Monday, July 4, 2011

5 Tips to Care for the Caregivers

A few weeks ago I had my annual evaluation at Boston Medical Center, which involves three days of tests and consultations with the medical team.  Steve accompanied me each day, just as he has done every year since my initial diagnosis in 2007.  In fact, it seems we’ve been “doing this drill” for so long that we’ve found ways to make it enjoyable and as strange as it sounds, we actually look forward to the time together! 
Every year, no matter how good I feel, I can’t help but feel a bit apprehensive; no patient wants to learn that remission has turned to relapse.  While I can’t keep this thought from entering my mind, I do choose not to dwell on it, and Steve is great at helping me stay positive when I start to slip.  Fortunately, this year’s results were excellent, and I attribute much of my healing and recovery to Steve’s unwavering strength and support over the years. 
When I broke my leg in 2006, not only did I need help at home but I couldn’t drive.  Steve picked up the slack (in addition to his long work hours) without missing a beat.  During both stem cell transplants in 2007 and 2008, he was amazing.  Every morning he packed a bag of food for us to take to the clinic, and he was in charge of dinner most nights (he even gave up sushi while I had to adhere to a neutropenic diet—now *that’s* devotion!).  He did the food shopping, errands, covered my catheter site before every shower, kept all of my prescription bottles organized and made sure I got all of the correct medication at the right time four times/day…all while continuing to work remotely.  He was by my side every minute, which was lucky for me when I passed out in the BMC parking garage…he caught me before I hit the concrete.  Steve never lost his sense of humor and always found a way to make me laugh even at my worst moments (I think Steve must have played with every item and inflated every surgical glove in every exam room I was in).  He allowed me to whine when I was feeling miserable, cry when I needed to, complain when I felt like it, and vent my frustration.  Not only did I have a lot of extra weight and swelling due to the edema, but the steroids put weight on me as well, and combined with the loss of my hair, I never felt more unattractive in my life.  Steve never flinched at my changed appearance, and was just as cuddly and affectionate as usual.  At my worst moments, Steve continued to make me feel as beautiful as ever, and tell me how much he loved me.  Even at my lowest points, Steve kept my spirits up, reassuring me that this would all soon be behind me.

Just when we thought the worst was over, I found out the medications used in my treatments had caused a degenerative bone condition in my hips.  In 2009 as my hips got worse, Steve once again had to pitch in more, and in addition to his own busy work schedule, had to take on more of my responsibilities with the house and Jason.  That year I had a total of four hip surgeries; two in an effort to preserve my hips, and when those failed, two more surgeries to replace them both.  Steve spent so much time at Boston Medical Center that one day in the elevator he said hello to a familiar nurse, and she replied, “Hi, nice to see you!  Remind me, what department do you work in?”  Steve knew then that the two of us had spent WAY too much time in the hospital!
I spent the early part of 2010 recovering from having both hips replaced.  As my mobility improved, I was able to take more tasks off of Steve’s plate, and he was gradually relieved of his duties.  Now our lives are about as close to normal as they’ve been in a long time, and I attribute much of that to Steve’s commitment and devotion not just to me, but our marriage and family. 
I was incredibly lucky to have such a supportive partner during this challenging time, especially because I know for a fact that there were many times when I was not the easiest patient!  I was emotional, depressed, frustrated and impatient.  It was very hard for me to see Steve have to do my jobs in addition to his own, and I often felt guilty that he was “stuck” with the extra burden of caring for me.  But Steve never complained (although he may have told me to “put a sock in it” on more than one occasion), or lost his sense of humor (“no Steve, I do *not* need a sponge bath!”), and never let the circumstances take away from quality time with Jason.  I am still in awe of how he balanced it all so well.

Whether your primary caregiver is a spouse, a sibling, a parent, an adult child, or a team of friends, it is never easy to be on the receiving end of so much help, especially if you’re a mom--*we’re* supposed to be the nurturers and caregivers for everyone else!  Accepting the help is like putting your oxygen mask on first—in order to heal, you need to put your health on the top of the priority list.  Caregivers complement our treatment protocols; consider all that extra help an essential prescribed medication necessary for optimal healing.  Without our caregivers’ generous and selfless support, how can we expect our medication to have maximum effect?  Their care and companionship helps our bodies and minds relax and become more receptive to treatment.  While you’re working on getting better, here are a few ways you can honor the caregivers in your life:
1.)    Remember to check in:  As the patient, everyone will constantly be asking “How are you?  How are you feeling?”  Once you’ve answered, suggest the person check in with your caregiver and ask them how they are doing, and if there’s anything they may need.
2.)    Give them the tools:  If your caregiver is doing a lot of cooking they may not be used to, provide them with some easy recipes or suggestions.  I had a lot of time to rest and read, so I flagged simple recipes in cookbooks, or tore them out of magazines.  If I had the energy, I made out the shopping list for Steve, so all he needed to do was follow directions.  Create lists of essential phone numbers so your caregivers have information in one place.
3.)    Keep a list:  If you have friends assisting you, keep track of who is doing what (perhaps one friend is picking your kids up at school, while another one is doing your grocery shopping, and a third is accompanying you to treatment).  When you are well enough, you can write thank you notes and find ways to reciprocate the favor.
4.)    Give ‘em a break:  This is SO important—full-time caregivers need a well-deserved respite to recharge and rejuvenate.  Make sure that you both agree on how and when your caregiver can get away and have some free time.  Since I needed someone with me at all times during my transplant, my parents would come into Boston on the weekends so that Steve could go home, spend time with Jason, sleep in, and go out for a beer with the guys.  I was happy, he was happy, and my parents enjoyed a “weekend sleepover” in the city with me.
5.)    Find support:  There are plenty of support groups for patients, both in the form of meetings as well as online email groups, but caregivers can benefit from their own helpful network.  Check with your medical facility for support groups and services specifically for caregivers.  Here your spouse, partner, family member, adult child or friends can openly communicate their feelings about what’s happening, share any struggles they may be facing, and hear how other caregivers are coping.


  1. Jen, great memory! You're very inspirational to me, and I'm just hoping I have your perseverance and motivation as I struggle through my recovery. In today's world, we all try do get things done "yesterday", which makes us use our skills too cope with life and make daily progress towards survival. Although our injuries are different, we both have biological issues out of anybody's control. Keep doing what I've seen you do for yourself and your family, while continuing to be a positive influence on me and mine! Thank you.

    Best always, Paul Giunta Jr.

  2. Jen, our spouses are INCREDIBLE caregivers. I know I wouldn't be alive today without Renee, and I'm sure you feel similarly about Steve. Although marriage is a tough challenge for anyone, it gets tougher when you go through an injury or recovery like ours. My Traumatic Brain Injury and physical disabilities are different than your problems, but we share the same communication hurdles our friends and family take for granted. Not only do we have to relearn how to be "normal" again, but our spouses have to continue accepting who we are, and working with us to make sure our children don't take anything for granted. We have to live positively one minute at a time, because we might not be alive an hour from now. Never, never, never give up!

    Best always, Paul Giunta Jr.