Advocate of Angels
Advocate of Angels
Advocate of Angels
January 15, 2011
(a caregiver's cheat sheet)
I was motivated to put together a cheat sheet on some things I have recently been forced to learn. I don't know how useful this will be, but here are my thoughts, in no particular order. And keep in mind that this is a man's view, so feelings are sometimes optional.
I honestly don't know how some people do this alone. I truly believe that people can die from falling into the cracks. As well-intentioned as our doctors, nurses and medical institutions are, there are wide cracks that patients can fall into where they suffer in some lonely solitude, waiting for a phone call or a prescription from an overloaded medical professional who, in their own human frailty, forgot, or never wrote.
I function as Carole's advocate. I force communication between doctors. I build a team. Receptionists know my name. Pharmacists and their staff ask how Carole is when I pick up scripts. Even nurses, technicians, on-call doctors, nurses’ aides, anyone who becomes a part of Carole's care for more than a few minutes is brought up to speed, and is made to feel a part of the treatment. There is no one of insignificance in my wife's treatment. I try to show respect for their expertise, and in return I get their best efforts.
You have to have mercy on doctors. They've spent 12 years of their lives in school getting an MD. As much as they may have a compassionate world view, they only know what they treat, not who they treat. It is up to you to teach them. Speak for your spouse. You'd be surprised at how stoic some people get in front of a medical professional. Tell the doc what YOU saw and HOW she really felt. In many cases, it's the only honest thing the doc hears in the appointment, especially early in the diagnosis stage.
Guys, when you married your spouse, you didn't just take her hand in marriage, you got her whole Barbie collection. There is the Happy Spouse Barbie, the Angry Spouse Barbie, the Shy Spouse Barbie, the I Want to Fight Barbie, the I'm Ready to Kiss and Make Up Barbie, etc. We only have a fighting chance when we recognize which Barbie we're dealing with and act accordingly.
None of that valuable experience helps in this situation. There is no Barbie for this. You will see your wife, perhaps for the first time, as the naked, vulnerable soul that she really is, and your only purpose in life from that point on is to protect her.
I'm serious. When you actually see how fragile this woman really is, you are born again. You become a new being with a single purpose. You are part warrior, part defender, part comforter, part student, part nurse, but fully focused on one thing: her.
And keep in mind that this new being you have become is disposable. You were designed to survive wounds and stress you never imagined you could withstand. You don't have armor, but you now have the ability to shed your skin and keep going. Rest for her is recouping strength and healing. Rest for you is optional.
You have no idea how much strength is inside you. Take my word for it, when you need it, it will be there.
Build a wall around her. Filter who gets in, how long they stay and what they say. Don't allow opinion, speculation or ignorance to weaken her. I don't care how well-intentioned someone is, I don't want my wife wasting energy listening to miracle cures, trendy diets or local shamans. There is a door to your house. Feel free to use it at this time. Lock it when they leave.
Keep everyone informed with the least amount of energy used by you. Sorry, individual phone calls are out of the question, there are just too many people to update. I use an email list, one email that sends the same message to everyone. If someone doesn't have email, then so be it. Ask someone on the list to keep that person informed; your energy needs to be focused on one, not many.
Her care is not an example of democracy in action. Listen carefully and then decide. When it's their turn, they will understand. Or not.
Manage the meds. She honestly doesn't remember that she took her pills two hours ago. All she knows is that it hurts.
As much as it may pain others, only you understand her most intimate communications. The brave face she puts up for friends and family is just a mask, and only you can see through it. Don't ignore what you see. Get her to sanctuary, even if she protests. Sometimes she buys into her own bullshit and denies to herself how much it hurts. Take the beating later, but get her the hell out of there now. She will only suffer more the longer she stays. And hurting someone else's feelings in the process of escape is collateral damage, acceptable loss. Don't try to save everyone, just her.
Your tears are worthless. They don't solve anything; they only undermine the strength and trust your spouse sees in you. If you have to (and you will), do it on your own time and in your own space.
You don't need to be strong in every moment, just this moment.
The picture at the top of this post is my wedding ring.
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