What I wish we had known about home care when we began
As Home Care Month continues, we’re excited to learn the lessons and knowledge another family has gathered during their time with nursing in their home for their twin boys.
Jenni Ezell is first and foremost a wife to Dave Ezell, and a mother to Ethan (9y/o), Liam (3y/o), Emmett and Owen (2y/o) and Ella Rae Harper (arriving Jan. 2016). In her spare-time, she is a Speech-Language Pathologist at a private school for students with intellectual disabilities in Dallas, TX. She also writes about her previously conjoined twins and the journey that her family continues to experience through the triumphs and trials of a very busy life. You can find out more at www.theezelltwins.weebly.com.
When I tell people that I have four boys and a girl on the way, they ask me if I’m crazy. “Not yet,” I reply with a grin. Then they ask me their ages – we have a 9 year-old, a 3 year-old, 2 2 year-olds, and one arriving in January.” You have TWINS?!” they ask incredulously. Yes. And it gets better. Because my twins are special, and amazing, and inspiring. My twins have special needs. And they require special 24-hour care. We have two nurses in our house at all times to care for our twins. At this point, the mouth of the person inquiring about my family is often dangling open. You see, we are a family of soon-to-be 7, plus two nurses, and we are as content as can be.
Then the questions begin to flow: do you ever have privacy? Is it weird having strangers in your house all the time? Do the nurses LIVE at your house? Etc.
Thinking back to just before they came home, the twins had ventilators, constant breathing treatments, medicines, continuous feeds, and central lines that had to be maintained. I felt overwhelmed at the thought of bringing them home. I also felt overwhelmed by the idea that people would be in our home 24/7 to help us. I felt ashamed that I couldn’t take care of my own children all by myself. Despite these feelings, I was exceedingly excited to finally have ALL my boys under one roof. They would FINALLY get to know each other, play, fight, and just be brothers.
The first few weeks that they were home, we hardly slept. We had constant meet and greets to feel out the nursing staff, we had to train them in the care and management of the twins, and we had to figure out organization systems for medicines, supplies, routines, job duties for day and night nurses etc. It was a pandemonium of chaos. I wish I had known then what I know now about home care.
Shop around for home care companies.
When we were getting ready to come home from the hospital, the social worker asked us who we wanted to use for our nursing needs and durable medical equipment needs. We had only heard of one company, and that’s who we went with. After several months, we came to realize that their work ethic was not in line with our needs and expectations. We spent a few weeks researching other companies, made a few phone calls, and incidentally found a company that not only fits our specific needs better, but they also fit our ideals on patient and family care.
Home care is one of the best resources for families with special needs kiddos.
Having children is stressful. Having a special needs child surmounts the normal stress by at least twofold. I learned early on that good home health nurses are typically caring people who want to help. You should LET them help – especially in the beginning. Most nurses have been in homes before. They have a few tips and tricks about how to organize supplies and the general set-up of your child’s space to be most effective and efficient. Ask them for ideas, for help, or for them to handle putting organization systems in place. If something isn’t working, you can always try something else until you find the perfect solution for your family.
Remember that it is YOUR home.
If a home care worker makes you uneasy, doesn’t do their job, or just isn’t a good fit for your family, ask for a replacement. We had a few nurses who were loud. We are not a boisterous family, and it just wasn’t a good fit for us, so we asked for a replacement, and our company was happy to oblige. First don’t feel guilty for asking for a replacement – the home care workers know that things may not work out with one family, and they may be better suited for a different family. Don’t be shy, and don’t be hateful. Just be honest. Life becomes easier when honesty and humility is applied to any situation.
The home care staff are professionals, not your new BFF.
Becoming friends with the people who take care of your children seems like a very natural thing to do; however, it is better to keep things professional. I did not realize that having nurses and therapies in my home would entail so much “managerial practices.” Sometimes, you have to be straightforward in your expectations, and this can be difficult if you are emotionally connected with a person. If the home care staff starts to become careless or lazy it can be difficult to rectify the problem. I made the mistake of becoming too friendly early on. We lost good nurses because when we needed to correct misunderstandings, the situation became emotional rather than remaining professional. Keep discussions to only things that effect your child’s care, or things that will effect your child’s normal routine.
Make your home inviting and comfortable for the home care staff.
That way, when you find a great nurse, they will WANT to stay! We bought comfortable chairs for our nurses, and provided them with a mini fridge for food and beverages. They have to share it with the boys’ medicines, but I don’t think anyone really minds.
Remember that your nurses are a special part of your child’s life.
They sacrifice a lot of time and energy for your little one – make them feel welcome when your family celebrates your child’s birthday, and especially around the holidays. No one wants to be away from their own family during these special times. Dave and I invited our nurses to our Thanksgiving dinner table last year. Both nurses were from Africa and in 10 years of being home health nurses, they had never been invited to share a holiday meal with the families they worked for – it was their first “traditional, American Thanksgiving meal,” and they were incredibly thankful and gracious for the opportunity to celebrate with us. Good nurses share a very special bond with their patients, and for that reason, we are grateful to all those who give themselves to the care and management of our special boys.
Originally published: November 24, 2015