As a parent, being diagnosed with a serious illness and facing intense and aggressive treatment is not only devastating news...it's downright inconvenient! There is so much we do to keep our families happy, our houses running...who can replace us? We have big shoes to fill, all the more reason to think positive, stay strong, and focus on getting healthy and well again. For my bone marrow transplant, I had to leave my home and rent a small apartment within 5 minutes of Boston Medical Center (sure, *that* was in the budget...NOT). It was tough enough knowing I'd have to be apart from Jason for 1-2 months, but now I had to make sure things kept running at home as I prepared myself to move as well.
Once I had processed the news of my diagnosis and treatment, I prepared myself for the hardest part: asking for and accepting help. I found this incredibly difficult, as I took pride in being a mom who did it all; taking care of my house and family, volunteering in the community, while still squeezing in some time for myself. I had no other choice but to rely on my friends and family who were only too willing to assist in any way possible. As uncomfortable as this was for me, I only had to look at Jason to know that I was doing the right thing by graciously accepting the generous and selfless offers of assistance extended to me.
I was very fortunate that in addition to having my own family nearby, my mother-in-law, Susan, was able to move in and keep Jason's daily routine going without interruption. Not every patient has this support; had family not been available, I may have had to find good friends willing to add another munchkin to their brood (then I'd have to worry about getting him back! J). One thing's for sure; most patients receiving treatment for a serious illness are not physically up to the tasks they normally perform, so even if I had been able to stay at home, I surely would have required help until I was strong enough to do things on my own.
At the time, I wasn't working outside the home, but had I been I would have needed to take a medical leave of absence. Even Steve had to make special arrangements with his boss to work remotely, since he was required to be with me for the duration of the treatment. Every diagnosis carries a different treatment protocol, and often a patient can remain at home, and even continue working, but for now I'll share the tips that worked for me during my personal experience. Whatever your particular situation is, here are a few of the strategies I used to keep myself, my family and my home organized while I was gone without missing a beat!
1.) Plan ahead: Schedule the kids' doctor, dentist and haircut appointments (perhaps one more mani/pedi/massage for you?), purchase birthday presents and attach the party invitation to them; shop for new sneakers, camp gear, whatever the kids will need while you're in treatment. We hit BJ's and stocked the house with paper goods, toiletries, pantry items and lunch box staples.
2.) Keep 'em busy: I wanted to keep Jason's routine as stable and familiar as possible. I set up a few weeks of day camp, swimming lessons, and he continued his taekwondo program. I also sent out an "SOS" email to my closest friends and arranged a couple of play dates each week for a month or two after I expected to return home. Next to every appointment I included the name, address and phone number of where Jason would be. Once I had Jason's schedule set, I printed out three copies: one for me, one for my parents, and one for Sue (which I put in a 3-ring binder titled "Nana Sue Control Center").
3.) Find a body double: A stay-at-home mom really doesn't stay at home-we stay in the car! To make things easier for Sue, I arranged as much transportation with family and friends as possible, and tried to create a predictable routine for Jason. So for example, my mom would bring him to taekwondo every Monday, or the same friend would bring him home from camp every Tuesday. I filed this schedule in the "Control Center". Don't forget to tell teachers and instructors who to release your child to on which days.
4.) Create a manual: Whether your partner, family member or a good friend is helping out with the house and kids, it's a good idea to put together an Instruction Manual. Outline the morning routines, typical meals and snacks, favorite lunchbox items; who gets vitamins or allergy pills and when; what do the kids wear to dance, karate, soccer, lacrosse? What time are meals, baths, bedtime? What's the homework routine? The more the routine stays the same, the better. Don't forget to include a list of emergency numbers such as doctors, dentists, neighbors and favorite babysitters. List phone numbers for school, camp and other activities in case of absence.
5.) Cook and freeze: I did as much meal prep as I could before I moved to Boston. One weekend, my college roommate came over and we made quiches and chicken pot pies all day to stock the freezer. I gathered some favorite family recipes, shopped for all the ingredients, then spent a weekend cooking and packaging them for the freezer. Another great tool I used to stock up was Dream Dinners. I simply went online, scheduled a session and chose my entrees from the menu. Then I went to the store and assembled all of my meals for the freezer. However, defrosting and cooking every night for a month or more can take a toll on any caregiver, even if it is a devoted family member. I was incredibly touched by the generosity of our friends, as well as those of my sister's whom I had never met, who offered to bring over meals several times per week for Sue and Jason, as well as for the four of us once Steve and I had moved back home. I found the best way to coordinate this support was through CareCalendar. I set up a calendar and shared the personal code and password with all of those who offered to help. Not only could people just click on the day they preferred to drop off a meal, but we were able to log on and find out what was for dinner. Brilliant!
6.) Stock up: Treatment days can be long...and boring. I chose to look on the bright side and view this month time away as a mini-vacation. I didn't expect to feel all that well, but what better time to catch up with those books and movies I'd been intending to get to? I borrowed books from friends, and a bunch of girls made me a list of their favorite movies. I downloaded some soothing "spa" music to my IPod to help me relax during procedures.
7.) Delegate: In the weeks before I moved to Boston, I started training Jason to be a bit more independent. I encouraged him to dress himself, clear his spot at the table, pick up his toys and put his dirty clothes in the hamper. He was only 4 years old, but children of any age can learn to help fold laundry, put it away, empty the dishwasher, get the mail, or feed the fish. And the great thing is, they continue to do these tasks once you are well again! I took advantage of a grocery delivery service, and asked a couple of great kids on our street to come over just for an hour here and there as a "mother's helper". Doing too much too soon can delay your healing, so don't overdo it.
8.) File it: Nothing creates paperwork like a critical illness. I figured out pretty quickly that I was going to have to find a way to organize all of it. I purchased a portable file box and filled it with hanging files and folders. I created tabs for health insurance, prescriptions, medical receipts, nutrition information (I had to follow a neutropenic diet), lease agreement, treatment calendar, etc. Even after the treatment is over, the paperwork keeps coming, so this is a good system to put in place early.
9.) Start fresh: Any chemotherapy regimen can compromise your immune system, and after my bone marrow transplant, I wouldn't even have one. I tossed all of my cosmetics and purchased new mascara, lip gloss, eyeliner, as well as new makeup brushes and sponges. Don't forget razors, nail files, and toothbrushes as well.
10.) Stay in touch: Whether you blog, post, tweet, or update, everyone who cares about you is going to want to keep up with how you're doing. I chose to stay in touch with a simple email. Set up an email distribution list with all of your contacts (you can even give it a fun title with a good vibe like, "My Fan Club", or "Healthy News"). If I wasn't up for writing, Steve could send an email easily by clicking once on the list. I recommend selecting the list in the "BCC" line to avoid sharing everyone's email.
I hope you enjoyed this article. Just in case you missed it, here's a link to last month's newsletter: