Photo by Adam Fagen

I've just emerged from the worst two weeks of my life. My partner suffered a major stroke, ended up in intensive care, and went through brain surgery. Thankfully she's back at home now and on the road to a full recovery. We had no warning or time to prepare, so I had to learn a lot about how to be an effective caregiver on the fly. I discovered I had several friends who'd been in similar situations, so thanks to their advice and some improvisation here are some hacks that worked for me.

Be there

My partner was unconscious or suffering from memory problems most of the time, so I ended up having to make decisions on her behalf. Doctors, nurses and assistants all work to their own schedules, so sitting by the bedside for as long as you can manage is essential to getting information and making requests. Figure out when the most important times to be there are. At Stanford's intensive care unit the nurses work twelve hour shifts, and hand over to the next nurse at 7pm and 7am every day. Make sure you're there for that handover, it's where you'll hear the previous nurse's assessment of the patients condition, and be able to get support from the old nurse for any requests you have for the new one to carry out. The nurses don't often see patients more than once, so you need to provide the long-term context.

The next most important time is when the doctors do their rounds. This can be unpredictable, but for Stanford's neurosurgery team it was often around 5:30am. This may be your one chance to see senior physicians involved in your loved one's care that day. They will page a doctor for you at any time if you request it, but this will usually be the most junior member of the team who's unlikely to be much help beyond very simple questions. During rounds you can catch a full set of the doctors involved, hear what they're thinking about the case, give them information, and ask them questions.

Even if there are no memory problems, the patient is going to be groggy or drugged a lot of the time, and having someone else as an informed advocate is always going to be useful, and the only way to be informed is to put in as much time as you can.

Be nice to the nurses

Nurses are the absolute rulers of their ward. I should know this myself after growing up in a nursing family, but an old friend reminded me just after I'd entered the hospital how much they control access to your loved one. They also carry a lot of weight with the doctors, who know they see the patients for a lot longer than they do, and often have many years more experience. Behaving politely can actually be very hard when you're watching someone you love in intensive care, but it pays off. I was able to spend far more than the official visiting hours with my partner, mostly because the nurses knew I was no trouble, and would actually make their jobs easier by doing mundane things for her, and reassuring her when she had memory problems. This doesn't mean you should be a pushover though. If the nurses know that you have the time to very politely keep insisting that something your loved one needs happens, and will be there to track that it does, you'll be able to get what your partner needs.

Track the drugs

The most harrowing part of the experience was seeing my loved one in pain. Because neurosurgeons need to track their patients cognitive state closely to spot problems, they limit pain relief to a small number of drugs that don't cause too much drowsiness. I knew this was necessary, but it left my partner with very little margin before she was hit with attacks of severe pain. At first I trusted the staff to deal with it, but it quickly became clear that something was going wrong with her care. I discovered she'd had a ten hour overnight gap in the Vicodine medication that dealt with her pain, and she spent the subsequent morning dealing with traumatic pain that was hard to bring back under control. That got me digging into her drugs, and with the help of a friendly nurse, we discovered that she was being given individual Tylenols, and the Vicodine also contained Tylenol, so she would max out on the 4,000mg daily limit of its active ingredient acetaminophen and be unable to take anything until the twenty-four hour window had passed. This was crazy because the Tylenol did exactly nothing to help the pain, but it was preventing her from taking the Vicodine that did have an effect.

Once I knew what was going on I was able to get her switched to Norco, which contains the same strong pain-killer as Vicodine but with less Tylenol. There were other misadventures along the same lines, though none that caused so much pain, so I made sure I kept a notebook of all the drugs she was taking, the frequency, any daily limits, and the times she had taken them last, so I could manually track everything and spot any gaps before they happened. Computerization meant that the nurses no longer did this sort of manual tracking, which is generally great, but also meant they were always taken by surprise when she hit something like the Tylenol daily limit, since the computer rejection would be the first they knew of it.

Start a mailing list

When someone you love falls ill, all of their family and friends will be desperate for news. When I first came up for air, I phoned everyone I could think of to let them know, and then made sure I had their email address. I would be kicked out of the ward for a couple of hours each night, so I used that time to send out a mail containing a progress report. At first I used a manual CC list, but after a few days a friend set up a private Google Group that made managing the increasingly long list of recipients a lot easier. The process of writing a daily update helped me, because it forced me to collect my thoughts and try to make sense of what had happened that day, which was a big help in making decisions. It also allowed me to put out requests for assistance, for things like researching the pros and cons of an operation, looking after our pets, or finding accommodation for family and friends from out-of-town. My goal was to focus as much of my time as possible on looking after my partner. Having a simple way to reach a lot of people at once and being able to delegate easily saved me a lot of time, which helped me give better care.

Minimize baggage

A lot of well-meaning visitors would bring care packages, but these were a problem. During our eleven day stay, we moved wards eight times. Because my partner was in intensive care or close observation the whole time, there were only a couple of small drawers for storage, and very little space around the bed. I was sleeping in a chair by her bedside or in the waiting room, so I didn't have a hotel room to stash stuff. I was also recovering from knee surgery myself, so I couldn't carry very much!

I learned to explain the situation to visitors, and be pretty forthright in asking them to take items back. She didn't need clothing and the hospital supplied basic toiletries, so the key items were our phones, some British tea bags and honey, and one comforting blanket knitted by a friend's mother. Possessions are a hindrance in that sort of setting, the nurses hate having to weave around bags of stuff to take vital signs, there's little storage, and moving them all becomes a royal pain. Figure out what you'll actually use every day, and ask friends to take everything else away. You can always get them to bring something back if you really do need it, but cutting down our baggage was a big weight off my mind.

Sort out the decision-making

My partner was lucid enough early in the process to nominate me as her primary decision-maker when she was incapacitated, even though we're not married. As it happened, all of the treatment decisions were very black-and-white so I never really had to exercise much discretion, but if the worst had happened I would have been forced to guess at what she wanted. I knew the general outlines from the years we've spent together, but after this experience we'll both be filling out 'living wills' to make things a lot more explicit. We're under forty, so we didn't expect to be dealing with this so soon, but life is uncertain. The hospital recommended Five Wishes, which is $5 to complete online, and has legal force in most US states. Even if you don't fill out the form, just talking together about what you want is going to be incredibly useful.

Ask for help

I'm normally a pretty independent person, but my partner and I needed a large team behind us to help her get well. The staff at Stanford, her family, and her friends were all there for us, and gave us a tremendous amount of assistance. It wasn't easy to reach out and ask for simple help like deliveries of clothes and toiletries, but the people around you are looking for ways they can do something useful, it actually makes them feel better. Take advantage of their offers, it will help you focus on your caregiving.

Thanks again to everyone who helped through this process, especially the surprising number of friends who've been through something similar and whose advice helped me with the hacks above.