In this age of living longer, one’s longevity sometimes comes at the expense of another’s wellbeing. It has become increasingly common for a daughter, wife or sister in middle age — and sometimes much older – to find herself unexpectedly holding down an overwhelming new job: as caregiver to a family member. When the care recipient has an incurable, degenerative disease, caregiving can go on for years with no expectation of recovery. The debilitating, chronic diseases include Alzheimer’s and other dementias; Parkinson’s, Huntington’s and related movement and brain disorders; ALS (Lou Gehrig’s disease) and Multiple System Atrophy, among others.
Palliative care and hospice programs are also becoming more common in our communities. Their aim is to make life more comfortable for the chronic care recipient. After a hospice case has been closed, (after disease has claimed a life,) a bereavement group or counselor sometimes steps in to support the grieving family. But rarely is the caregiver’s grieving — related to slowly losing a loved one – specifically addressed or treated, during the many stressful years of caregiving.
“Caregiver Burden,” a term used by medical professionals, denotes the debilitating effects of long-term caregiving on the caregiver. It reminds us that, not infrequently, caregivers develop and carry (and typically ignore) the weight of their own stress-related health issues. As a result, they sometimes die earlier than their care recipients. Added to the physical symptoms of Caregiver Burden are many self-protecting forms of denial. Common denials include holding unrealistic expectations of how degenerative diseases progress or what the care
recipient or caregiver is capable of doing, any of which can lead to the type of exhaustion known as “burnout.”
Some who have studied issues of human attachment, separation and loss believe that beneath the caregiver’s denial is a deeper fear of losing connections with the chronically ill loved one. Because it is well documented that humans cannot survive without connections, we use defenses such as denial; guilt; fear; anger and resentment, to avoid the even more painful feelings of loss: vulnerability, helplessness and abandonment which remind us of our earliest separation anxieties. Experiencing these painful feelings around a loss is what we commonly call grieving. It is usually associated with a period of deep sadness and sometimes, overwhelming, “complicated” grief.
A theory of “Productive Grieving” holds that painful feelings, when acknowledged, can be relieved and transformed into positive growth by coaching the grieving person to replace unproductive beliefs with more realistic hopes and goals, and to replace lost connections with other, newly-formed connections with family, friends and the community. These new connections also include new ways of being with the care recipient, based on a new appreciation of his or her changing condition.
Now, in Connections for Caregivers: Healing the Long Goodbye, a new series of ten coaching and support workshops, expert providers will teach caregivers, family members and friends new ways to thrive while losing a loved one to a slowly progressing, incurable disease. The free workshops are presented by The Dementia Initiative every Tuesday evening, from 4-6 p.m., from September 17 through November 19 at Nonotuck Resource Associates, Conference Suite 103, 40 Main Street, (Route 9) in Florence. For caregivers who cannot leave their care recipients home alone, care recipients will be accommodated, at no cost, during the workshops, in an adjoining room supervised by RNs and Care Managers on staff at Nonotuck Resource Associates.
Every week, for ten weeks, expert providers will help participants learn and practice such skills as: understanding how degenerative diseases progress; recognizing human needs for connection; adopting an attitude of “Radical Acceptance;” changing old expectations into new hopes; learning new roles; forming new connections with thoughts and feelings; forming new connections with the care recipient, with family and friends, and with the larger community. Each week, a trained presenter will focus on a separate topic and will direct activities and group discussion.
In addition to physical symptoms, another debilitating aspect of Caregiver Burden for the long-term, one-on-one caregiver can be isolation, which commonly causes depression. Lack of outside contacts can also lead to an inability to see alternative solutions. Although isolated caregivers can lose perspective, they usually are more frustrated than helped by unsolicited opinions from well-meaning friends and relatives who often do not understand the nuances of their situations. Many caregivers report that casual observers often don’t grasp why they make the day-to-day decisions they do. In particular, relatives (well-meaning or otherwise,) living at a distance from the care recipient, can sometimes be “generous” with their caregiving critiques, without understanding the full scope of the disease, or the physical and emotional toll caregiving takes, day after day; week after week; month after month; year after year.
The facilitated discussions included in Healing the Long Goodbye allow participants to share information with others experiencing situations similar to their own, in a supportive, structured, confidential setting. Without fear of being judged, caregivers have the opportunity to gain new insights and learn innovative problem-solving
techniques from the various weekly experts and from each other. These coaching and support workshops are designed to be intellectually and emotionally satisfying, but they are not psychological counseling groups.
The workshops, open to all, are offered in a handicapped-accessible meeting room with adjacent free parking. Participants may attend any or all sessions. For more information and to register, email: [email protected]
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*Eleanor Wakin, Director of The Dementia Initiative, was formerly a university professor. She lectured, worldwide, for the US Information Service (USIS) on Problem Solving Strategies for Entrepreneurs. She produced the television series Face to Face and was a dementia caregiver for eleven years.
