In January 2011, I had a period of illness that sparked an emergency tracheostomy surgery. It also marked the time that home nursing care was unexpectedly thrust into my family’s lives. In the years since then, my nurses have become an important part of our household.
They handle many aspects of my daily care, including administering breathing treatments, showering and dressing me, and monitoring my health and ability to breathe — while providing companionship. I need full assistance with almost every task. I tend to have trouble breathing and coughing up secretions. Due to these factors and others, I need to have a trained caregiver close by, 24/7.
My home nurses manage my medical care, and they also provide significant input for my personal life. Some nurses stay with us for a short time before they move on to their next adventure. Others choose to remain a part of our household for many years. Regardless of how long they work with us, each has some degree of personal influence.
A few have become my close friends, and we have stayed in contact with others who have left. It’s natural to build relationships with people we spend so much time with. In my experience, close personal bonds often help to maintain healthy working relationships.
While having nurses in our home is a necessary part of my health management, healthcare is not the only role that they play in our lives. One of their primary purposes is to stay with me while my family is at work, busy with activities, or running errands.
My mom is my primary caregiver. She has been dedicated to this role for my entire life, and she frequently reminds me that she enjoys it. But I realize that she should have time for other things, such as a job, coffee with a friend, a date night with her husband, time with her son, a nap, or even stopping at the store on her way home to buy a bag of cat food. She deserves a break.
At times, our nurses step in to ensure that I am well cared for while my family attends to other responsibilities or enjoys some much-needed respite.
We are fortunate to benefit from private insurance, other sources of aid, and programs that are available here in Indiana. One program, the Aged and Disabled Waiver, helps us with nursing services so that we can enjoy the luxurious norms of life that many people take for granted. And yes, having time to buy cat food is a luxury — one that is probably most appreciated by our slightly spoiled cat.
We are blessed to be able to say that the caregivers who work in our home are a part of our team. I hope that they know how much our entire family appreciates them.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.