Clinical Updates Organizing a Home Care System By Catherine G. Wolf My home care experience began with part time help a few evenings a week in the fall of 1999, graduated to a full time live-in aide in February 2000, and went into high gear when I came home from the hospital after a tracheostomy in May 2001. Your experience may be different from mine depending on your resources and the benefits offered by your insurance. But I think the following principles apply to most situations. Write it down Nursing notes are an important way that nurses or any home care staff communicates. But family members should use this method too. It is especially important to write things down when family members and medical personnel who would not normally be there are around. As one of my daughters remarked shortly after I returned home from my tracheostomy: “This is no good. Information is distributed amongst too many people.” Get a binder and dividers. Label one section for daily nursing notes, one for important phone numbers (Also post this list near every phone and by your bed). Label one section for drugs and supplements. Remember to update as your medicine changes. Another good thing to have is a description of the basic procedures for your care. This makes it easier to train new staff. Am I this well organized? No, but I’m working on it. Identify a single point of contact It is desirable to have one person who deals with doctors, nurses, the respiratory company and such. This could be your spouse, the head nurse, or you, if you still have your voice or a consistent method of communicating easily. The idea of a single point of contact is to have someone who coordinates your care. It might not be possible to have such a single point of contact. That’s where your notebook comes in. It bridges the gap between people. In case of emergency, make sure someone takes the notebook along. Be the captain of your team You are part of a team and you are the captain. It is important to get people who will work together, be flexible, and respect your wishes. You don’t need to spend your energy settling disputes between squabbling staff. One way in which home care is different from hospital care is that in the hospital everything is done on the hospital’s schedule. If a nurse comes in to take your vital signs at 6:00 am and you have just fallen asleep, you can’t say, “Go away.” Home care on the other hand should take place according to your schedule. Make sure the people you hire understand that you are the boss. For example, I am a night person. So the night shift begins at 12:00 am, and the night nurse or aide does my care. Also it is important to match the skills of the person to the task. Early on when I was wheelchair bound and could not use my hands, my husband was uncomfortable leaving me alone to play tennis. We hired a law student who had never done home care to cook and feed me dinner. She probably was much better company than a home health aide hired from an agency (and much cheaper). Be proactive Being proactive means “hope for the best, but be prepared for the worst.” This applies to any illness, but particularly to home care, where needed modifications often require some lead-time. I guess I couldn’t (or wouldn’t) admit to myself that the day might come when I would no longer be able to climb the stairs to the second floor. So I waited until I started having problems to call in contractors for a stair lift. As it happens, we have a turn in our stairs. The stair lift had to be custom-made in England , which took about ten weeks. For the last two weeks before the stair lift was installed, I climbed up the stairs using books as half steps, grabbing both handrails with my husband pushing my butt. In contrast, I got my feeding tube in February 2000 when I was still eating by mouth, though quite slowly. In June I got a cold and could not swallow. I simply switched to the feeding tube, avoiding dehydration. I never did go back to eating by mouth. I remember my last dessert: chocolate mousse! Share the care In August 2000 my daughters organized a “share the care” meeting. The idea of share the care is to let friends and neighbors participate in some of the tasks with which you need help. The list will be different for each person but may include food shopping, picking up prescriptions, home repairs, staying with you, and the like. I have always worked, so I did not know many neighbors well. I was amazed at who showed up to that meeting. Neighbor told neighbor; there were even people I didn’t know at the meeting. If you need help, don’t be shy. Many people get pleasure from helping others.