Caregivers for Compromise: Mary and Steve's Story
This personal post comes from Mary, who created the advocacy group Caregivers for Compromise following her experience of separation from her husband, Steve, during the first year of the COVID-19 pandemic. Caregivers for Compromise is made up of members from around the United States who are fighting for essential caregiver visitation rights following a screening and negative COVID test as well as access to Rapid COVID-19 testing “in long term care facilities for staff members and visitors, including essential caregivers” to bridge the gap between isolated patients and their loved ones. For more information on the group and their mission, you can visit their site at caregivers4compromise.com.
Steve was diagnosed with Alzheimer’s disease in 2013 at the age of 59. In 2019, I made the hardest decision I ever had to make: I placed him in a memory care center. Steve was a salesman for his entire career and was very social. He loved being around people and truly never met a stranger. At first, I thought I was doing the right thing by keeping him at home, but I soon came to realize that being in the house all day long was not a fulfilling life and he needed to be around others. Once he settled in at the care centre, he thrived. He loved being around people all day and was even given a seat at the front desk where he greeted everyone who came into the facility. I visited every day after work, getting him ready for bed and we would watch TV as he drifted off to sleep every night. I did that on March 11th.
On March 12th the care center called me and told me “you can’t come back” – the facility was locked down due to COVID.
I immediately called the executive director of the facility to let her know that wasn’t going to work for me. I needed to get to him. Could I volunteer, get a job, anything to be with him? She said, “Let’s be patient, this is temporary. We’re right at the beginning, so let’s wait to see what happens.” As the days turned to weeks and the weeks turned to months, I started getting vocal. I was posting on social media and emailing the Governor of Florida, my representatives, and the media because I wanted to talk about what was happening to Steve and others who were locked away from their loved ones. I kept saying over and over, “There has to be a better way!” Finally, a reporter in Jacksonville picked up the story and began talking about the damaging effects of isolation.
I got a call out of the blue in late June from the corporate office of my husband’s facility saying, “we understand you’d like a job. We have a part-time job if you’d like it.” I responded, “Yes, yes I would.” Then I asked, “What is it?” and they responded, “It’s a dishwasher.” So, dishwashing it is!
I started on July 3rd and after a five-hour shift of lunch and dinner dishes, I went to Steve’s room. When I walked in the door, his back was to me, and when he turned around the first word he said was “Mary.” I wasn’t too late; I had gotten to him in time. He still knew me and knew our love for each other.
The local reporter did a story on my new dishwashing job and that story went viral.
Thankfully, Governor Ron DeSantis saw the story and agreed to meet with me. My argument to him was simple: “Why can I touch my husband as a dishwasher but I’m not allowed to touch him as his wife?” Thankfully, he listened, and after our meeting he appointed me to his Florida Task Force for the Safe Re-opening of Long-Term Care Facilities. On September 1st, 2020, the Governor accepted our recommendation for Essential Caregiver visits and issued an Executive Order allowing us back in.
I began hearing from people all over the country who were in the same situation with their loved ones and I knew I had to do something to bring us all together so we could speak as one. So, the Facebook group Caregivers for Compromise – because isolation kills too! was born. From there, I formed a C4C group in every state because each state was so different in how they were handling the lockdowns. Our national group has more than 14,000 members and our advocacy has led to real change in many states. We are leading the way in our fight for a federal Essential Caregivers Act (HR 3733) that has been introduced in the House of Representatives.
On the day Steve was diagnosed with Alzheimer’s, I promised him that I would be with him every single day and that I would hold his hand every step of the way. For 114 days I was not able to do that. During that time, I was worried that I was losing precious time with him while he knew me, when he knew our love, which is why I felt such a huge urgency to get to him. Thankfully, I was able to get to him while he still recognized me, but so many others lost precious time that they will never get back. Our fight will continue until we pass the federal and state Essential Caregiver bills so that we are certain that this never happens again!
Fight Like a Warrior is always looking for blog post submissions from our community! If you would like to submit a piece related to chronic illness, please reach out to our blog manager at shannan.oharalevi@fightlikeawarrior.org. If you want to share your story but aren't sure where to start, more information on blog submissions as well as a list of prompts can be found here.
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