine.

My brother-in-law cared for his wife for the past 19 years (kidney cancer). He is an angel. He knew her every move and beckoned to her every need. He was like a robot. This robot (the steel man) had a giant heart. You looked at him and all you saw was love. It was like magic. A true love story.

We lost both of them just before Christmas this year. Life is like a ripple in a stream. It comes and goes. But the love and the memories they left continue to flow throughout the lives of those left behind. The love of the caregiver is priceless. Yes, some of us pay for caregiver service, but for many more it is a family member, a friend, and often a stranger.

As people living with a chronic illness, how do we respond to those that care for us? I want you to take some time and think about the people that lift you up on a daily basis. How do we see them? How do we treat them? Do we truly know what it takes to be a caregiver and do we even care? Do we take them for granted? What are our expectations? Are we demanding? Do we know what sacrifices they make to care for us? Are they even capable of being a caregiver? The list of questions can go on and on.

I am a seasoned professional patient. Through my journey with lupus there were many peaks and valleys. Looking back at my worst flare years, I had a host of caregivers. Many included my family, even my children. There were many hospitalizations along the way, I had many needs. At one point I was in a rehabilitation facility for two months.