Caregiver Care: What’s Needed Now

 May 12, 2016
Posted by M&LAdmin4

Thursday, May 12, 2016

Hello everyone, and welcome back to the blog this week! Today, we are very lucky to be able to share with you another post from ILO Participating Family member Barbara Goldschmidt. Today, Barbara writes about the importance of caring for caregivers – please read on to learn more. (Note: to learn more about ILO, please click here.)


Sometimes I don’t want to be a caregiver anymore. That doesn’t mean I don’t care. I’m not sure what happens; maybe I get tired, unsure about what to do next, or start longing for a new chapter in my own life. Could it be moon wobble or maybe the weather?

Caregiver fatigue is common in all stages of life, whether we are caring for children, spouses or aging parents. There are about 60 million unpaid caregivers in the U.S., helping a loved one who is elderly, ill or disabled. We are a mighty, but tired, nation.

If we are caregivers of a young adult with a disability, we have spent a lot of effort trying to help our child navigate the future. It can be a 24/7 occupation. However, unless we take time out to care for ourselves, we will inevitably hit the wall known as burnout. This is a state we should try to avoid.

As the mom of a 30-year old with perceptual impairment, I have only recently begun to acknowledge my own needs. Ironically, satisfying some of those needs also takes time and energy. But getting satisfaction is not just another chore. By changing positions—both physically and mentally—I hope to recharge my body and mind.


Support groups have a long history of helping participants in ways that protect health and prolong life. The support of parents who have similar challenges, like the ones I’ve found in the ILO group, has energized me and provided fresh insights. Our group is keenly focused on finding solutions to housing and employment, so it’s not only about socializing. But we do get to share personal frustrations and achievements, which allows us to develop relationships and not just get “information”.

Caregiver support groups abound all over the country. An Internet search turned up my group, which meets regularly. Online support groups are a possible solution for anyone who lives in a remote area, has transportation issues, or has a rare problem not shared by anyone locally.

Ways to Play

I could worry 24 hours a day. That’s boring and doesn’t help me aspire to the future. I began to look for ways to break my patterns and recently took up ballroom dancing. Social dance is very much like going to a playground for adults.

Dance combines movement, music, interpersonal connections, and a learning curve that can lead to accomplishment. But movement of any sort helps the brain. A recent educational blog describing the benefits of play for kids said that “play is an especially important time for developing capacities for creativity, problem solving and emotional and intellectual development.” Just what the tired, perplexed caregiver ordered!

While “exercise” can feel like work, getting in touch with the body through art or creative movement helps connect to emotional intelligence. When I started to dance, I began to really listen to the longing and joy in music. The varieties of expression helped put me in touch with feelings I didn’t even know I had, let alone articulate. There’s a font of personal power behind that door.


For thirty years I’ve been the champion for my daughter with special needs; fighting the school system, the medical establishment, the wrong assumptions of others. Maybe my recent devotion to “play” has indeed helped me, because a light went on the other night when I realized there are no “answers”. We can try to assemble as many pieces of this puzzle as we can, but there is no surefire way to solve it. I have to loosen my grip and act as a transitory shepherd to others who can provide support and companionship throughout our daughter’s life. This means envisioning trust instead of problems. I’m working on it.

Deep Relaxation

The Buddha supposedly said a person may escape physical illness, but no person escapes mental illness. His method of meditation was meant to be a balm for the stresses of life. Today, research shows that meditation grows the area of the brain associated with compassion.

To get results with meditation it takes time and regular practice. I don’t have a formal meditation practice, but have had teachers in progressive relaxation, mindfulness and imagery. I start my mornings with a few minutes of meditation, sometimes with movement (Tai Qi). As a result, I can be calm in a crisis.

At the end of the day I spend some time doing yoga, which is a nice combination of movement, aware breath and concentration. I was happy to see a recent article that said 10 minutes of yoga a day can help with osteoporosis. I make it a rule that I have to do my yoga routine before I have my nightly beer! (For more information on yoga, please click here for a great article on yoga and improvements in memory and mood.)

A quick and reliable kind of relaxation can be found in massage therapy. Caring, rhythmic touch has been shown to reduce cortisol (the body’s stress hormone) and increase endorphins (the body’s natural pain reliever and relaxant). As a licensed massage therapist and co-author of a book, Comforting Touch for Dementia and End of Life Care. I’ve witnessed the power of massage as both a giver and receiver! Research shows that caregivers who provide massage also experience reductions in stress. Maybe you can learn to provide massage for your care recipient.

Whether you want to get a massage or learn how to give one, look for a licensed or certified therapist. Requirements vary by state. If you need a low cost alternative, find a reputable massage therapy school; most have student clinics.

Without stress relief we are at risk for depression and illness. Support needs may go beyond what a group like ILO can provide for an individual. We spend a lot of time making sure our self-advocates get the professional help they need; we can’t afford to let our own mental and physical health suffer.

Emotional Connections

Caregivers can feel busy, overwhelmed and easily get isolated. However, we all need Vitamin T, for touch. Lack of intimate contact can contribute to frustrations that come out as anger and general grumpiness. I have 20-20 hindsight about this. I’m trying to reach out more to my family and friends. I am becoming more open to accepting hugs, spending time together, and exploring new activities.

Uniting for Caregivers Needs

Can caregivers be asked to do one more task? Yes. The voices of 60 million caregivers need to be heard. I volunteer with the Family Caregiver Platform Project ( a policy advocate group working to get caregiver recognition and support by demanding it from local political leaders. A crisis is looming, as current caregivers and their care recipients get older. My work with ILO and with the Platform Project shares the idea of creating partnerships that lead to communities that care. Who knows what kind of revolution millions of empowered caregivers may create?

More information

Thank you to all our visitors for taking the time to visit our blog today! We hope that you took away some useful information as well as the inspiration and motivation needed to ensure that the caregiver in your life – whether it be you, a family member, or a friend – gets the care that he or she needs to in turn care for others.

If you would like to learn more about ILO and how we facilitate networks of support among our participating families and self-advocates, please contact us! We would love to hear from you.

Thanks again – until next week!

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