In the United States, about 40 million people provide unpaid care to an ill or disabled adult according to AARP. Many of the readers of Sixty and Me are in this situation now or might be in the future. Usually, the patient and caregiver would prefer this care be given at home, if possible.
In June of 2004, my wife, Tina Su Cooper, and I were given a medical choice: home or hospice. Tina had waged a 100-day battle against a near-fatal respiratory infection due to her multiple sclerosis. She had entered the hospital near death and paraplegic. She emerged near death and quadriplegic, on a ventilator and fed and medicated through a gastric tube.
Choosing hospice care would have meant that efforts would be limited to easing her transition to death. Choosing skilled home nursing care would allow us to fight to keep her alive. Our memoir, Ting and I, tells our story.
Together, we decided to continue the battle for Tina’s life at home. This involved setting up the equipment, hiring personnel, and establishing procedures mirroring those of the hospital’s critical care unit. We have succeeded at this for a dozen years.
In this article I will discuss our early challenges in giving her the round-the-clock care she needed in our home. Finding the right nurses is very important for any caregiver who wants to provide the best care possible at home. Staffing problems arose. We had to decide whether to continue with the agency we had hired or employ and manage the nurses ourselves.
In a separate article I will talk about many tips for selecting a home care nurse. Here I will focus on the two options you have for finding staff for home nursing care. You can use an agency or become “the agency” yourself.
Unless you have done this before or are a medical professional, you will have little idea of the complexity of providing skilled nursing care. Our head nurse is Diane R. Beggin, RN and I have spent the past year working with her on a book called How to Manage Nursing Care at Home. Due to be published in late 2016, it is filled with material we learned from this experience. Some of the lessons having been hard-won.
If you start with an agency, as we did, you will get immediate staffing, and the agency will set up procedures for assuring that proper feeding, treatments, medications, toileting, and exercises are instituted and recorded. They will assure that the nurse is certified as an RN, Registered Professional Nurse, or as an LPN, Licensed Professional Nurse. They will confirm staff are bonded or otherwise insured as trustworthy. You will pay substantially more than the nurse receives as the agency has its overheads. One resulting challenge is that these nurses take direction from their agency, not you.
The home care nursing agency takes care of legal issues and will make sure that various governmental regulations are met. This includes wage reporting and tax-paying. If the need for nursing is temporary, using an agency will likely be preferable to hiring and managing the staff yourself.
The agency we started with was recommended by the hospital. It did a pretty good job of finding suitable nurses and staffing our initial round-the-clock needs. However, the quality of the nurses was inconsistent. We found that we could pay the nurses about 50% more than they were getting and still charge our insurer less than what the agency was charging. There were other benefits.
Eventually, we decided that managing the nursing care ourselves gave us a better selection of nurses and greater control of what was being done. However, we had to create procedures for managing the care and implementing them.
There were many factors that supported our decision. I was retired so had time to devote to care and management. The possible long-term nature of Tina’s need for nursing made the investment in setting up the procedures more worthwhile. You may have a different experience. There was availability of skilled nursing help through simple advertising. We enlisted the help of both legal and accounting experts to guide us. If these conditions apply for you, then managing nursing care at your home may be the better choice than relying on an agency.
Once we became responsible for hiring and managing our staff, we had a whole new set of challenges. We will discuss this in a follow-up article and hope that this practical advice has been useful.
Have you or anyone you know ever had to organize nursing care in the home? What were some of the challenges faced?