Caring for the aged, ailing or disabled is a growing field.
But with more people caring for their loved ones, who is looking out for the caregiver?
A panel of experts presented tips for caregivers at the Family Caregiver Symposium April 25.
Their message: Take care of yourself as well as your loved one.
About a fourth of all adults are caregivers, according to the Pinal-Gila Council for Senior Citizens (PGCSC).
That care ranges from running errands to providing around the clock live-in assistance.
Care for the caregiver
Kathy Allin, caregiver services with Duet, Partners in Health and Aging, said one in eight baby boomers will have Alzheimer’s disease after turning 65 and one in two will have the disease at 85.
Nearly 60 percent of all caregivers are women and 25 percent are over the age 60.
Caregiving is not just tasks, it can create a change in the relationship between the caregiver and the one receiving the care, she said.
If a caregiver is providing help for a loved one with dementia, the stress they experience results in a death rate 63 percent higher than that for people of the same age not caring for someone with dementia.
Even if a loved one does not have dementia, a family caregiver can suffer from depression and anxiety, a weak immune system, obesity, a higher risk for chronic disease and problems with short-term memory or paying attention, Allin said.
“Many people don’t even recognize they are family caregivers and go without access to any support or assistive services,” she said.
Once a caregiver self-identifies, they are more than 90 percent likely to look for resources and support.
The barriers to seeking support include: lack of self awareness; not wanting to hurt their loved one’s feelings; being overwhelmed; lack of time; hesitation to ask for help; unaware that support services exist.
Allin said the caregiving journey is different for everyone, but there are some common themes that impact the individual’s quality of life: social isolation; grief associated with ambiguous loss; lack of self-care.
She said that foregoing self-care is often the first and most significant sacrifice that a caregiver makes for their loved one; it rarely happens intentionally; it’s difficult to address.
She discussed the concept of “ambiguous loss” at length and recommended reading Pauline Boss’ book, “Loving Someone Who Has Dementia” (even if the loved one being cared for does not have dementia).
Boss coined the term ambiguous loss to describe the complicated grief many caregivers experience. It is a loss that is unclear; it can’t be fixed; and it has no closure. Essentially, the caregiver mourns the loss of the person their loved one used to be — they are here, but also gone. The causes: loved one is no longer the person they were; loss of the relationship as it was before; loss over control of one’s life due to ambiguity; role changes and reversals and a loss of (the caregiver’s) previous identity; loss of one’s future and dreams.
The effects include chronic sadness or depression, anxiety, hopelessness, identity confusion and helplessness.
Allin shared a quote from Boss, “Caregiving is dangerous to one’s health. Caregivers need the people in their life to be more understanding of the sheer complexity of their daily existence. Their journey of trying to do the right thing in an untenable situation is long and hard, and it requires more acknowledgment and community support to come through it with their health and wellbeing intact.”
The stress created by ambiguity can include: immobilization of the caregiver and their relationships, confuses decisionmaking, freezes grief and blocks coping. The possible effects: depression or sadness, anxiety, guilt, shame, ignores self-care, stress-related illness, substance abuse and possible abuse of others. The difference between sadness and depression is with sadness you still function, with depression you are not able to function.
The goal in caring for the caregiver is to help them learn resiliency, not look for closure. To learn resiliency, Allin suggests: grow a psychological family; identify community support — spiritual, recreation and respite, information and referral sources, maintain and modify family rituals, celebrations and gatherings, accept the “good enough” relationship.
She offered seven guidelines for caregiver resiliency and hope: find meaning; balance control and acceptance; broaden your identity (you are more than your loved one’s caregiver); manage your mixed emotions (you can be angry, but before acting in anger, take a breath and think about what has made you angry); hold on and let go; imagine new hopes and dreams for yourself on the other side of your caregiving journey; take the time to (care for) yourself.
Compassion for self –
compassion for others
Wayne Tormala, chief of the Arizona Department of Health Services, Bureau of Tobacco and Chronic Disease and a member of the advisory board of the Altruism in Medicine Institute, discussed having compassion for ourselves so we can have compassion for others.
There are basic rules of self-compassion: know yourself, your triggers and blindspots, and the things that cause you dis-ease; care for yourself in the present moment, practice self-forgiveness, kindness to self (stop being your own harshest critic); give yourself to contemplative time, do a one-minute self-audit and allow yourself a two-minute meditation.
Tormala shared his own self-audit dialogue: Will I die? When will I die? What will be most important to me when I die? Am I attending to this on a regular basis? Does this knowledge inform my daily life?
He said meditation does not have to be an involved, ritualistic affair; it can be as simple as breathing.
For instance, breathe in and think, “I am here,” breathe out and think, “I am home” or breathe in and think, “I do my best,” breathe out and think, “I let go of the rest.”
There are two kinds of meditation: letting go — just being there, nothingness; and purposeful contemplation — awakened decisionmaking.
Letting go need only take a moment or two, he said: let go of what has passed; let go of what may come; let go of what is happening now.
Tormala said meditation leads to mindfulness; mindfulness leads to compassion; compassion leads to an awakened mind. He continued, an awakened mind leads to reduced: fear, anxiety, burnout, chronic pain, blood pressure, heart rate, sadness, depression. It increases: focus, energy, confidence, resiliency, sleep, emotional hygiene, happiness, weight control, immunity, sense of well-being, work satisfaction.
He pointed out mindfulness takes discipline; it’s simple, but it’s not easy. “The more you do it, the more of a difference it makes,” Tormala said.
He said achieving mindfulness — being in the present moment — should be based on the knowledge that any given moment was caused by other moments, an accumulation of life disruptions; may or may not be agreeable, but it’s here and I must face it; it is the only moment I have; it is filled with choices of how I think, feel and act.
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