Unfortunately, I’ve had some experience in dealing with loved ones who face serious medical issues. It’s the worst combination of feeling completely helpless, ignorant (everyone is an expert but you), and having it be someone you love. So here’s what I’ve learned….1, Your loved one needs a medical advocate. If there’s someone in the family who’s a doctor you trust, that’s the person. If not, it’s you. The hospital is like any other organization: it has hierarchies, it has processes. People forget to escalate, and processes break down. You need to be productively assertive  and ask questions.

2. Keep a timeline and take notes. You’re going to have a lot of people and terms thrown at you…you will easily feel overwhelmed. By keeping notes on what happens every day, which doctors you’re talking to, what tests they are running, key metrics like patient vitals-weight, and updates on what’s going on, you’ll at least feel more in control and be able to reference your notes.

3. Get the critical numbers: doctors, PAs, the nurses stations while you’re there. That way you can speak to someone 24*7 and see how the patient is doing.  Information is key: it’s the absence of information that made me nuts.

4. Pain and Medication Management: sounds obvious, but one of the biggest challenges can be filling the prescriptions. Make sure you know which doctor is prescribing what, and make sure you have the prescriptions you’ll need before you leave (because of the opioid epidemic, it can be hard to fill painkiller prescriptions).

5. Post care: this is often the most underestimated part of the patient’s recovery. It’s as important as the time in the hospital.

• You might need nursing support, even full time round the clock care. This isn’t about what everyone feels they should be doing, this is about what’s best for the patient and everyone’s peace of mind. If you think that’s going to be needed, start looking for options before you need them. Usually the hospital has resources and recommendations. It’s a lot to expect anyone to pick up everything the hospital was doing…you need to be realistic about where you (and others) need help.
• You may need new equipment: raised toilets, bars in the shower, shower chairs, personal products like urinals…..Amazon is a Godsend. Whatever the patient is using in the hospital is likely to be needed at home.
• There will be post op doctor appointments and continued medications. Maintaining a calendar and having an AM/PM pill organizer is key, especially when the meds are required twice a day. It’s hard to keep track when you just use the bottles.
• Because the person is mending, they will need to make sure they are eating, even if they don’t feel like it.
• Records management: this varies. Make sure the hospital is sending their records to the patient’s existing doctors: usually they just need name, address, and fax number. It’s key because some tests shouldn’t be repeated in a short time period.  Also, it’s important to have the ability to access these records: if your doctor has e-chart access, you can see everything. If not, you’ll probably need to pay for copies.
• Some of these out of pocket costs will have a portion paid by Medicare. Keep good records, and use the Medicare website for forms and instructions.
• Little things can mean a lot: a new magazine or newspaper subscription, a new coffee maker, brownies.  Something that gives the patient pleasure.

There’s nothing scarier than when someone you love is ill and you feel helpless. What I found productively distracting was to focus on the process and think like a project manager.