Sadness and loss

The journey for family members of people with disabilities

By Evelyn Bugel, BA, Grad Dip (Psych), Grad Dip (Special Ed)

Receiving a diagnosis of a disability can have a profound and catastrophic impact on family members of people with a disability. Parents and other family members may experience loss, grief or trauma, or all of these at different times and to different degrees.
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Grief
Feelings of intense sorrow (or grief) that arise out of the painful recognition of the discrepancy between what was dreamed of and reality (Loos, 2002) are often triggered when families are told that a loved one has a disability.
Since 1969 when Elizabeth Kubler-Ross first described “Stages of Grief” in the literature, the grief of families of people with disabilities has typically been considered in the context of this model.

Kubler-Ross describes these stages as follows: denial (“this can’t be happening”), anger (“why me; this isn’t fair”), depression (“I’m so sad, why bother….”), bargaining (“I would do anything to make this stop”) and acceptance (I can’t fight it; it’s going to be ok”). However, unlike other experiences of loss (such as death or a divorce) receiving a diagnosis of a disabling condition is less “final”. Even though the nature of a disability typically unfolds over many years, families can feel encouraged to “accept” -- almost from the outset -- that their loved one has disability. Feelings of ongoing sadness and loss may persist for as you take in what the disability means when your child starts school, reaches puberty or moves through other developmental stages. In the context of such sadness, you may feel judged by others for not having “accepted” the disability or, indeed, judge yourself for having these feelings.

If not stages, then what? Terms such “ambiguous grief” and “non-finite loss” may better describe the experience of family members of people with disabilities. These terms acknowledge the uncertainty of what is lost at the time when a diagnosis is first given to families as well as the ongoing nature of the grief process for families (Boss, 2009 and Bruce, 2001). The grief for family members has also been called “frozen” because of the way that complications to grieving, including expectations to “accept” the disability, can prompt people to bury their feelings. The grief may be considered “disenfranchised” because of the way that families are not afforded the rituals (such as funerals and memorial services) that communities normally use to acknowledge a major loss.

The grief has also been called “complex” because the range of feelings that may come up can seem contradictory. Grieving may feel like being disloyal toward a family member with a disability who is also deeply adored. A study conducted by Melbourne Psychologist Elizabeth Bruce (2000) looked at grief in parents of children with disabilities who ranged in age from 3 years to 21 years. Bruce found that the majority of parents of children with disabilities still experienced a level of ongoing grief and chronic sorrow about their children’s disabilities when their children were adults. In this way, a model in which “acceptance” is seen as the healthy end point for someone who has experienced loss is a poor fit for family members of people with disabilities. Ongoing grief for family members of someone with a disability is normal.

Trauma
An event is considered traumatic when it is perceived by a person to be threatening to self or others (Pearlman & Saakvitne, 1995), and for family members of people with a disability, receiving a diagnosis of disability may be experienced this way. Symptoms of trauma may include intrusive thoughts and memories, avoidance and changes to thoughts and mood (American Psychiatric Publishing, 2013). Trauma symptoms may be repeatedly triggered for family members of people with behaviours of concern that put the person and others at risk. Conditions such as epilepsy and asthma that can be life threatening may also be traumatic for family members who have to respond to health emergencies. A traumatised person may have persistent and ongoing “fight”, “flight” or “freeze” responses. The “fight” response may translate into feeling angry, defensive or on “high alert”; the “flight” may be experienced as seeking to avoid certain experiences; and, finally, “freeze” may feel like being numb or unresponsive. These symptoms are reported by some parents of people with disabilities as an ongoing part of their experience (Bruce, 2000).

At risk
Family carers of people with disabilities are at “at risk” group. Left unprocessed, feelings of grief and trauma can snowball into more serious health problems, especially when combined with the high demands of caring. Consider the following statistics: family carers are twice as likely to report chronic health problems like asthma, high blood pressure, heart disease and cancer. They get less sleep, fewer days of leisure and engage in fewer social activities. Furthermore, family carers are considered more stressed than family carers of people with mental illness, chronic disease, terminal illness or the aged and frail (Hastings and Beck, 2004).

Getting Help
Recognise that it is normal for feelings of grief and sadness about your loved one’s disability
to persist for many years
Recognise that anger, feeling on “high alert”, avoidance or feeling shut down or numb may
be symptoms of trauma related to your role as a family carer
Talk to a doctor or health professional about these symptoms so that you can get help to
feel better.

Create and seek out environments in which you can talk about sadness and other feelings
with people who will treat your experience with compassion and respect

For more information on services for family members of people with disabilities visit
www.evelynbugelpsychology or [email protected] or the Carer Gateway
www.carergateway.gov.au