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Homeless in the Health System
By: Marian Adly

Letís start with basic numbers: 24/7, three hospitals, two nursing homes, and after a 10-month grueling journey, my father and I made it home together.

It was January 2009 and my father had a fall and hit his head. Suffering stroke-like bleeds, my father barely held onto life in an ICU following an emergency craniotomy. On the second day into his recovery, he was responsive to me and I had hope that he was going to get through it. I gently reassured him that I was by his side and that we would get through this together. It was then I made the decision to stay by my fatherís side around the clock until we made it home together. Little did I know what that journey would entail.

The very next morning, my father suffered another bleed and he slipped into a coma where his vitals where unstable and constantly fluctuating. The drastic ups and downs on the monitors were relentless, leaving me emotionally and physically exhausted. Each stable minute seemed to be accompanied with 10 minutes of sheer panic, especially among the nurses who struggled with administrating IV titrations. I desperately needed to find order in the chaos. I needed clarity with each time I made critical medical decisions for my father, asking the right questions, at the right time, based on the right information. In some instances, some of the doctors, nurses, and managers were angels and at other times, they opposed me. Serving in the role of a fearless caregiver means that opposition is not a battle for power and control, but rather doing what is best for your loved one. Despite the struggles, I stayed focused on my father, doing nothing more than supporting his simple need to survive. If my father had given up, it would have been evident. It was obvious he was fighting, and I was going to fight with him. 

After four months of hospitalizations, several critical surgeries, and a short stay in a nursing home, I was informed that my father could no longer stay in the hospital. In the same breath, I was told that I could not take my father home. I questioned where I would take my father and I was told to find a nursing home. I didnít know where to begin. Again, I needed to arrange yet another transition while buffering my father from all that comes with such a change. He was so fragile. 

After weeks of researching and numerous site visits, I finally found the right nursing home. Then began a six-month stay where I stayed and cared for him around the clock. It was in the middle of our stay that I realized that on our journey we have literally been homeless in the health system, moving from place to place, floor to floor, room to room. It was in that moment I realized that home was my father. 

I am a fierce caregiver because IÖ

  • Informed myself with knowledge to distill good from bad in making the right decisions for my father;

  • Had confidence to make tough decisions. I had refused surgeries, medications, treatments, and hospital admissions when I knew it was not appropriate for my father;

  • Persisted to work through caring for my father, even when things seemed too difficult to bear;

  • Stayed optimistic when everyone around us was pessimistic;

  • Spoke up and advocated for my father.

There were many times when the care demands were so overwhelming that no matter how much of myself I gave, I never felt successful. I am a fierce caregiver to my dear father, because he and my mother were for me as their child.



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