Taking Care of the Caregiver

In the past week and a half I have had the opportunity to be part of several events honoring caregivers. It’s a fairly new phenomenon, focusing on the caregiver. For eons caregiving has just happened as part of familial responsibilities, friendship or obligation. And if the caregiver was lucky enough to have a loving and caring circle around him or her, all the better. Now, it is more frequent that caregivers can find comfort and solace at conferences focusing on the caregiver, pampering events, or socials designed to bring caregivers together to share their stories, get some attention, and find additional resources to help fortify them for the hard work ahead.

One of the events was a conference sponsored by Grupo VIDA, an organization for families of disabled children. This was their tenth year honoring families and caregivers. They ask participants to leave their children with other caregivers for the weekend, so they can attend sessions, have good food, and dance. This organization targets Spanish-speaking families.

I’ve described this feeling before, I know, but I am always surprised and thrilled when I realize that what we are doing at Capabilities reaches deeply into the lives of so many, bringing ideas, solutions, and comfort. I gave a presentation on our theme, Be Unlimited, reviewing products and services for both the disabled individual and the caregiver. The two-pronged approach, many told me later, was unique, combining valuable information on products for their children, and ideas and reminders about taking care of themselves, too. Kudos to Grupo VIDA for this annual conference that brings together families, offering rejuvenation and renewal. It was clear to me how valuable a resource they are to so many members of our Colorado community, as people came from all corners of the state to spend the weekend.

Earlier in the week, I participated in the Caregivers’ Brunch co-sponsored by the Alzheimer’s Association. Caregivers sat on a panel and shared some aspect of the caregiving experience with the audience, comprised of dozens of people caring for loved ones, parents, siblings, children. One spoke about how difficult it was to accept the fact that her husband had been diagnosed with Alzheimer’s at age 60. It had been seven years and she said that she still struggles with the acceptance part. She said a book, “The Power of Now” by Eckhart Tolle, offered her some of the most powerful tools to cope. She said by focusing on the moment she is in, she can often find the peace and joy that eludes her when she looks ahead or back on the past seven years. She also shared some of the practical things she does to help ward off depression, including taking St. John’s Wort, a natural supplement, instead of antidepressants, which affected her poorly when she first took them. She also writes, by profession and as a means of chronicling her journey through this most difficult of roles, caregiver.

Another panelist, a mother of a 10-year old boy, Jacob, who suffered a significant trauma at birth and requires complete care. She created an anagram of ideas, using each letter of CAREGIVING to highlight a trait or message she finds useful. I was struck, for example, by her choice of “celebration” for the letter C. She said that initially she had forgotten to celebrate anything, so despairing was she of Jacob’s condition. Now she makes a point of celebrating even the tiniest of his movements, his recognition of a color or a shape, getting through the morning rituals that take up to two hours to prepare him for school. I was also moved by her choice for R, respect. She spoke about how hard it is to make choices for someone who cannot communicate, being the voice for someone else. So, she focuses on trying to imagine being him, wondering what goes on inside him and how he might react to the choices and voice she gives to him on so many issues. It’s one of her biggest challenges, she admitted. I also liked E, extreme. Not unlike extreme sports, extreme caregiving requires iron will, training and persistence. This alphabet approach worked, I thought, offering small meditations of sorts on the many qualities, challenges and aspects of caregiving that resonate for those who offer so much of themselves in the care of others.

I found myself thinking about the last six weeks of my brother’s life when I stayed at home and cared for him. During some of the more challenging times towards the end, I remember feeling as close to crazy as I had ever experienced (or have experienced since). The lack of sleep, exercise and regular meals wore on me. The anxiety about his impending death – would I actually be at his side when he passed as I wanted to be, could I face the emptiness of that moment when it actually arrived, what about my mother for whom he had been primary caregiver for years – grew as each day passed. I wanted to meet every need and yet he was slipping away, fear often in his eyes, as he reached and tried to get out of bed. I cracked one day. I just cried and cried, then I slept for hours, awaking in a fit of worry that he had died without me holding his hand. There were more days to come, though. I had moved through that worst day relatively intact, ready for more. My brother died two days before Christmas with many of us in the family at his side, holding him, easing him into whatever is next.

If you are one of the 15 million in this country who are caregivers, please share your caregiving story. As I participated in these recent events, I realized again the power of telling stories and uncovering common experiences. I witnessed how important it is to be able to recognize one’s self in someone else, to feel a sense of camaraderie in the toughest profession around, and to get ideas when it seems as if you’ve run dry of your own. Send us your questions, too, and your inquiries about products and services you know would help if only you could find them.

Read more in a previous blog on the Caregiving Conundrum.