Saturday, October 26, 2019

The Carry-on Bag for the Caregiver


When you become a caregiver for someone with cancer you need to prepare yourself for the role. 

You have logistical work to do, of course: calendars, credit, insurance, benefits, appointments and medication reconciliation. 

And you have emotional work to do: Fear, worry, love, and the biggie: boundaries. If you are the caregiver for an adult patient you don’t want to be parental, but you will likely need to be responsible. 

You’ll need to separate your feelings from theirs and have your own support team when you cannot turn to your partner to be your support while you are caring for them.  You may have depended on your partner to help you through hard times in the past, but when you enter CancerLand, your partner’s illness becomes the hard time. 

Your partner may have been the one who managed the logistics of your life: cars, money, credit etc. And your loved one may be very competent in these areas but once chemo begins or the impact of other meds like pain killers you will—temporarily—lose that competent partner. And the distraction factor is huge: “Am I going to die?” can undo the most fastidious financial manager.

So, caregiver—you are now in charge:

Get every account number and password in one place. 

Get copies of the medical power of attorney and have two copies with you at all times. You’ll need to hand it over again and again. Just because you put it in the medical record last month doesn’t mean it’s still there.

Get a limited Power of Attorney for all things non-medical as well. There may be things you need to transact on behalf of your partner, or documents you need to see—medical and non-medical and you’ll need that Power of Attorney to graciously make your point.

Start your caregiver notebook immediately—if the diagnosis was slow to arrive you may not have written down every little thing—so back date a few pages and fill in all you can remember: dates, ER visits, doc appointments. Then keep this notebook in your caregiver tote bag (below) and always return it there. Don’t keep it on your desk or at work---you may need to rush to a hospital or jump into an ambulance and that tote bag is all you need to grab because it will have:

Your caregiver tote bag is your home away from home. Buy extra of everything mentioned here so you are not running around or borrowing from the bag. This bag is sacred. In the bag you have:

*Your caregiver notebook—not too big—spiral is great, but no three-ring binders—too cumbersome
* Pens and sharpies and a highlighter
*A written (paper) list of everyone’s phone number: family, friends, doctors, hospitals.

 (Yes, I know they are in your phone but if your phone doesn’t work, dies, isn’t permitted—you have the numbers) And people who might not be in your phone—your partners employer, doctor, best friends.
*A phone charger—a separate charger that only lives in this bag.
*A book to read in waiting rooms—like Goldilocks—not too hard and not too easy. A good book
*Magazines—there will be times you are too fraught to read a book and the magazines in waiting rooms are awful and old.
*Some spiritual or inspirational literature. Something to lean into that inspires and uplifts you. There are lots of nonreligious ones—a daily meditation book etc. There are several just for caregivers.
*Envelopes—for when you want to leave a note for a doc or nurse
*Nonperishable snacks—protein bars, packs of nuts, candy bars that cannot melt, bring more than sugar—a 30-minute appointment can become a six hour wait in a flash.
*Cash—yes, paper money and coins for just in case for phones, tips for the valet, coffee machine etc.
*A sweater or shawl that you keep in this bag. (Do not “borrow” to wear to work.) Waiting rooms and ICU rooms are cold—on purpose. And fear has a way of lowering your body temperature.
*The Healthcare Proxy (multiple copies) Have this conversation with family early—include his/her parents, siblings, ex-spouse, step kids. Be sure its legal and official and notarized. 
When your partner is sedated or unconscious or in the recovery room you don’t want the additional pain of  a family fight over, “He wanted…she wouldn’t want…I’m the husband…Well, I’m his mother.” One spokesperson. One proxy plus a backup.
*The Powers of Attorney—keep copies in the tote bag.
*Tooth brush and mini tube of toothpaste (in a ziplock)—Just in case you need to stay longer or just to refresh yourself mid-day
*Extra glasses and bring a case for your contacts.
*Have a copy of your partners driver’s license, birth certificate—copies only—you don’t want to lose the original documents, but copies can come in handy.

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