Tag Archives: caregiver support

Caregivers As Guinea Pigs — Want to Join an Experiment?

Many state of the art medical centers are developing new ways to help caregivers manage the harmful levels of stress in their lives through better self-care. Concepts like meditation and yoga may seem novel or strange to you, but the methods they employ are older than the New Testament. This research on caregivers has soared, in part, because medical treatments for dementia have not been very effective in halting the disease or changing patient behavior.

Earlier this year I participated in an online caregiver study with the Memory and Aging Center at the University of California in San Francisco, nearly 3000 miles from where I live. Although I was in a control group, I learned a lot about different techniques caregivers can use to refocus their attention and more calmly manage the chaos of dementia. Now, I’ve discovered a similar program operating closer to me at the University of Pennsylvania Hospital. Although the Penn program was designed to help cancer patients and their caregivers, its concepts are similar. The Penn Program for Mindfulness  teaches meditation techniques that can be used to reduce the negative influence that stress exerts on the healing process and daily health.

Unfortunately, even Penn is a little too far away for me to attend their training. So I’ve decided to try a different kind of meditation program. Deepak Chopra, who has written extensively about health and meditation, is offering a 21 day “Meditation Challenge” which begins tomorrow (7/16/12). I signed up for it to see what I can learn and whether or not it has an effect on my ability to manage stress and maintain a loving heart in the face of dementia. If you are interested in doing the challenge along with me, click the link here to go to the Chopra Meditation Center site.  You can register for this free challenge through Facebook. That’s how I did it, but I turned off the permissions to share my participation on my Facebook page. I don’t mind being a guinea pig for caregivers, but I’m not sure I want to publicize my entire experience.

Meditation is something I’ve tried in the past as part of a yoga retreat and follow-up training. But despite it’s helpful qualities,  I have never really succeeded in making it a daily practice. Now I’m willing to be part of this experiment to see if it can teach me to become more helpful to my mother in her time of need. The way I see it, dementia patients have been part of the largest group of guinea pigs in modern history. They were the first generation of humans to take so many pharmaceuticals for common health problems (i.e., statins for cholesterol control, blood pressure drugs, etc.). Now they are serving as research subjects for new drugs to halt, prevent, or cure dementia.

The least I can do as a caregiver is try to learn something that might make me better at easing my mom’s pain. The promotional material for the Meditation Challenge says it takes a few minutes per day and the meditations will be delivered to my electronic in-box.  If it seems too difficult or cockamamie, I’ll just quit and add their address to my spam blocker. But I’m interested to see if there is a benefit to adopting this daily practice. Wanna join me?


Caregiver Job Description: Delusions Required

Our loved ones have delusions, but caregivers have some too. It’s possible that we need them to keep ourselves afloat.

When I began to take care of my mom, I started a careful record of her symptoms and recorded changes in her cognitive skills. Reading over my notes from a few years back, I see now how determined I was to focus on what she could still manage while minimizing what she lost. Part of me was unwilling to believe that the disease would progress. Another part was determined to use every avenue of health maintenance to keep her symptoms at bay. We tried chelations, nutritional supplements, exercise, love…. The illusion that I could keep her stable was like some daily vitamin I took to fuel my caregiver routine.

Now I feel a strange nostalgia reading over my old notes.  They describe days when Mom could still make her breakfast or put on shoes. It seems like forever since she could cut her own food, but the pages remind me that there was a time when handling a knife was still within her repertoire. I desperately wanted to help her hold onto those skills. The crazy notion that I could do it kept me going.

My responsibilities have changed since then. Now my sister is doing more direct care for mom. This shift has given me a chance to reflect on the ways that caregiving has changed my life. As I observe my sister, I see that she’s doing exactly what I did: digging her feet into the sand, determined to keep the tide from sweeping good moments away. I don’t think this kind of perseverance is just some family trait. I believe it’s a quality caregivers need in order to survive. The caregiver job description might read something like: Must be diligent, a bit delusional, and able to stand upright as the hurricane blows around you.