I did a top ten for new families of wounded warriors. This is a follow-up for when the "new" wears off and the routine falls in. This is in addition to the other list, not as a replacement. Just my observations of what I've seen and experienced. Take it for what it's worth...
1. Remember that you are part of the team. The medical staff has many patients, and you only have one. Keep in touch with the doctors, nurses, providers, hospital staff at large. The more involved you are, the better the care.
2. Be informed. Do not be afraid to speak up when you either do not understand or do not agree. Remember to ask questions so that you can keep on top of procedures, medications, treatments, etc. You need to understand everything that is going on. Research it on your own, if necessary.
3. Be respectful. You can ask questions and challenge the doctors, nurses or other providers without being disrespectful. Remember that they really are trying to help, even if the personality might clash with yours.
4. Take a break when you need it. Take advantage of spa days, dinners out, day trips, etc. as you are able. Remember to take time for yourself when you need it. A walk around the hospital or in the garden can do wonders for your state of mind. And don't forget to eat and sleep, because no one needs you going down!
5. Do not be afraid to limit access to the room. The flow of visitors, volunteers, etc. can be overwhelming. If you need to close the door and hang a "Do Not Disturb" sign, go for it.
6. Take advantage of the special visitors whenever you can and whenever it doesn't feel truly overwhelming. They really do help morale.
7. Do not hesitate to ask that the nurse or doctor be changed. You have to feel comfortable with your care provider. If there is a personality conflict or if you have reason to question the provider's ability, do not hesitate to speak up. The other night I noticed a brand new nurse next to Derek's name. She could have been wonderful, but at this stage, we want familiar. I simply said the charge nurse's name and she said, "I know! I had a brain fart. I'm changing it now." She knew we only feel comfortable with nurses who know Derek. We are simply too tired to break in a new nurse.
8. Make sure the nurse's station has your contact information. When you leave the hospital, either to eat, shower, sleep, shop, whatever, they need to be able to contact you in case of an emergency or simply to advise you of a change in schedule. I have gotten calls at 0530 advising me that Derek had been rescheduled to first case and was leaving for PACU in a half hour.
9. Familiarize yourself with the hospital grounds, amenities, policies, heads of departments, etc. If there is a problem, you need to know whom to contact, and if you need to find something, it helps to know the grounds. Also, if you need a break, it would be helpful to know if there was a gym, lounge, restaurant, garden, or other facility you could use.
10. Keep your sense of humor and sense of self. Do not be afraid to laugh. This new normal is hard. Sometimes laughing and making light of things helps it feel more acceptable and okay. Also, it really helps to remember that your loved one is still the same person. Keeping your sense of self and treating your loved one the same will help the adjustment.
Best of luck!
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