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.

Friday, July 1, 2011

July Baystate Parent Magazine

Whether I'm working or just working out, every time I walk into Global Fitness Center in Stow, there's a stack of Baystateparent Magazine right by the door.  Every month I love checking out the great articles which cover various parenting issues, health/nutrition topics, current local events, newsworthy moms and tons of resources for things to do with the kids.  Not to mention there's always an *adorable* little cover "model" on the front cover!  This morning I picked up my new July issue and there on page 13 was the color cover of my book with a nice little mention!  I was honored to be recognized by BSP, voted Best Parenting Publication in North America for 5 years.
So if you followed the link listed in BSP and are visiting my blog for the first time, welcome!  You might want to start at the bottom (beginning) to learn a bit more about me, my story, and how WDMSG? came to be written.  The book is based on my own personal experience when I was diagnosed with a serious health crisis right before my son's 4th birthday.  Because my particular disease was quite rare, there were no children's books out there for me.  In order to prepare my son for what was happening, and minimize his fear and worry, I created my own story, comparing myself to a weakened superhero to explain why I was sick, and why I had to leave home for a while for treatment.  My truthful, but upbeat story worked so well with Jason, and he understood it so clearly, that I decided to write a non-disease specific book for other children coping with a critically ill parent or family member.  Actually, WDMSG? is especially useful for families who are diagnosed with those less-known diseases which receive little awareness, attention or recognition, and therefore have very few resources available.
If you or someone you know would like a copy of WDMSG?, you can get a "sneak peek" inside the book at  For those of you who live in the Acton/Maynard/Concord/Sudbury area, the book is available at Willow Books and Cafe in Acton, as well as at the Acton, Maynard, and Sudbury branches of The Paper Store.
Please feel free to share your thoughts, comments and feedback, I welcome any critique you have to share!  To see what people have been saying about the book, please visit the book's page on Amazon and  Whether you wish to give the book 1 or 5 stars, all reviews are incredibly valuable in helping the book "pop up" when people are searching for a positive, upbeat story to help explain a grown-up's serious illness to young children, which does not specify any particular disease, diagnosis or treatment.  I hope to hear from you!
And if you haven't already, be sure and pick up your own FREE copy of Baystateparent Magazine!