There’s no guidebook giving instructions on how to be a caregiver. There are no physician consultations to tell you what the next step is in how to provide moral, physical, and emotional support to the person you love that has just been diagnosed with a possibly fatal disease. There are no rules about caring for yourself.
Having been a caregiver for nearly three years to my late husband, who was diagnosed at the age of 22 with stage III testicular cancer, I’ve been around the block. Here are five things I learned that I hope will help guide other caregivers in your heart-wrenching predicaments everywhere:
1. It’s okay to freak out for yourself.
You’re already freaking out for your loved one. That one comes naturally. What takes a little bit more consciousness and effort, is to allow yourself to lose it all, come totally unglued, fall apart… all over how this diagnosis is affecting you and your life. You’re a person, too. Yes, with needs. Your world just got rocked and while you’re busy holding it all together in support of your loved one, you forget how to let go and let your feelings matter, too. I’m here to tell you that it’s not just okay to allow yourself to feel and experience the magnitude of what you’re dealing with, it’s something that I encourage you to do, for your own sake.
2. No one, including you, really knows how to help you.
People mean well. Friends and family will offer to help in whatever ways they can and all you have to do is let them know how they can help. The thing is though, that you have no earthly idea what these people can do to help ease your pain or make your life easier. If you can figure out ways to allow these people who love and are worried about you to contribute, let them. Ask for dinners to be brought over on chemotherapy days so that you can spend the day in the clinic or hospital without having to worry about preparing a meal when you get home. Let someone know which closet you keep your vacuum and broom in and let them clean your floors while you go grocery shopping. Let that overbearing neighborhood mom who always seems to have it together take your kids for a play date — maybe letting her deal with your kids for a couple of hours for a change will take her down a notch or two. And if you really can’t figure out ways to let people help, don’t sweat it, because it’s not worth the added stress.
3. It’s normal to lose friends after a diagnosis.
Just like people don’t really know what the best way to help you is, people also don’t know how to react to the news you’ve shared with them. Cancer makes people uncomfortable, whether they mean to let it or not. Now that you’ve got your hands full with chauffeuring your loved one to doctor appointments, heading out in the middle of the night for last-minute prescription refills and learning an insane amount of new terminology, you’ve got no time left for lunch dates, mommy-and-me outings or long phone calls just to catch up. It’s not going to be an immediate priority of yours to keep the lines of communication open, but when your friends stop hearing from you they won’t realize that you didn’t even mean to stop calling. They’ll figure that you’re too busy, and you are, but they won’t want to bother you so they won’t call either… and it just cycles. They’ll check in on Facebook and read the blog that you keep to document your journey, but since you’re dealing with something they can’t understand, and you’re pretty hush-hush with them about the whole ordeal, it’s only natural that you’ll grow apart. Hopefully the bond that you had pre-cancer is strong enough to take the hiatus hit, and if it’s not, at least you’ve discovered who your real friends are.
4. You’re going to become extremely close with your loved one.
In my situation, this was one of the few benefits I saw come from my husband’s diagnosis. There were some ugly things that I saw happen to my husband, and his knowledge of my awareness led him to trust me more than he ever had. He knew that he didn’t have to feel shame or embarrassment around me. He knew that he could cry and I wouldn’t judge him. He knew that by smiling at me he was giving me all that I needed to get through that day. From a medical standpoint I knew him inside and out. There was nothing that his body did that I wasn’t fully aware of, and while it was rarely glamorous, I never minded because I knew that I was the only one he had allowed in this far.
5. When it’s all over, it’s going to take you a while to get back to normal.
Together, my husband and I went through numerous remissions and recurrences. During the times we thought we were finally free, we both wanted to jump back into life and pick up right where we had left off. It wasn’t always as easy as that though. We were both college students, and sometimes we were ready to go… in the middle of the semester. We both wanted children, but because of his treatments we were forced to proceed with in vitro fertilization, which was costly and time consuming and not at all in line with our desire to pounce back into a full life. When my husband died from his illness, I was pregnant with our twin girls and whatever “normal” I thought I could ever have in my life went right out the window. Fortunately, with some time behind me, I’ve found ways to enjoy life again. It’s taken patience and perseverance but I’ve achieved much of the normalcy I longed for when we were in the thick of our experience. There’s no rushing this process, dear caregivers, but if you trust that you’ll get there, you will. You know all about taking things one day, one appointment, one treatment at a time. Baby steps. You’ll get there again.
For more by Karen Sewell, click here.
For more on death and dying, click here.
Coffee. It’s another one of those foods. (Well technically, drinks.)
Just like the never-ending controversy surrounding the health effects of eggs, the experts can’t seem to make up their
minds about coffee, either.
(Coffee drinkers rejoice!)
What’s a health-conscious person to think?
Why This Conversation Might Be Irrelevant
To the 100 million plus North Americans addicted to their morning cup, this conversation may be irrelevant. Because of the one agreed upon negative effect: withdrawal. Caffeine dependency is a real thing. And we all know the effects of withdrawal are pretty nasty. Which means that all this science stuff — especially the uncertainty — isn’t likely to change anyone’s behavior. Same deal for the people who don’t already drink coffee. For them, it’s equally unlikely that the latest research will make a difference in their daily choice of beverage.
At the Same Time, I Know You’re Curious
Whether it affects your coffee-drinking behavior or not, I know you still wanna know: Is coffee good for me? Bad for me? Or does a morning cup make no difference whatsoever to my health?
The most honest answer: I don’t know. No one does. Not until they take a peek at your genes.
Coffee, Caffeine and Your Unique Liver
If you’re not familiar with the field of nutrigenomics, prepare to be amazed.
It turns out that caffeinated coffee can either be a medicine or a poison. At least when it comes to one particular risk: heart disease. And it all hinges on one specific gene, called CYP1A2.
You see, the CYP1A2 gene tells your liver to make one of two enzymes: CYP1A2 fast or CYP1A2 slow. Now, here’s where it gets interesting.
If you have the gene that makes the fast version of CYP1A2, each time you drink caffeinated coffee, your body processes and eliminates the caffeine from your bloodstream very quickly.
That effect — being a fast metabolizer of caffeine — leads to a decrease in heart disease risk when you drink a moderate amount (two to four cups) of caffeinated coffee each day.
(Stay thirsty my friends!)
However, if you have the gene that makes the slow version of CYP1A2, each time you drink caffeinated coffee, your body processes and eliminates the caffeine from your bloodstream very slowly.
That effect — being a slow metabolizer of caffeine — leads to an increase in heart disease risk even when drinking the same amount of caffeinated coffee each day.
(Damn these slow genes!)
Crazy, isn’t it? When it comes to heart disease risk, caffeinated coffee can actually be a “poison” for one person. And a “medicine” for another. It all depends on one little gene.
Coffee, Caffeine and Your Unique Nervous System
Speaking of genes, here’s another interesting story. Scientists have frequently observed that some people who drink caffeinated coffee have a lower risk for developing Parkinson’s disease. However, not everyone sees this benefit. There are people who can drink lots of caffeinated coffee and still see no benefit in terms of Parkinson’s risk.
What could possibly explain this? Well, nutrigenomics to the rescue again!
There’s this gene called GRIN2A. I won’t go all into the science but here’s the bottom line: If your GRIN2A gene behaves one way, coffee is your best friend when it comes to Parkinson’s risk, lowering it by almost 60 percent.
If your GRIN2A gene behaves a different way, coffee really won’t make much difference when it comes to Parkinson’s.
It’s important to note that we’re not just talking heart disease and Parkinson’s risk here. Genetic variation may also explain why caffeinated coffee has been associated with:
— Disrupted sleep patterns in some, but not in others.
— Worsening of PMS symptoms in some, but not in others.
— Increased blood pressure in some, but not in others.
— Higher risk of miscarriage in some, but not in others.
— And so on…
A Little Off-Topic, But Interesting Nonetheless
If you’re paying close attention you might be having an ah-ha moment here.
(I know I did when I first read the research.)
What if all sorts of nutrition controversies could be unraveled with a deeper understanding of genetic variation?
Take carbs. Could it be that a low-carb, high-fat diet is medicine for one (genetic) type of person and poison for another?
Or alcohol. Perhaps moderate alcohol consumption could be really healthy for some folks but really dangerous for others?
The possibilities are endless. And I suspect that studies in nutrigenomics are going to shake a lot of things up in the coming years.
(Note: if you’d like to learn more about your own genes, which variants you have, and how some of these can influence your health, check out 23andme.com.)
But, Back To Coffee
By now, the point of this article should be coming into focus: like most other foods, caffeinated coffee isn’t universally good (or bad).
Yes, it’s a rich source of antioxidants (with more antioxidant power than tea and dark chocolate) and other bioactive compounds.
And it’s these compounds that may, in some contexts, offer interesting benefits including:
— better athletic and mental performance,
— lower risk of some cancers, neurodegenerative diseases, and Type 2 diabetes,
— some prevention of premature mortality and cardiovascular disease.
But there are other compounds in caffeinated coffee that are poorly tolerated by some. And in these folks, caffeinated coffee might need to be avoided.
(Note: if you’d like to dig a little deeper, check out this article.)
Quick Research Note
It’s probably also important to note that most of the research on caffeinated coffee is epidemiological, which means it uses studies that look at associations rather than cause and effect.
While this type of research still offers some value, it is weak. Mostly because correlation doesn’t necessarily mean causation.
In other words, simply because coffee is associated with particular risks and benefits doesn’t necessarily mean that coffee causes all of these risks or benefits.
What To Do Next
Okay, so now’s probably the time people expect me to make “expert recommendations.” However, instead of telling you what to do, I’d prefer to just tell you what I’ve done.
To start, I’ve gotten genetic screening. The result: across the board, I’m well-suited — genetically speaking — for coffee drinking.
However, that doesn’t necessarily mean coffee drinking is a good idea for me. Indeed, if I’m not careful, coffee still makes me jittery, jumpy and a bit neurotic. So, I don’t drink it every day. In fact, I save it for the times where I really need an energy boost.
The rest of the time I start my day with a green tea and an anti-oxidant rich green food drink. This is the routine that feels best for me. But that’s just me.
For everyone else — especially you coffee drinkers who don’t plan on doing the genetic testing thing — it seems like your best bet is to limit intake to about one to three cups (eight to 24 ounces) of caffeinated coffee per day.
Then listen to your body. Sometimes it’ll tell you everything you need to know.
(No genetic testing required.)
John Berardi, Ph.D., is a founder of Precision Nutrition, the world’s largest online nutrition coaching company. In the last 5 years, Dr. Berardi and his team have personally helped over 20,000 people get healthier (and lose over 300,000 pounds of body fat) through their renowned coaching program, Lean Eating.
For more by John Berardi, PhD., click here.
For more on diet and nutrition, click here.
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