For the past 12 years I have relied on the help of home health nurses, and home health aides to start my day. The mornings of simply rolling out of bed, and throwing on some comfy clothes have gone by the wayside. My mornings now begin with a specific routine that takes up to the span of three hours. My nurse comes every morning and assists me with getting up, showering, stretching, getting dressed, and getting situated in my wheelchair for the day. I have been with various home health agencies, and I have had many nurses over the time that I have been in my chair. I have a current nurse that has been with me for close to four years, and we have our routine. We have spent many hours together, and she has become a very important part of my life, and I know I am one of the lucky few that has been blessed with nurses that truly care for me.
I feel that I am in a position that allows me to be the voice for those in my similar situation that do not have the same support system as I do. I am currently with my fourth home health agency, and I am completely aware of the decline of home health care in Indiana. It is by no means the fault of the clients that require care at home, I truly believe the fault lies within the home healthcare agencies themselves. I was with an agency for 10 years, and I was released because the agency stated that they did not have enough nurses to cover my hours. Since I was released from that company almost a year ago, I have contacted a nearly 14 page list of home health care nursing agencies, and I received the same answer almost every time…. “We currently do not have enough nurses to take on any more clients at this time.” I fortunately have a nurse that has stuck by my side and she has hired on to every company that I have been forced to skip around to.
Recently, there was an article written by Suzette Hackney in the Indianapolis Star about a woman by the name of Karen Vaughn that hit very close to home with me, and I am sure with many other people in similar situations. Karen is a quadriplegic and a disabilities advocate. She relies fully on constant skilled nursing (20.5 hours every day) because she has no movement below her neck, and she breathes with the aide of a ventilator at night. Vaughn was hospitalized for pneumonia, but when it was time for her to return to her apartment she could not because the home health agency that had been providing her around the clock care would not take her back on because they did have enough staff or nurses. As a result, Vaughn had to stay at IU Health Methodist Hospital. The cost per day was $2,200. After her 11 month stay at the hospital, she had no choice but to go to a nursing home. Not only has Vaughn’s mental state been negatively affected by the stress of being in a nursing home, the level of care that she receives has diminished compared to the care she received at her own home. For Karen, there are so many things at stake along with her health and mental state. She is at risk of losing her apartment, she is at risk of losing the small amount of independence that she still has… she is at risk of losing so many things that others take for granted.
Vaughn is just one of the many who are in this unfortunate situation. It is a problem that is becoming all to familiar, but it somehow continues to be overlooked. This is also a problem that is not going to go away anytime soon. Along with the many people who have disabilities that require home health care, we are a country full of baby boomers and wounded veterans that will need care. The demand is rising, and it is rising at a rapid rate. The number of people that require home health care just in the state of Indiana has gone up 60% over the past three years. There are nurses out there, and I know this because I have been dealing with home health agencies for almost 12 years now. I also know, that a majority of home health nurses are being overworked and not compensated for it. Maybe one of the first steps begins with these agencies taking care of their nurses with better pay, better benefits, better organization, better incentives. At times, acknowledgement and a sincere “thank you” to a nurse that has given up his or her personal time with his or her family to pick up a shift or help a client can mean so much. Although, I know there is no amount of “thank you’s” that I can extend to my nurses that even comes close to showing the level of appreciation for the sacrifices and care they have given me.
Something has to change, and creating awareness can be the beginning of that change.
I am a hard-working and determined 34-year-old woman just trying to live life like everyone else. I will not pass up any opportunity to be an advocate for those with disabilities, or to be an advocate for anything I wholeheartedly support. Everyone has a purpose… and I truly believe this is mine.