Advice from a home health care agency owner
In the Fall 2012 issue of Quest, we ran an article about the benefits of hiring in-home care, written by Amy Nelson, the owner of a large home health agency in the Midwest (Getting Care: There’s No Place Like Home). Among the responses we received was this one, which we forwarded to Amy Nelson for comment:
"Thank you for the article on caregivers in the home. We have skilled nursing for our 27-year-old vent- and feeding-tube-dependent son who has Duchenne muscular dystrophy. It has been very rough going, with many nurses wanting to call all the shots in our home and being insulted or actually quitting if we tried to set boundaries or ground rules. Many times I have felt that it is the nurses running my home, and I’m just a visitor in my own home. They often make me feel guilty that I want to set rules for behavior in my home. From reading this article, I realize that it is OK to set reasonable ground rules and boundaries for these nurses."
Having in-home caregivers can be extremely difficult on families because it is an invasion of privacy and can seem like people are demanding things from you in your home and telling you what to do or what you’re not doing. Sometimes it can seem like having a house guest who doesn’t leave! The key is to remember that as families, you need to be respected and in control.
When using home care services, we recommend you speak directly with the agency and ask that “house rules” be discussed with each staff. Share your wishes on how staff handles your loved one; information about what your loved one likes and doesn’t like; unusual things you may have in your home (snakes, big dogs, etc.); and any other information needed to prepare staff for entering your home. The more they are prepared in advance to treat you as a family and respect your wishes, the better the relationship will be overall.
Just like any professional, sometimes staff think they know best and place judgments on what others are or aren’t doing. This is where you have to set appropriate boundaries with the staff and the agency. Talk openly about what areas you want to control and what you want the caregivers/nurses to take care of. This could include medication refills, speaking to the doctor, changing feedings, etc. Remember that with in-home care, we are bound to follow doctor’s orders, so it is important to not be offended if the nurse/caregiver must verify or speak to the doctor to confirm the order or obtain an order for a simple treatment like diaper cream. It’s the rules we have to follow and shouldn’t be taken that we don’t trust the family.
Setting appropriate boundaries is imperative. It is so easy to feel like you and your family have to accommodate every caregiver’s or nurse’s need or demand, but you don’t. While you need them to help provide care to your loved one, you also need them to respect boundaries and not put you in situations that become uncomfortable for all. Likewise, remember that staff have a hard time telling families ”no” at times. This can cause frustration on the part of the family because they feel the agency or staff is lying to them. The classic example of this is a staff person telling you they will work the weekend and then the agency telling you the staff said they can’t. As much as possible, allow the agency to do the communicating about the schedule, so neither you nor the staff person are put in an awkward situation.
Please know that home health agencies want to help you be advocates for the best care delivery for your loved one. Never be afraid to speak up and voice your concerns or thoughts. If your service provider is not open to this, then you have the right to choose another provider. Best of luck!