Help Me Help You

July 23, 2010 at 3:57 PM (Family, friends, Help, Karma, Treatment) (, , , , , , , , , )

Over the past couple of days I’ve answered a few cancer babes’ questions about their support teams. These ladies have been relatively new patients, and while dealing with their own fears and worries about their new diagnoses, they are feeling the changes in their relationships with their spouses, significant others, or family members. Reactions have ranged from anger, to cool distance, to hovering, to quiet resignation. They’re all okay, for initial emotions, but the reactions surprised the patients and added another worry to their lists. I’m saddened to hear of the insecurities they’re feeling, right when they need to feel safest and most secure.

In a perfect world, when we are diagnosed with a serious illness, our loved ones would rally to our side, offering support without need for recognition, organizing teams of ride givers, casserole bakers, and garden weeders while maintaining enough distance so we could rest and recuperate without concern. They would have easy and affordable access to support groups that give them the chance to vent their own frustrations and receive advice and affirmation from others who have been down the same path. Their emotions recognized and validated, they could be the supportive, understanding, flexible caregivers their sick ones need most.

Last time I checked, this world was far from perfect (really!), and being the perfect patient or the perfect caregiver may not be possible. But with support, understanding, and strong communication, we can learn to help each other through. I’ve put together a list of tips to help open the lines of communication, and a few resources to go to for advice or help.

  1. Ask each other how you’re feeling, what you’re scared of, and what you need from each other. Some people think the best way to support a sick loved one is by remaining stoic and swallowing their own fears. It sounds so simple, but sharing what you’re thinking about with your closest allies will not only help them recognize what they are feeling but also understand that you feel the same way. Make sure to see things from their side of the illness; while you’re worried about losing your hair and not being attractive anymore, they may be thinking about losing time at work, feeling like they have no control over the illness, or betrayed by your absence. None of these feelings is “wrong” – it’s only important to identify it and talk about it.
  2. Try to include your caregiver in decisions about your treatment, to give them a sense of having a little control as well as an opportunity to ask questions of your medical team (with your permission, of course). I know it was helpful, especially in the beginning of my disease when I felt like I’d been run over by a freight train, to have a family member at appointments and treatments with me to ask or answer questions that I had forgotten or spaced on.
  3. Diversify your list of helpers. I’ve spoken before about the priceless lotsahelpinghands.com – by giving others the chance to do for you you’re also lightening the burden on your chief caregivers. They need to live their own lives in addition to caring for yours.
  4. Recognize their efforts and make sure they get a break. As a recipient of numerous SpaFinder.com gift certificates, I am a big proponent of the extravagant pampering appointment: it’s customizable; it appeals to both genders, whether your hubs needs some manscaping or just a massage; and it’s something that most people won’t buy for themselves.
  5. Spend some time with them and don’t mention your illness. It’s so easy, like always discussing the kids with your spouse even on date night, to get pigeonholed into talking about cancer. That’ll just get everyone down. See a movie. Go out for dinner. Spend an afternoon loafing around the local bookstore. You had a relationship with this person BEFORE you got sick – maintain it and it’ll be there AFTER you get well.

While you’re laid up (and there will be plenty of that), spend a little time on the internet looking at resources to help you support your caregivers. Whether they’re joiners and would love to get into an IRL support group, an online forum, or would rather just read some helpful tips to get them through, there are plenty of places to look for more information. Here are some of the best that I’ve found:

  • American Cancer Society (www.cancer.org). There’s a whole section for caregivers, with tips for getting through and a section on finding local support.
  • American Association of Marriage and Family Therapists (www.aamft.org). Marriage and family therapists not only help couples with their marriages but entire families dealing with crises, traumas, and major illnesses. I chose our therapist from the list on this site based on his experience with young children. (He hasn’t met our kids yet, but knows our family well should I croak it and they need support.) Many therapists will accept medical insurance, and many carriers cover a certain number of sessions per year as adjunct treatment to your illness.
  • Ovarian Cancer National Alliance (OCNA) has a great online support community (http://www.inspire.com/groups/ovarian-cancer-national-alliance/). For patients, family members and caregivers, it’s an amazing group of people dealing with and supporting this disease. Post a question, ask for advice, or just kvetch about how crummy you feel – all comers are welcomed and supported with open arms.
  • And, for that matter, Inspire.com has online support groups for other cancers, too. Top-notch.
  • Gilda’s Club (www.gildasclub.org) has joined forces with The Wellness Community. With Clubhouses in cities all over (although, unfortunately, not mine) and now a thriving online forum, The Living Room, support is available for everyone in the family.

My parting thought? Talk. Talk to each other, about the easy stuff and the tough stuff. Talk about how you feel, what you’re afraid of, how you’d like to be supported. Be open to hear things you might not like; be honest about what’s going through your mind. Talk like it’s the last chance you’ll get. It probably isn’t, but there’s no time like the present. Cancer has certainly taught us all that.

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How To Help A Cancer Patient, Part I

January 19, 2010 at 8:00 PM (Family, Help, Treatment) (, , , , , , , , , , , )

When you first hear the words, “You have cancer,” instantly a million things pop into your head. If you’re like me, after the initial “Holy sh!t I’m going to die” comes, “Who’s going to run carpool this week?” or “Oh, no, my house is a disaster area and people will be coming over.”

Once other people hear you have cancer, they unfailingly end every conversation by saying, “Let me know what I can do to help.” But at the time, you can never think of anything, and then when you think, “Wow, I wish I had someone to walk the dog tomorrow…” you can’t remember who it was who offered to help (chemo brain). How can something so generous turn out to be such a royal pain?

Within about forty-eight hours of my surgery, my crack research team (read: family members with internet connections desperate to DO something) had located the best Gyn/Onc in the area for my case, researched the then-hot-and-trendy-new IP chemo protocol, sent Edible Arrangements, and hooked me up with a lifesaving website that would feature prominently in my treatment and recovery plans for the next three years (and may come around again).

Lotsahelpinghands.com is a website that allows an administrator (you? your BFF?) to set up a free homepage for the cancer patient and their family, friends, and supporters, who log onto the site and sign up with a password once they are invited to join. The administrator sets up “tasks” – events as simple as picking up drycleaning or running to the grocery store, or as complicated as making a meal with specific dietary requirements (not too spicy, the kids don’t eat tomatoes, etc.) and bringing it over to your house. The sky’s the limit; my administrator set up “daily laugh” tasks so people would send me email jokes, and people from my then-kindergartner’s class signed up to host playdates for him and his little brother. I had people weeding my garden, raking leaves and planting mums in the fall, and delivering more delicious dinners than any one family could eat in a month of Sundays, except Mr. Wonderful was involved so we ate it all.

The BEST thing about lotsahelpinghands (aside from it being free) is that it gives the overwhelmed family a way to pass off some of the crazy-lot of organizing that comes with the new regime. And the seemingly unceasing refrain of “How can I help?” has an easy outlet: sign up for the website and start taking on tasks.

The OTHER best thing about lotsahelpinghands is that it taught me to let go a little and lean on others. My family is so self-reliant (and Mr. Wonderful and I slight control freaks) that allowing other people to take over and fold my laundry was nearly painful at the beginning. But as my kids and I got more used to giving up some control so we had more time to be together as a family (especially important when it seemed there might only be a couple more years) I realized that it was one of cancer’s silver linings. My boys learned the value of doing for others, and we now are honored to pay it forward whenever we get the chance. The sense of community may have been more instrumental in my survival than the chemo.

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