Never robbed a bank, never stole a car, and — as far as I know — I never killed anything bigger than a mouse. But ever since my mom got dementia, my personal cup of guilt runneth over. What is it about the caregiver role that raises our sense of guilt to mammoth proportions?
Last week I had to complete about 70 hours of work in five days while the summer temperature rose from 100 degrees on Tuesday to 105 on Wednesday. These factors combined to reduce quality time with my mom to zero. Although I managed to keep many matters under control — paid bills on time, finished the work — guilt circled me like a buzzard because I was not emotionally available to my Mom.
Comments from so many caregivers show that guilt is something we all struggle with as we strive to give better care to our loved ones. There are few things more debilitating than this constant sense that we haven’t done enough or don’t know what’s right. I try to put guilt in its place by recognizing it as a constant companion to the caregiving process. This burdensome emotion can be cut down to size when you consider some of its components. Tentacles of the guilt octopus include:
- Survivor guilt — we still have happy thoughts, sensations, and connections with others that enhance our quality of life; it’s hard to take pleasure in these things when dementia has stolen them from our loved one
- If the loved one is a parent, caregivers must bear witness to the disappearance of someone who provided them with the gift of life — it can feel like an undeserved gift when their suffering escalates; spouses also feel guilt from experiencing happiness when their life partner can no longer share it
- Guilt phrases seem to echo among caregivers: Have I helped enough? Did I make things worse? Was there a remedy, a practice, or a treatment that could have helped them more? Everyone has their limits. You can keep looking for resources, but you shouldn’t impair your own health by trying to do too much.
- There is also the guilt we feel when we are stressed beyond our limits and lose our temper with someone who is unable to control their difficult behavior. We all wish we could behave our best when things go wrong, but a saintly degree of patience is probably not within our grasp. NOTE: there are only 10 thousand beatified saints, but there are 15 MILLION dementia caregivers! Don’t expect too much of yourself. If your lose your patience in a way that startles you, it may be a sign that it’s time for a break. Take that break!
Guilt is one of those pesky irritants that won’t go away unless you deal with it. If you fail to acknowledge its impact on your actions, it can push you into making bad decisions. Once you confront your feelings of guilt, you are better able to make choices that can defuse the situation. You will deplete your inner reserves for helping your loved one if you deny yourself happiness or the support of others. Certain medicines have proven to reduce symptoms of guilt. Try a healthy dose of honesty taken with a large glass of forgiveness.
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?