Things I Know (but wish I didn't)
Ever wake up in the morning, think of some of the things on your caregiver to-do list...and wish you didn't even know some of those tasks existed? I have. I do. I wish I didn't.
Whether it's trying to communicate with a father who refuses to recognize his lost grip on the state of his finances, struggling with a mother who can't admit to her failing memory or trying to bathe a wife so weakened and in pain that just getting to the shower was a well-orchestrated event, I've done it all.
So many caregivers learn about their loved one's disease and medications, how to talk to the healthcare team to find out what they need to know, what to do about the developing financial mess, and where to find professional assistance when necessary. We also learn about nutrition, mobility and memory-jogging for those who need it. And all that's fine and good. But there are other things we have to know to be truly effective caregivers. Here are some of the things I've learned:
Know what you're going to say before you say it. There are a few reasons for this. First, it will help you get your message across and be more quickly understood. Second, it helps you say things calmly and respectfully, avoiding or reducing argumentation. But, most important, it'll help stop you from saying something you'll regret for a very long time. I must admit to having fallen into the trap of unpreparedness and letting fly some horrible, irretrievable statements as a result of caregiver exhaustion and frustration. Trust me, you don't want to do it. Even if your loved one forgives you for saying those things, you might not ever forgive yourself.
Ask for help. Call me stupid. Call me falsely proud. But for some reason, asking for help was among the hardest things for me to do. Did I want to avoid others' seeing me as weak or inept? Did I have an ego so big that I thought no one could handle any task as well as I could? Was I embarrassed to ask a favor of another for some misplaced perception of future indebtedness? Did I simply not want to bother another with what I perceived as my problem? Could it be I didn't want others to see the deteriorating condition of my loved ones to preserve their pride? Whatever the reason, it was the wrong one. Asking for help is not something for which you should feel ashamed. Rather, it's something of which you should be sincerely proud. Other people really can do things better, sooner, easier, and in ways that reduce stress in your life—and that of your loved one.
Accept your fears. Countless were the days that I would get off the train to New York City and start walking to my office for another day's work when my brain would be bombarded with thoughts about whether my wife—ill and in bed—would be alive when I got home at day's end. Not a school day would go by that I didn't call the house at 2:55 p.m. to make sure Lynne would pick up the phone. I needed to know she was still alive so that our daughter, Gillian, wouldn't walk into the house at 3:05 to find her mom dead. That was a big fear. But there were other fears. Would I hurt Lynne when trying to get her in or out of her wheelchair? Would I misunderstand a doctor's instructions? Would I have the patience to get through another day? Would I let my exhaustion get the best of me and explode in a frustration-fed rage? All those things happened. And we all survived it. Sometimes, not happily. But we all grew to understand that these were extraordinary circumstances and we would not get through them in ordinary ways. And I learned that if I could face my fears, I could allay my fears. Sometimes, not completely, just sufficiently enough to get to the next day. And, sometimes, that's enough.
Find the joy. You're scared, overburdened, unsure of your decisions or abilities and watching your loved one in failing health. But, no kidding, there's a bright side. There is an emotional development that caregiving can bring about, if you let it, that is like none other. You just can't lose sight of it. Open yourself to the possibility of it. Share the secrets of your soul. Observe the thanks that is in your loved one's eyes, if not in his or her words. Don't get bogged down by the petty. Cherish the moments of closeness you share. They don't come easily and they won't come again. So don't let them escape unnoticed. Don't miss the love that is behind your decision to be a caregiver.
Set the rules. Basic question for setting the primary rule: Who's in charge here? Basic answer to that question: Not the disease! You need a leader for the caregiving team. Likely, that's you. After that, caregiving can be similar to Australian football. Rules? We got no rules! You do what you must, when you must, as best you can, for as long as possible, demonstrating as much respect as can be mustered. But the rule you can't forget is that covered in the next item. Summed up, it's this simple: You come first!
Take care of number one. By the time both my wife and father died eight months apart from each other, I was in bad shape. Oh, it had something to do with the emotional toll that had been taken on me, and certainly I was in a pathetic psychological place. But the biggest problem is that I had let four years go by without my getting a physical check-up. I was always making sure my wife made and got to her appointments; hell, I joined her for almost all of them during her last two years. But I did nothing to protect myself. Finally, I went for a physical a few months after Lynne passed away. I went to the same doctor she had used. He told me I was overweight, a borderline diabetic, had elevated cholesterol numbers and high blood pressure. "You're all your daughter has left," Dr. Hoffman said to me. "If you don't want her to be an orphan, take care of you. And start now." He put me on the straight and narrow. He made me realize that, even though others thought I was a great caregiver based on the attention I bestowed on my father and wife, I was, in fact, a failure at caring for my most important care recipient—me! Go to the doctor. Eat right. Exercise. Take "me" time. It just won't make you feel better, happier and more energized. It'll keep you alive.

