Give yourself a night off






Tips for training a caregiver to help with your HPN needs

By Susan L. Friedman, Ed.D.

Do you ever come home from a long day at work, school, or play completely exhausted, only to have to spend another 20 minutes or more having to hook up to your HPN and/or change your dressing before finally being able to go to bed?  Wouldn’t it be great to have a caring and capable partner, family member, or caregiver who can hook you up to your HPN,  just like a nurse in the hospital might do for you? Training a caregiver will make this possible, giving you a well-deserved occasional evening off!

Having made my living as a learning and development professional for the past ten years, coupled with being married to an HPN consumer for 22 years, I’m delighted to share my experiences and thoughts with you.

Even though we have been together since 1995 and married since 1998, I was not trained to help my husband Todd with his HPN until 2007. In 2007 he became very ill. He had to be in the hospital for weeks followed by several additional weeks of recovery at home, and he would need to have a caregiver help him on the nights that he felt less than his best. His impending surgery prompted the need for him to train me to help manage his HPN care.

Before 2007, he wouldn’t even let anybody put away his HPN supplies or order them much less change his dressing or hook him up in the evening and unhook him in the morning. Training me to manage his HPN turned out to be a wise decision considering that it was a very difficult recovery from surgery.

Rather than show me his entire HPN protocol all at once, Todd trained me one step at a time. Training a trusted caregiver as soon as possible can avoid putting him/her in the stressful and potentially risky situation of having to figure everything out for himself/herself following an unexpected emergency. In addition to familiarizing him/her with the three procedures pertaining to HPN care, namely dressing change, hook up, and disconnect, it is best to familiarize him/her with every aspect related to your healthcare. Here, we will just focus on the three procedures described above that relate to HPN care. Let’s get started!

1)  Organize your supplies.

A large part of making your HPN regimen run smoothly and efficiently is having all of your supplies stored together in an organized manner. In order to be able to quickly and easily access the supplies with which you need to be working, I would recommend investing in a few large transparent plastic containers and affix labels to the front of each container that identifies which supplies are in which containers.

2)  Create a typed reference document.

This document should include good written comprehensive instructions on how to successfully handle all three of your HPN procedures, including dressing change, hook up, disconnect, and all supplies and steps associated with each procedure. Keep this document in a safe and easy-to-find place.

3)  Introduce your caregiver to each of your HPN supplies.

After your supplies are organized in your reference document section about supplies, give your caregiver a tour of your supplies boxes. Show him/her every type of HPN supply in every box, explaining the specific function or purpose for which each HPN supply is used.

4)  Explain the frequency of usage of each HPN supply item.

In order for your caregiver to be able to effectively manage your HPN supply inventory without your running out of a needed item, familiarize him/her with the specific number of each of the HPN supplies used daily (or weekly for those who are not on HPN every day).

5)  Go over your ordering schedule.

Let your caregiver know which day of the week and how often you order your supplies, along with the phone number to call or the e-mail address with which to place the order. Verify that the phone number to call is included in your reference document.

6)  Teach your caregiver how to change your dressing.

This next step is generally easier and less involved than are the steps of hooking up to your HPN or coming off of your HPN. It is also a little easier to start and stop and go over a point again if a mistake is made. Before showing each step of the dressing change, tell your caregiver the frequency of the dressing change as well as the time of day or day of the week that you typically prefer to have it changed.

Before having your caregiver jump right in and do your dressing change, I would suggest the following:

6a) Videotape the procedure.

On your iPhone, have a friend or your caregiver tape a video of you changing your dressing.  The tape can then be watched as many times as it takes for him/her to feel comfortable and familiar with the steps necessary to do a dressing change.

I would also make a video of hooking up to HPN and unhooking from it after the infusion is complete, but not showing all three procedures at once. Start with the dressing change video, and have your caregiver master that first before viewing the next two videos. Your caregiver will have the benefit of starting and stopping the video to ask you questions as they come up.

6b) Write detailed step-by-step instructions for the procedure.

Once your caregiver has seen a dressing change performed on video, the written instructions will likely now make more sense to him/her. These instructions should include all materials needed for the dressing change.

6c)  Have your caregiver observe you changing your dressing.

This step will provide repetition and reinforcement of what your caregiver saw on the video and what he/she reads in the step-by-step instructions.

6d)  Quiz time!

Perform a dressing change on an action figure or toy doll. It’s better to make mistakes on a toy rather than on the HPN consumer himself/herself.

6e)  Test time!

Perform the dressing change on the actual HPN consumer, with his/her guidance and supervision.

IMPORTANT:  Steps “A” through “D” are meant for seasoned veteran HPN consumers who want to teach a family member or other caregiver their HPN procedures. If both the consumer and the caregiver are new to HPN, it then might be best to have an experienced and licensed HPN nurse from your infusion company or other HPN clinician teach both of you each step of the dressing change, hooking up to HPN, and unhooking if these procedures weren’t already taught to both of you while you were in the hospital receiving your first course of HPN.

7)  Teach your caregiver how to take you off of your infusion pump.

The reason I would suggest teaching your caregiver how to unhook you from your HPN (after your infusion is complete) before teaching him/her how to hook you up to your HPN is that generally speaking, there are fewer steps involved in unhooking from HPN than there are in hooking up to HPN and beginning an infusion. As is the case for Todd’s HPN procedures, unhooking his HPN in the morning involves only five steps, whereas hooking him up to a new infusion in the evening involves 16 separate steps, not including dressing change.

8)  Teach your caregiver how to hook you up to your HPN infusion, using the same five-step sequence (A through E) which was used to teach the dressing change step and the procedure for unhooking your HPN after an infusion.

9)  Follow up!

In order to benefit from repetition which will make all of this automatic with more practice, retired Nutrishare HPN nurse Marianne Opilla suggests having your “caregiver in training” perform your dressing changes, HPN hookup, and unhooking from HPN every night for an entire week. Then in order to let him/her keep in practice and not forget any steps, have your caregiver do all three of these steps the first Sunday of every month or at some regular interval. Lastly, Marianne recommended teaching your caregiver everything when you are healthy and alert rather than waiting until you have a 103° fever and really do need help.

Above all, when choosing a family member or friend to be your caregiver, consider choosing one who is patient, trustworthy, alert, compassionate, and lastly, has steady hands!