Waking up in the morning to a blue-skyed Northern California is wonderful. Especially when there is almost nothing I have to do. Makes me gleefully and quietly happy.
This was quite the week. And far harder than I expected.
Imagine someone gets out of the hospital post-almost-dying and comes home. Early. Imagine no preparations have been made. No time to make any. Imagine that the only information you (the care-givers) receive is colored flyers about no salt and low fat and progressive walking, along with hand-scrawled doctors’ notations of medications. Imagine you are faced with a row of prescription vials, a walker, and a styrofoam chest of IV antibiotic hookups sitting on the antique dining room table.
Imagine that the only other information comes from the patient, who is weak, and his wife, who is exhausted.
Imagine the visiting nurse is not due until the next day.
It was all harder than I expected. I want to ask any doctors reading here, or anyone who knows a doctor, or works in a hospital, why, if the information technology exists to create a customized discharge plan for patients recovering from serious procedures, it didn’t happen. Was our experience an anomaly?
If you doctors, or you hospital administrators could arrange for everyone who leaves the hospital to have a plan including the following information, that would be very helpful. The plan should be typed. It should be readable. It should be simple. It should have all the information in one place. Please.
- A typed list of medications with instructions and risks. Handwriting is hard to read, and vials of pills that say, “Take as directed,” aren’t too useful. Cover everything. No fair including mysterious pills in packets along with the colored flyers. Also please tell us if aspirin or throat lozenges or over the counter stomach remedies are OK.
- A list of priorities for care. What matters more, no salt or low fat? How important is it that the patient carry out the breathing exercises on that colored flyer. How soon?
- A list of risks, in priority order. What do we need to watch out for? We know this is serious business and we don’t know what to do about it.
- A day in the life. How should his day go? Best to take all pills at once? Morning and night? Regular meal schedules? When will he need to meet again with doctors?
- What home changes ought to be made? Raising chairs, toilets? Building supports and hand grasps?
- A list of all the doctors involved and their nurses, and the liaisons, along with phone numbers. We will probably need to call you, and it makes us anxious to have multiple little business cards that might get lost.
- If home care is involved, when will they be coming and what will they be doing? We love the visiting nurses, once they arrive. But that first night is crazy.
Thanks in advance. Let me also say that the medical care received was extraordinary, and I didn’t talk to one person who was anything but kind, intelligent, competent, and eager to help. My stepfather feels better every day. It’s not the people, it’s something else that made this so difficult.
And to all of you who left kind words for me and my family here, more thanks. One thing I have to confess, though, before we return to style, to house furnishings, to careers and raptures and Privilege, is that I am not selfless by nature. Nor am I sweet by default. In fact, I’ve always been somewhat of a bull in a china shop. Prone to say what I think, even when others all around are resolutely avoiding exactly that. I learned High WASP growing up. I learned careful, square-jawed, corporate style over years of hard work. Wasn’t native. If it were native, I probably wouldn’t be writing here. I’m a bit like the immigrant, an observer in a country of precise behavior, taking notes and reporting to the homeland.
So I can’t take much credit for caring for my mother and stepfather. I love them but there’s nothing extraordinary in that. When you are the only sibling without employment or small children, it’s your job to step in. And you do it as best as possible, using all your capabilities and resources. I got my reward in being able to do a good job.
Have a lovely weekend. And thank you, again.