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Lessons Learned from Caring for My Husband

25 Mar

Question:

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

Tom

Dear Tom,

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: 

  1. 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.

  2. 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.

  3. 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.
     
  4. 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.

  5. 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 excellent help.

  6. 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 clueless people.

  7. 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.

Best Wishes,
Belleruth

Belleruth Naparstek

Psychotherapist, author and guided imagery pioneer Belleruth Naparstek is the creator of the popular Health Journeys guided imagery audio series. Her latest book on imagery and posttraumatic stress, Invisible Heroes: Survivors of Trauma and How They Heal (Bantam Dell), won the Spirituality & Health Top 50 Books Award