Am I My Brother’s Keeper?
My husband and I were on a vacation in Mexico recently, and after bumping into the same couple a few times and having brief, but fun conversations, we invited them to join us for lunch.
As typically happens when you meet someone new, we talked about where we were from, what the weather was like at home, and what we did for a living. When I mentioned that I helped people understand and cope with the emotional stress of caregiving, Lisa*, the wife said, “Oh, Carl! She might be a great resource for us!”
It turns out that Carl* is the primary caregiver for his identical twin brother Jack*, who is a diabetic and is beginning to exhibit symptoms consistent with Alzheimer’s. My immediate thought was, “Carl must be an extraordinarily kind and generous man. He must love his brother very much!”
As he shared his story, though, I came to understand that Carl’s connection with his brother, like many familial relationships, is complicated.
Do Diseases Always Start in Our Genes or Do They Sometimes Start with Bad Choices?
Carl and Jack were close as kids. They did everything together. Even close friends had difficulty telling them apart and would often ask, “Which one are you?”
In high school, Carl hit a growth spurt that missed his brother. When he ended up being few inches taller, instead of asking, “Which one are you?” people would then say, “Oh, I know who you are. “You’re Carl––the tall one!” or, “You’re Jack! You’re the short one!”
Both men went to college and both became engineers. Both drank and smoked and partied a lot in school, but a few years after graduation, when Carl was looking for a new challenge, he decided to run a marathon. He quit smoking and drinking, and running became his new addiction.
As the years passed, it seemed that Carl was blessed with good luck, while Jack had one bad break after another. Eventually, Carl stopped telling Jack about any of his own professional advancements, as well as the accomplishments of his wife and children, because he knew that instead of being happy for him, Jack would make a snide comment about his “fair haired brother’s” perpetual good fortune.
The brothers are now 72-years-old. Carl is happily married, retired, and financially comfortable. His children are healthy and living active, productive lives. Jack still drinks heavily and he is divorced. He is estranged from two of his three children and his primary source of income is Social Security.
Jack needs help managing his meals and medications, so Carl pays for a caregiver to come to his home four days a week. On the other three days, Carl drives 60 miles from his home in San Francisco to Santa Cruz where Jack lives. He takes Jack to his frequent doctor’s appointments. He buys his groceries and he’s taken on the responsibility of doing Jack’s yard work and the maintenance around his home.
After Carl described all of the things he was doing to take care of his brother, I said, “Wow! That is a huge obligation. That is incredibly generous of you!”
His wife Lisa chimed in, “Yes! It would be hard if Jack was a good man and we liked him––but he isn’t and we don’t!”
Surprised, I turned to Carl and said, “So why do you do so much for your brother? Is it because you feel guilty that your life has turned out well and his hasn’t?”
Carl sighed and said, “I suppose that could have something to do with it. We aren’t exactly identical any more, but when I look at him, I see myself. We have the same DNA. I could have been the one to get diabetes. I could be the one that’s losing his mind to Alzheimer’s. Both of us have these diseases in our genes. But he got them. I didn’t.”
I said, “Carl, maybe you are luckier than your brother, but maybe you don’t have some of the same physical challenges because of the choices you made.”
Carl said, “How so?”
I said, “Well, in order to be a marathon runner, you had to train and take care of your body. You didn’t smoke or drink or over-eat, right?”
Carl nodded, and I continued, “You may have been running all of these years for the endorphin rush, but all that exercise strengthened your heart. Research tells us that anything we do that’s good for our hearts is good for our brains. We also know that heavy drinking destroys brain cells. Your brother made different choices than you did. Maybe you got the good genes and he got the bad ones. Or maybe his lifestyle choices made him more vulnerable to these illnesses.”
Why Do We Care for Family Members Who Really Don’t Appreciate or Like Us?
In almost every family, there are rivalries and conflicts. We may grow up in the same household, but the choices we make about getting an education, the person we marry, where we live, what we do for a living, the books we read, and the news we follow all affect who we become.
We sometimes think because we had the same parents that we should share similar values. But the truth is that sometimes the only thing we have in common with our siblings is our DNA.
So what keeps us connected, and what motivates a man like Carl to give his time, money, and attention to a sibling who has never been very supportive or kind to him?
There are probably as many reasons as there are siblings. Here are a few:
- Genuine love and respect for a sibling
- Shared memories from youth
- Sense of obligation to parents
- A sense of guilt for having an easier life, for being healthier, wealthier, or for having been Mom’s favorite
- Sadness for your sibling’s situation and fear that if you don’t take care of him/her, no one else will
Does Taking Care of a Sick Sibling Make You a Good Person?
Maybe it makes you a good person. It could also make you an angry, resentful, and bitter person. The important thing to remember is that you do have a choice. You don’t HAVE to do this. You are CHOOSING to care for someone who cannot care for him or herself.
The ties that bind us as family members are mysterious, and if you choose to take it on, understand that caregiving is one of the most incredibly difficult and generous acts of love any of us will ever perform on behalf of another.
Your siblings may not deserve your generosity. They may have bullied you when you were a kid, been jealous of you as an adult, and they might even resent your help now. But if they need help, and you are willing to give it, be sure to take care of yourself while you are taking care of them.
Here are five quick tips for caregiver self-care:
- Set boundaries. Be clear about what you will do and what you won’t do. Be specific about the amount of time, money, and effort you are willing to give.
- Give guilt the boot! If you are struggling with caregiver guilt, check out the videos in this series: Caregiver Support for Coping with Caregiver Guilt
- Hire outside help. If your sibling needs more assistance than you can give without feeling resentful or ignoring the needs of your spouse, your children, and your work — seek outside help from friends or other family members. If no one else is available, hire a professional caregiver. Contact Griswold Home Care to see what services are available in your area.
- Let go of what was and accept what is. You can’t change how your relationship worked in the past, but you can control your part in it now. Be kind, but be firm. Do not allow yourself to be bullied, manipulated, or controlled.
- Accept that you are human. As a caregiver, you will experience anger, guilt, depression, and grief. That is normal. Understand that having negative feelings doesn’t make you a bad person. Join a caregiver support group or talk to a friend or relative who will let you vent without judging you or telling you how you should or shouldn’t feel.
Finally, understand that caring for someone through an illness and possibly the end of their life will be one of the hardest challenges you will ever face. There will be countless things you cannot control, such as the progression of a disease, the behavior of your sibling and other family members. You will get tired. You will feel unappreciated, and you will experience every difficult emotion with high intensity and frequency.
And when it’s over, you will eventually come to realize the magnitude of the gift you have given. You made a choice to care for a sibling who may or may not have deserved or appreciated your time, attention, and care. And you will never regret being the one who found the strength, courage, and compassion, to do what needed to be done.
* Names have been changed to protect privacy.
Elaine K Sanchez is the author of the tender, gritty, and unflinchingly honest book, Letters from Madelyn, Chronicles of a Caregiver. Her free Caregiver Survival Course is available on her website. She frequently speaks at caregiving and eldercare conferences across the US. Click here to see Elaine’s speaking schedule to find out if she will be speaking in a community near you.