Choosing to Take Charge of Your Life

By Suzanne Mintz, National Family Caregivers Association

Often we become caregivers very suddenly, without warning-a husband is diagnosed with cancer, a child is in a car accident, a parent has a stroke. At other times, caregiving creeps up on us-we know mom is forgetting things, and we slowly start taking on some administrative tasks and calling more often, until one day we realize she no longer has the capacity to live safely on her own.

Regardless of how we become a caregiver, it is always a shock and always an emotionally painful experience. In the "hubbub" that follows, amidst the reorientation of our schedules, the search for resources, the fears about the future, and the challenges of the day-to-day, we never stop to think about what has happened and devise a plan that takes into account the health and well-being of all concerned-including ourselves. We just go on automatic pilot and do, and do, and do.

Somewhere along the line, however, it is vitally important that we do stop, take a breath, and try to gain some control over the situation, rather than letting the situation control us. It is vitally important that we choose to take charge of our lives.

What does that mean-choose to take charge of our lives? Obviously, we cannot control everything that happens to us or to our loved ones. But we can make active choices about how we are going to deal with the circumstances of our lives.

We can allow ourselves to feel like victims, or we can try to make lemonade out of our lemons. We can choose to martyr ourselves in the interests of the loved one for whom we are caring, or we can set limits on what we as individuals can and cannot do without causing irrevocable damage to our own health or the other relationships in our lives.

Caregiving is complicated. It is forever changing, and it usually involves a variety of people, not just the caregiver and the care receiver. Recognizing this is critical if we are going to give ourselves permission to actively make choices and not always be on the receiving end of consequences.

The choices that we can make, or have to make, during the course of our caregiving experience will change as circumstances change. It is hard to realistically make a decision about whether to try a risky experimental therapy if a loved one is asymptomatic. It is impossible to really know what it would be like to have your mother living with you and your family when she is frail and needs lots of help if she is only 61-years-old now and the picture of health.

Knowing that circumstances change, including our own health and innate capabilities, is vital to learning to take charge of our lives. Remembering that martyrdom always has a negative consequence for the martyr is a wake-up call to caregivers who put everyone else's needs first and their own last.

Choosing to take charge of our lives means recognizing our strengths and our limitations, and knowing that it is okay to set boundaries and to say, "Yes I can and will do this, but I'm sorry, I just can't do that." Being a caregiver, a willing and loving caregiver, doesn't mean you discard the word "no" from your vocabulary.

We need to know our own limits and the consequences of our actions. The lifting we could easily do five years ago may be having dire consequences for our back today. When we started spending more time helping grandma, it didn't seem to impact the kids, but now they are feeling the loss of our attention and getting into trouble at school to prove it.

Caregiving is a relationship-between many people. Choosing to take charge of your life means you recognize that you are one of those people. Making choices in your own interest isn't selfish-it is often the most important thing you can do for all concerned.

I've recently starting practicing what I preach. My doctor told me I am suffering from fatigue and anxiety. She gave me some medication to help me sleep through the night, something I haven't done for months. Getting enough sleep is now my number one priority, as is returning to a regular pattern of exercise, another "good for me" endeavor that has fallen by the wayside of caregiving.

Unfortunately, in order for me to do both these things, my husband Steven has to alter his nighttime schedule. Steven likes to stay up until at least eleven on weeknights, and even later on weekends. He also likes to go to sleep on his back and then be shifted onto his side after a few hours. I just can't do that for him now. I've said, "No. I need to try to get as much uninterrupted sleep as possible. I need to wake up refreshed and try to get some quality exercise at least three mornings a week. Because I have to help you undress and get into bed, I need you to go to sleep earlier and sleep on your side the entire night-at least until I get over this hump."

Despite the fact that Steven has MS, and each year seems to need help with more activities of daily living, our relationship is still a marriage. There is no question that I am his caregiver, but I am also his wife. Right now, because he is my loving husband, I am asking him to temporarily become my caregiver and help me restore my physical and mental balance.

In the years to come, he may not be able to do that. We may need to hire a personal care attendant or find some other way to help me get a good night's sleep-and we will. Because I am choosing to take charge of my life, not out of selfishness, but because I recognize that, "If I am not for myself, who will be for me?" I am choosing to live and not martyr my health and well-being to caregiving-and I urge all of you to do the same.

Many of the ideas in this article have been published in a new pamphlet in NFCA's Caregiver Self-Advocacy Series. If you would like to get a copy of Choose to Take Charge of Your Life, send a stamped self-addressed envelope to NFCA and we'll send you one. Interested in multiple copies? Use the publication order form on NFCA's website at www.thefamilycaregiver.org.

Suzanne Mintz is President and Co-founder of NFCA. Since this article was written, her life has gotten back on an even keel.