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On Being a Caregiver

Reflections on my own role as caregiver and a look at some helpful community resources.

I’m now a caregiver, much sooner than I had anticipated.

If you’ve been following this column, you may have read about my mother. She lives in Sacramento, and I get up to see her quite often for visits and doctors’ appointments. The tentative plan has always been that she would live with me and my husband if she was no longer able to care for herself. As of now, she’s still okay living on her own.

It’s my younger brother who needs care.

When I started this column, I never could have imagined I’d someday write this. In April, he was diagnosed with Stage IV colon cancer that has spread to his liver.

He’d been in Hawaii for almost 20 years (he’s now 55), living a simple life, which unfortunately did not include insurance or colonoscopies, but did include a relaxed lifestyle, beautiful sunsets and sunrises, learning the true meaning of aloha—living exactly the life he wanted. There aren’t many of us who can say that.

He’s now come to live with me and my husband, where he’ll spend the rest of his life and where I will be providing all the care I can possibly give him.

I keep telling myself people deal with this every day, but you never expect it to happen to you or someone in your family. I’m scared, worried, stressed, heartbroken—a slew of emotions are going on inside me. I know there’s a tough road ahead, but what I don’t know are the details of what it will take to be a caregiver.

I do have great support from family and friends. Here in Santa Cruz County, there are some wonderful community resources for caregivers. And it seems more and more of us will need their help as the number of caregivers grows.

Anji  Buckner, Project Manager at , said more people are becoming caregivers for a variety of reasons, such as the aging baby boomers and longer life spans.

“Additionally, institutional care is not what everyone is seeking and is expensive,” Buckner said. “Care at home is what many people desire and ultimately, it is more economical to provide care outside of large institutional settings.”

To help educate caregivers, Lifespan Care Management Agency has joined with other community organizations to offer a series of caregiver training classes at Cabrillo College.

Besides Lifespan, the other organizations collaborating on this effort to train caregivers—all great resources for caregivers—include the following (main city office locations are given, but each serves the entire county):

Seniors Council Aptos

Health Projects Center Santa Cruz. Their program, the Del Mar Caregiver Resource Center is also helpful.

Visiting Angels Santa Cruz

Hospice of Santa Cruz County Scotts Valley

Alzheimer's Association Santa Cruz

Elderday Santa Cruz, and their parent organization, Salud Para La Gente, is located in Watsonville.

Meals on Wheels Santa Cruz

Santa Cruz County Human Services Department Santa Cruz

Cabrillo College Aptos

The classes will cover such topics as Managing Hygiene and the Activities of Daily Living; Keeping it Safe: Transfers and the Body Mechanics of Caregiving; Finding the Answers: The Challenges of Dementia Care; and Advanced Care Planning and End-of-Life Needs.

Buckner said the instructors come from a wide variety of backgrounds.

“Our instructors are community based experts and providers who work with social service and care agencies,” she said. “Their backgrounds are in social work, counseling, education, psychology, geriatrics, and public health.” 

You can sign up for the entire series or take individual classes, but enrollment in the series is limited to 30 students, with a few additional students accepted for most of the individual classes. The fall series has already sold out, and a waitlist has started for the spring classes. If you’re interested, you can contact Buckner directly at 831-708-8576 or by email.

The series is obviously popular, and students have praised the instructors and the course of study. We’re lucky to have it here in our county. Buckner said people from other communities have contacted her wondering how they can get similar training in their community.

“The series is a wonderful way to meet caregivers and professionals in the field,” she said. “This can become a network of support and information because the group is very diverse in experiences.”

Buckner also said they are constantly looking at improving the series, for instance adding a nutrition class or offering classes in Spanish. She welcomes any ideas from the community.

When my brother first moved in with us, and I was helping him with some task—making him something to eat, getting him a glass of water, an extra pillow, just hanging out and talking—it hit me that I felt so alone and unprepared. It seemed silly at my age, but I couldn’t help thinking, we need our parents. We can’t do this on our own. But Dad passed away several years ago, and Mom simply isn’t capable of helping.

But I know I have an incredible amount of support from my husband (who, as my cousin says, is our rock), my family, wonderful friends, and this great community that does so much to help us when we really need it.

Elizabeth Hanes September 18, 2011 at 02:07 PM
I'm so sorry you're going through this. Becoming a caregiver overnight can feel scary and overwhelming. I think it's a very noble and loving thing you're doing, taking care of your brother. When my dad developed dementia, my husband and I moved him into our home and saw him through his final months. The experience alternated between scary, frustrating, funny, and joyful. I hope you're able to find the joy in your experience. I encourage you to put yourself at the top of the caregiving pyramid. So many caregivers do not. But if you don't take good care of yourself, you can't provide good care to a loved one. My blog, The Cheerful Caregiver (http://cheerfulcaregiver.com), offers inspiration and tips on self-care for caregivers. I hope you'll find something useful there as you go through your journey. Best wishes to you.
Linda Covella September 19, 2011 at 01:44 AM
Thanks so much for this, Elizabeth. I know I will be able to find some joy in this experience--just having the chance to spend this time with my brother will mean a lot. Other people have told me I have to take care of myself, too, but sometimes you forget that. I'll check out your blog. Thank you!

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