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Captain of Your Own Care


Department: Living Well

A patient's guide to organizing and managing a home care team

Catherine G. Wolf is an advocate fighting the neuromuscular disease she was diagnosed with in 1997. The May/June 2006 issue of Neurology Now featured a story on her life along with several of her poems.

My home care experience began seven years ago with part-time help a few evenings a week, graduated several months later to a full-time live-in aide, and went into high gear the next year when I came home from the hospital after a tracheostomy.

Your experience will be different depending on your medical needs, your resources, and the benefits offered by your insurance. But, based on what I've learned since being diagnosed with amyotrophic lateral sclerosis (ALS), I think the following principles apply to most situations.

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Nursing notes are an important way that nurses communicate, 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 among too many people.”

Get a binder and dividers. Label one section for daily nursing notes. Label another section for important phone numbers—and post this list near every phone and by your bed. Label still another section for drugs and supplements—and remember to update it 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.

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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. 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.



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This is 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 home care differs from hospital care is that in the hospital everything is done on someone else's schedule. If a hospital nurse comes in to take your vital signs at 6 a.m. and you have just fallen asleep, you can't say, “Go away.” But home care should take place according to your schedule.

If family members are involved in your care, this may be a delicate matter. I recommend gently explaining that you feel much better about yourself when you make the decisions about your care.

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 midnight and the night nurse or aide does my care. I go to bed around midnight, after “The Daily Show,” and wake up around 10:30 a.m. I usually get to the computer about 1 p.m. (everything takes me about five times longer than a person without disabilities) and work until 8 p.m. A morning person might want the night shift to begin at 9 p.m. The point is that your care should take place on your schedule, within reason.

Another critical difference between home care and hospital care is that in the hospital your nurse can always call for backup by other nurses as well as doctors. In your home, it is just you and the healthcare professional. When you hire someone, try to determine if the person can work independently in an emergency. You can ask the person directly, and include the question when you check references. When an emergency arises (and it will), stay calm. Let the nurses or aides do their thing. After more than five years on a ventilator, I often have better troubleshooting skills than a new nurse. I try to communicate calmly. Many “emergencies” are repetitive. You should make sure the healthcare professional knows how to handle such emergencies, and post emergency procedures in a salient spot.

In addition, 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). No matter their level of experience, always treat caregivers with respect.

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Being proactive means: “Hope for the best, but be prepared for the worst.” This applies to any illness, but particularly to those that require home care, where needed modifications often necessitate 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 10 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 came down with 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!

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That August, my daughters organized a “share the care” meeting. The idea of sharing 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 at the meeting I didn't know.

If you need help, don't be shy. Many people get pleasure from helping others.

“I hope my experience organizing a home care system will be helpful to you.”

Copyright © 2006, AAN Enterprises, Inc.