When a ChronicBabe becomes the caregiver

by Jenni Prokopy, the Editrix

What happens when a ChronicBabe—a gal who's accustomed to spending energy on herself whenever possible—needs to become a caregiver? What happens when a Babe has constructed a life that's all about taking care of herself, and suddenly she's taking care of someone else?

One of my very best friends, Michelle, now faces this scenario. Her mom was recently diagnosed with advancing Alzheimers and Michelle and her brother, Gregg, spend a lot of time driving hundreds of miles every weekend to make arrangements and generally care for their mom. It's extra tough on Michelle, who has diabetes and a few other chronic conditions to manage.

I also faced a similar situation recently, albeit MUCH more minor: my mother-in-law had her second knee replacement surgery a few weeks ago, and I spent a week with her to aid in her recovery. I did the same thing last year with knee #1, and it was a lot of work. (I was more than happy to do it because she's family and I love her dearly.) But she's doing so well with this year's surgery I felt practically useless!

The question Michelle posed to me the other day:

Even though we have to take care of our own health issues, have people found a way to take care of others in more dire situations, without losing their minds or sense of humor?

Michelle and I have spent some time discussing how we handle our own physical and emotional needs while taking time out to care for others, and we hit on some biggies. Perhaps you're caring for a parent, spouse, child, other family member, or even a close friend you consider family. Or maybe they're supporting you and could use some pointers. The ideas in this article serve not only as tips for you, but can also be a handy reference for any of the caregivers in YOUR life...so please pass this along.

Getting practical

Let's get down to brass tacks for a second and talk about the practical stuff you must do when you're a caregiver. You must take care of yourself first and foremost, because if you go out of commission, both you and the recipient of your attention are out of luck. Find a way to get the things done you would normally need:

regular sleep schedule, or as close as possible
healthy food and snacks
time to relax, meditate, stretch
medications; bring extra on trips, and get prescriptions at national pharmacies so you can refill easily (Michelle's awesome idea)
communication with loved ones...your team
time for work (if you must)
etc. etc. etc....you should know this list by heart, because it's what you already do to take care of yourself!

Making space and time for yourself

Michelle has to drive almost 300 miles to her mom's house, often after a long day of work. To help manage her energy and give herself a transitional break in between work time and caregiving, she breaks the drive in half and stays at a hotel overnight. (She uses points for free rooms, or accumulates points she then uses on vacations.) "After working all day, I don't want to drive five hours," she says. "Coming back, it's the same—I need a transition back to my 'normal' world."

When she comes back from a long weekend of caring for her mom, she tries to schedule a day off of work, or at least a work-at-home day so she can spend some time lounging and recouping her physical and emotional energy. During that time, "I do things that are comforting to me, like watching favorite TV shows or reading something—they're always uplifing, since my spirits are drooping."

I also try to find time for myself in the midst of caregiving. On my recent trip to my mother-in-law's, I made sure to schedule time to work out every day, and even got a temporary pass to a local gym. That time was as valuable for staying fit as it was for getting some "me" time.

Finding familiar, comforting take-a-longs

A little trick Michelle likes: she has preset radio stations that tune in her favorite station along her route, so she always feels like she has some consistency. It's a little comfort that means a lot.

She also brings lots of magazines to read—light stuff like Vanity Fair and Town & Country. (She gets her fix from a magazine share at work, so she feels good about recycling and buying less.)

When I go on trips, I often bring a few personal items like pics of my hubby or friends, jewelry I love, a fragrance or lotion that smells like home, and an iPod packed with playlists guaranteed to anchor, soothe or entertain me, depending on what I need.

Releasing emotions is important

Michelle is one of those rare Babes (in my experience) who has trouble crying. But the recent downturn in her mother's health has brought out the tears. "After I came back from a recent trip, I was crying, and it's so hard for me to do that," she explains. "So I listened to a song that made me cry over and over so I could get it out." What a great way to release those emotions!

I also make sure I have a few friends and other members of my support team on hand in case I need to vent. (Note to my lovely mother-in-law: there was no venting on this trip! You rock!)

Communicating and rallying the team

Getting your team behind you for support is clearly key. "I told my husband: you've got to be here for me, to hear what I need to talk about," Michelle says. She also filled in her friends and colleagues, and over the initial weekend her hubby Adam made sure all her friends knew what was going on, so if she wasn't as communicative as usual, or needed more support, they would be ready and available.

"You've got to work with other siblings and do what you need to do to work it out," says Michelle. If you're lucky enough to have others who can help you in the caregiving, be a team. "My brother and I talk about what we need to do, divvy up responsibilities and delegate. I take care of health care stuff and my brother takes on financial responsibilities, and it works great."

And especially if you can't be there full-time to care for someone, enlist more team members to help you out: people you trust with the experience necessary to be a good stand-in for you.

Asking for what you need

One of the most important things, Michelle says, is that we have to ask for what we need. "You have to do whatever it takes to get a day of rest, and it's vital to let people know what you need from them," she says. She used to stay quiet and suffer, being generous to a fault. "One day I just said f**k it—I'm going to say what I need, because I'm not going to get it unless I let people know."

Now, Michelle doesn't drop the F-bomb often at all, so you can tell she feels strongly about this—and so do I. There might be people who want to help but don't know what do to, or there might be people in your life who simply have no idea you need help. The only way to truly get what you want and need is to ask for it. You might not even get it then, but it's worth asking for!

Perspective helps

When you're a Babe who's sick all the time, caring for someone who's in the same situation—or maybe worse than you—can offer some important perspective. The situation reminds us that things could always be worse. Sounds trite, but it's true, Babes.

Being on the other side of caregiving also helps us ChronicBabes learn what our own caregivers might go through. I hope as you think about these needs and scenarios, it inspires thoughts of how you could make it easier for those who care for you. An example: instead of keeping all your meds in a baggie in your bathroom, make a list with names and dosages. It's handy for you, and handy for anyone else who needs to take care of you if something happens.

This new perspective has opened Michelle's eyes to what it's like to care for someone in such a personal way, and what it means for those who care for her. I feel the same way.

It's not about guilt—feeling bad about being sick, or feeling like a burden—it's about accepting the situation you're in and doing your best to make it easier if possible, whether you're the ChronicBabe, or the person who cares for the ChronicBabe.

P.S. After seeing this, Michelle adds:

In addition to taking care of your loved one and your chronic conditions, don't forget routine maintenance. For instance, the week I had to take my mom to her primary doctor and a specialist (psychiatrist) I also had my pap smear, mammogram and dentist appointment. It may seem like a lot, but really a few more appointments won't kill you—and may even save you!
Some days will be harder than others, so acknowledge that up front and do what you can. Some days I can spend eight or nine hours with my mother, other days it's only five or six and I have to go back to the hotel and take a nap or do some other self-care activity. Don't be hard on yourself on those days—you're doing what you can, and a little is better than nothing.
The "firsts" are hard—whether it's cancer and the first chemo treatments are making your loved one ill or her hair is falling out, or your parent with Alzheimer's doesn't remember your name, know that this will probably always stay with you and be as gentle with yourself as you are with your loved one.

Three cheers for Michelle, who is awesomely giving in sharing her personal thoughts.

Posted: 5/29/2008 in Relationships | Also posted in: Coping

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