One of the things I never realized when Boo and I began this journey was the need for support. At first, I thought I was invincible. Nothing that Boo, his doctors or home health care threw at me was too difficult. I could do ANYTHING. And I could do it alone, without anyone's help. After all, wasn't that part of being a wife? Part of “in sickness and in health”?
Well, that didn't last too long. I caught a virus and crashed. Suddenly my I-don't-need-any-help attitude didn't seem so realistic anymore. In fact, getting out of bed to prepare a can of soup didn't seem realistic either. Fortunately, my rescuing angel came in the form of a determined coworker who brought us a meal. OK, really she brought me ginger ale and oyster crackers and a meal for Boo. She also set up an informal daily round of friends to check on us and help with daily necessities---whether I wanted help or not. I'll always be grateful that she stepped in with help I didn't think I wanted and pushed me to accept what I so desperately needed.
I began to better understand our need for friendship and support. Still, my vision of what friendship looked like was no longer workable for us. Going out for dinner and a movie, having friends over for a meal, spending the day shopping or at a street fair...none of those familiar activities were even a remote possibility. Our lives had changed and I needed to adjust my expectations. That was a very difficult time for me.
The face of friendship has evolved for us. The phone and the internet have become integral parts of our daily life. Instead of spending the day shopping, I frequently get emails from a few friends with coupon codes or special online offers. (Did you know that Wal-Mart and Amazon usually offer online coupons and free shipping on items we routinely use for Boo's care? Definitely good for the budget and a time saver too!) A quick ten minute Face Book chat with a friend over coffee brightens my whole day and gives us both a mini break. Boo finds it easier to talk on the phone than to meet a friend for a meal. Most days he finds it difficult to tolerate the visual and audible confusion in stores, restaurants and other public places. I've come to realize that even though we are more home bound than I would like, avenues for friendship abound.
Besides friendship, Boo and I need other types of support. One resource that I've found extremely helpful in the last nine months is email contact with Boo's doctors. The particular practice he uses has an website that allows us to access the results of his medical tests, his general information and to email questions to his doctor. We've received amazingly quick responses to most emailed questions. Sometimes an email response is sent, but usually we receive a phone call. This service has eliminated unnecessary office and emergency room visits and has resulted in better care for Boo.
One area that has been lacking is information about the realities of day to day caregiving. Through books, tips from home health agencies and other medical professionals and trial and error I've cobbled together a workable life. It just doesn't seem like enough. I know there are excellent courses available, but leaving Boo to attend one isn't an option. Yesterday I stumbled across (or was led to) a website that either offers many of the resources I've wanted and needed or have links to places that do. Catholic Caregivers is an answer to prayer. Thanks so much to the Dodds for all the work they've done in preparing this wonderful resource.
Thank you to everyone who has been so wonderfully supportive and understanding of us during this part of our journey, who have truly held us up!