I've long fancied myself an amateur pharmacist. Back in the early 90s, I even bought myself a copy of the PDR at the DeAnza flea market. I always want to know why something is prescribed, how it interacts with other medications, the best way to take the medication, side effects, ways to minimize side effects...all that stuff. Who knew how handy that little hobby would become?
Now I use two iPhone apps to manage Bob's chemotherapy and medications. One is called Epocrates. It was recommended to me by a pharmacist/friend. The other is called iChemo Diary. Epocrates is much like a PDR. I can use it to look up medications Bob is prescribed/administered. It allows us to ask informed questions from our medical professionals and more than once we have been complimented on being well-educated about his treatment. As one doctor said, Bob is the one person who will always be present when a medication is administered. It's key he know what he is being given and why. The diary application allows me to keep a record of the medications and chemo drugs Bob is given along with his symptoms each day. A record of this information can then be emailed if needed.
If you don't have an iPhone, get a notebook, write this stuff down. Ask questions. Ask to talk to the pharmacists, even in the hospital. I did. You can. You have hired these professionals to work for you. They are typically quite good at what they do and happy to answer your questions.
Dressing changes, injections, flushing IVs -- these will become
second nature to you. You'll be afraid. Trial by fire works best. You do
it because you have to. That's a pretty compelling reason to get shit
Master Delegator (As opposed to a master-baiter...fish on your own time)
You may suck at the daily household chores, but you can delegate like a mofo. Do it. I do. It keeps us sane. Well, as close to sane as we get these days. Our laundry is done. Our house is clean. Our fridge is full. Our kids are cared for.
These are things you can do for yourself, but they are also things that other people can do for you and often want to do for you. My laundry doesn't need me to do it. It's just as clean if someone else washes it. My kids are much happier playing with their cousins or hanging out at their grandparents' house. They have enough unfun stuff going on in their lives right now. Wherever they want to be that gives them joy, that's where they will be. Flexibility is the name of the game.
Everybody who knows me knows I love doing research. This helps us show up to appointments informed, ask relevant questions, and explore options for Bob we might not otherwise know about. If you aren't comfortable doing research online, ask around. Somebody you know will help you. Librarians love doing research. Most of us geeky internet people love it, too.
Therapist and Professional Grown Up (Or at least have the costume so you can fake it til you make it)
You'll need to seek professional help, but you'll also need to provide it at times. Your husband may need your amateur armchair psychology skills, but what I'm talking about here is the kids. Supporting my spouse hasn't thrown me for the kinds of loops that supporting my kids has. My kids can drop me to the floor.
Your kids will need your help in the middle of the night, in the middle of the day, without warning, and in the oddest manifestations. You need to be ready. You might think your teen just has his head up his ass, but in fact, he's stressed about the fact that his father is at death's door and he doesn't have the words to express it. You have to be ready to set your own grief aside, set your own exhaustion on the back burner, and take one for the team. In our case, this is made more intriguing my our son's special needs (Asperger's and Tourette's Syndromes).
When your tween needs to hug you for the hundredth time, needs another horseback riding lesson and you don't know where the money is going to come from (but you know it is her one sanctuary), you will find a way to provide because she is a child and you are an adult and that is your role in this deal. You are the grown up. She is the child.
You do it because you love them more than you love yourself. When our children look back on this time in their lives, the one thing we want them to remember, above all else, is that they were surrounded by love and laughter.