Rosalynn Carter once said, “There are only four kinds of people in the world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers.”

More than 65.7 million Americans care for someone who is sick, disabled or aged, according to the National Alliance for Caregiving and AARP. The decision to take on this responsibility may be a choice or an unexpected twist of fate, but the key to fulfillment is a conscious awareness of the needs of both the caregiver and the cared-for and a plan for the transitions that are yet to come.

Make the Decision

Making the decision to be a caregiver is not always a choice—where an adult child may choose to take in ailing elderly parents, a spouse is thrust into the position—but with conscious planning, acceptance and facilitation, both the caregiver and the patient control the situation and environment.

“As an only child, the decision to have my parents move in with me was a given, although I had denied the eventuality of it for a long time,” said Helen Amalia, 43, whose parents had been suffering from various ailments for three years while living three hours away. “We had to make a change and make proactive choices so the new living arrangement would please everybody.”

Accept the New Normal

The first step, and sometimes the hardest, is the realization that life is changing, and there is no going back.

“The first time my father got sick I kept myself going by thinking he would get better soon and my life would get back to normal,” said Amalia. “The truth is, this IS my new normal. Since I’ve accepted that, I’m better able to handle the present and plan for the future.”

It’s also necessary that caregivers acknowledge their fears rather than simply push forward. Carol Schwidock, owner of Harmony Yoga Studio in Stamford, Connecticut, believes it’s impossible to be a conscious caregiver without facing the emotions that accompany such significant changes in two people’s lives.

“For myself, as a caregiver, I needed to keep positive, but you also have to let yourself feel what’s there, and respect your body’s message to ultimately surrender and release and let go. Sometimes you feel really sad, and you have to be with the sadness.”

Face the Logistics

Being conscious and present in the moment as a caregiver still requires planning ahead for what may come.

Legal forms, finances, last wishes, insurance policies and other topics may seem cold and clinical, but facing them together with the patient, if that is possible, can bring a peace of mind that allows greater focus on care and comfort rather than cash and consequences.

“The first time my father was in the hospital, our main concern was if he would pull through or not. There was no power of attorney, no living will, no last will and testament in place,” said Amalia. “When he rallied, we briefly talked about getting POAs done and then quickly pushed it to the backburner.”

Two years later, right before Amalia and her father were about to close on a house, he suffered a stroke and they almost lost the house when he wasn’t lucid enough to sign the POA papers.

Ask the Big Questions

With a laundry list of day-to-day tasks, it’s not surprising that sometimes the caregiver’s concerns are not the same as the patient’s, particularly in the case of a sick spouse.

Beth Prins Leas’ husband was diagnosed with Hepatitis C just after their child, who is now 21, was born. Early on, he showed few symptoms of the disease, but was very sick for the last five years of his life, and died at age 47 while waiting for a liver transplant. Leas, the founding director of Total Life Care Center in Norwalk, CT, was 43 at the time, and her daughter was only 14.

“Even though you think that when you have a lot of time to say goodbye it somehow makes it easier, a lot of times he and I were in very different places,” she said. “I wanted to talk about all those things, about healing parts of our relationship and making plans for what he wanted for the memorial service, but he was angry, he didn’t want to wrap things up. It didn’t unfold like a storybook.”

One of the most important things Leas learned is that the caregiver needs to ask questions to be aware of what her loved one feels, wants and thinks, if that’s possible.

“I was making sure that everything was being taken care of, that he was comfortable, that we were going to all the doctors’ appointments. He was more aware of the fact that he was not going to be here that long, so he was angry about it and was also withdrawing in some ways. I wish I had that awareness then rather than seeing it as non-compliance or something against me.”

Understand the Phases of Caregiving

Caregivers are not always caring for bedridden, dying relatives. In Amalia’s case, while her mother battles cancer and her father recovers from a stroke, they are both still capable of grooming themselves, moving around the house (if not up stairs), short trips to the grocery store and cooking meals. While he or she needs to be nearby, he or she wants to let them be as independent as they can be, for now.

“For me, conscious caregiving means being aware of their current health status, maintaining it as long as we can, and being prepared for when we enter a new phase that requires more of my time and attention,” she said.

Schwidock took the same approach with her husband, who had an autoimmune liver disease from which he was asymptomatic for years.
“The last 10 years of his life, he was in and out of the hospital a lot, and after 9/11 happened, I decided to leave my job as an occupational therapist and become a yoga teacher, because I wanted to do more for wellness rather than for illness,” she said. “My caregiving to him became more of wellness caregiving and trying to find the positive.”

Acknowledge the Caregiver’s Needs

Most importantly, the caregiver needs to take care of herself and ask for help. This isn’t easy, particularly if he or she works full time or has children. Leas’ friends cleaned her house once a week and brought dinner every Friday night for years while her husband was sick. Caregivers need to be aware of their limits, and be willing to place themselves in the hands of others for some brief, re-energizing respite.

Schwidock agrees this is critical to caregiving. “The conscious part, to me, is being in the present moment, and choosing the things that are going to help this person mentally, physically, emotionally, and spiritually, because it’s not just the physical—you need to embrace all of that.”

Patricia Staino is a freelance writer living in Holly Springs, NC, who spends her free time teetering in tree pose and sneaking off to read. She can be reached at [email protected].