Lessons Learned from Caring for My Husband
I have attended a couple of your programs. At the one in Virginia and the Washington DC area, you mentioned some tips for the caregiver for your loved one with cancer.
It was a listing of 'helpful hints' for people/family who are impacted by the diagnosis of life-threatening cancer - i.e. setting boundaries with others who want to share their story...etc.
Would you be so kind as to repeat this? As an oncology nurse manager, I have to assist the caregiver as well as the person with cancer during this process, and I thought what you were speaking about would be a help to them and their journey.
Thank you and be well
Seems to me a lot of attendees at that conference added to that list, so this won’t be as comprehensive as what you heard in Alexandria. But here’s what I started out with:
- Don't assume your providers are offering you the best options for
treatment. You'll want to believe in them, because you're so
vulnerable, but please double and triple check the protocols and
information you're getting, even if the healthcare institution thinks
it's the best in town.
- Use whatever contacts you have to get the most up-to-date
information possible. The landscape of cancer treatment is radically
changing by the minute these days. There are now many new,
multi-targeted treatments that, when used in combination, can beat or
improve what was thought to be impossible odds, and a lot of
well-meaning providers don’t know about them. This means you have to be
proactive at a time when you feel like collapsing. My advice: get
cracking; don't collapse. (We wound up taking advantage of the
considerable talents of health writer Henry Dreher, a cancer guide who helped us research the options and made sound suggestions; and we went to The Block Center in Evanston, Illinois for invaluable consultation on nutrition, supplements and off-label drugs that eased symptoms enormously.
- Think outside the treatment box, especially if you know standard protocols have limited success rates. You can tell your doc that you've read the
stats and you want more than just standard care. If that's not an
option, ask if he or she will serve as local backup while you go
elsewhere for more cutting edge care.
- Be really clear with friends and family, what you need from them and
what you don't need from them. Again, it's not fair that you have to
do this at a time when you have no energy for it, but, trust me, the
price of NOT doing it is too high. If you want visits and calls and
cards, tell them. If visits, cards and calls feel like an assault, tell
them that. If they insist, tell them "It's out of the question". And
let your kids and siblings and friends help out. There's no better
resource, and they'll feel good about contributing. It will also deepen
and enrich your relationship with them.
- Also, be smart about asking people to do what they're good at. Some
friends are great listeners. Others are terrible listeners but great
cooks. Still others have a talent for efficient errand running, or
internet database searching. They'll be glad to have an assignment they
can actually perform well for you, and you'll be very glad for their
- When people start giving you unwanted advice, or sharing their own
cancer story with the hideous outcome, or guilt-tripping you about how
you're not meeting their needs, you need to be at the ready with a firm,
fast response: "That is not helpful" is a good one, as is "I don't need
to hear that right now", or "We need to change the subject"... and,
always, my favorite, all-purpose standby, "That is out of the
question". Again, you're not going to be in the mood to be this
assertive, but fake it. It's necessary protection from well-meaning but
- When in doubt, ask for prayers. I believe they are felt at some subliminal level by the giver and the receiver alike, and, who knows? You might get a miracle. At the very least they give people something proactive and heartfelt to do, at a time when they feel disempowered and helpless.