Updated: Jun 26, 2021
Throughout my years working as a nurse I saw many patients and their families struggling to navigate the medical world. Some were in crisis (recently hospitalized, falls, fractures) and were having difficulty keeping all the new information together and/or explaining to their families what the doctors/providers where saying/recommending. Some were fighting to keep all the medical appointments and medications straight.
I saw many adult children struggling to help mom and/or dad while also raising their families and working. Many families do not live in the same cities, or states and could not always be present to see/hear what was going on. Many adult children would express their feelings of fear, guilt and frustration in not being able to coordinate everything that was needed for their loved on to be successful.
When my mom was only 64, she was diagnosed with lung cancer that had spread to her liver and brain. She lived with me in my two-bedroom apartment which quickly turned into a mini care center. I was working two jobs and the rest of our family was living in Minnesota. I struggled in not only getting her to all of her appointments and multiple pharmacy trips but also keeping everything in order and straight in my head. She could not go to the appointments herself, she was not able to accurately relay the outcome of her appointments to me. She had a host of new providers and appointments and there were a lot of decisions to be made.
As her disease quickly progressed her needs changed. She needed equipment to be safe, her medications changed often as her pain levels changed and sometimes she forgot to take her medications. We needed more help at home when I was at work and we struggled to find ways to help keep mom feeling as independent as possible.
She eventually transitioned to hospice at home, which added some help but also more people, equipment, and appointments to manage. Then in late January she fell and broke her arm and 6 ribs and was hospitalized. Surgery was an option, providers and therapy recommended a skilled nursing facility for rehab. At this point the cancer in mom’s brain had taken away her ability to make medical decisions on her own, thankfully we had completed an Advanced Directive/Living Will even before her diagnosis.
After the fall and subsequent fractures, I saw an immediate and drastic change in her cognition and functional abilities. I decided with the help of her Living Will to forgo surgery and rehab and continue with hospice care, except now with her decline I was no longer able to care for her alone at home. She could not walk, dress herself, go to the bathroom alone etc. and I certainly could not stop working. She went into an in-patient hospice home for about 7 days while I figured out the next steps. I was also having surgery myself, out of state during this time so it was an even more challenging time for us. After the hospice home, she moved into a group home and I was blessed to find a really nice place with great caregivers, within my budget and close to my home. Mom passed 5 days later while I was at work, and I am thankful she was not alone. Hospice helped to finalize the last steps and they continue to reach out to me and provide support.
Often throughout that year and a half I found myself thinking about how other patients and families are or have gone through similar challenges and crises. I at times struggled to manage it all and I have a background that helped to prepare me for just this type of scenario. What I was not expecting was just how many decisions would need to be made, and quickly, how things could change rapidly and that at times mom was not able to help make these decisions. I was surprised how difficult it was to research and locate the types of services and assistance she needed, and realized that not one of her providers really knew how to help and no one talked about “next steps” or prepared us for future needs.
But the biggest struggle I had was the enormous amount of guilt I felt for not being able to do it all for her all the time
I was blessed to have a SIL living in Minnesota who was not only an emotional support system for me and mom, but she is also in healthcare and was able to be a sounding board for me to bounce ideas off. I had many local friends offer to help and some attended appointments with mom. Not everyone has this type of network available.
I had been thinking about the needs of my patients, my families my community for some time, and knew that this (care coordination) was the type of service that people really could benefit and get value from. I had been loosely making plans in my head and swirling ideas around about what starting a business that would serve the community like this would look like for a few years. When mom was hospitalized in late January I would spend hours and nights sitting with her, speaking with the nurses, the hospitalists, the specialists and hospice, and then updating friends and family in AZ and MN. I would look at mom and see her frustration in being confused by all the medical jargon. It was at that time I KNEW that I would start Best Concierge Nurse Case Management. I had to. I must do something to help others in similar situations. I want to help seniors and their families navigate this complex system, put the pieces together, take some of the stress and burden away and hopefully give them time back. Time to be together, to talk with each other as a family, not always about the medical issues/crises. Let a patients’ daughter BE a daughter again, a husband BE a husband again.
Best Concierge Nurse Case Management can help put all the pieces together. We can arrange and attend medical appointments or care conferences, complete family updates, and help simplify the process. We can help you in figuring out the next step, and assist in coordinating post acute care (rehab, home health etc.) or set up/coordinate any other ancillary services you or your loved on may need.