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Rachael Wurtman
BY Rachael Wurtman

Four Reasons why you Might be Lonely if you are Caring for a Family Member with Mental Illness

Some individuals who live with and care for family members who have mental illness experience significant loneliness.  The causes of loneliness may include deficits in positive emotional connection or communication with the family members, the individuals’  physical isolation from professional peers and friends, and feelings of stigmatization and shame. For the purpose of this discussion,  I will refer to the individuals who live with those who have mental illness as ‘caregivers’ and the ‘children, adolescents, adult children, husbands, wives or parents who have mental illness’ as ‘family members’.

Lonely in the Presence of Family Members

Some caregivers report that they feel lonely while in the presence of their family members who have mental illness because it can be difficult to feel positive emotional connection and communication. There can be a disparity between a caregiver’s needs for conversation and relatedness and his family member’s capacity to engage with him. Some family members reject their family caregivers by refusing to interact with them or by interacting on an intermittent basis and the interactions can be hostile. I have heard the following stories (details have been changed):

  • A husband was so depressed that he lost his capacity to speak with his wife; instead, he spent hours scrolling through his online news feed.
  • During a meal, a son accused his mother of attempting to kill him.
  • A formerly loving daughter swore at her father and spat in his face.
  • A husband was charismatic and outgoing in public, at home, he accused his wife of having thoughts and of saying words that she never thought or said.
  • A young adult tells his mother that he loves her, then screams at her to leave the house.
  • He prepares their dinner,  then refuses to eat with her.

Presumably, the caregivers understand that their family members’ responses may be motivated by mental illness, rather than personal rejection.  However,  it can be difficult to separate thought from feeling.

Physical Isolation

An additional factor that may contribute to caregiver loneliness is physical isolation from professional peers and friends. Some caregivers are housebound with their family members: because the family members require care that only the caregivers are capable of providing.  

There may be several reasons for which the family members are the only individuals who are available and suitable to provide the care:

  1. They may be unable to identify or to afford to pay anyone else to provide care
  2. The family member may be unwilling to have anyone else take care of them
  3. The family member’s behavior problems may be so significant that the family member has been asked to leave group care.

If a child is very depressed, anxious, aggressive, recently hospitalized, or expelled from school, his parents may become his full-time caregivers. Spending the entire day at home to care for an individual who has a mental illness, rather than engaging professionally with adults outside of the home could cause caregivers to feel lonely.

No Social Opportunities

Some caregivers feel lonely because they are isolated from friends. Parents of children who have atypical or challenging behavior may find that socializing is difficult for some of the following reasons:  

  1. Other parents may be reluctant to socialize with those parents,  especially if the children do not have friends
  2. It can be difficult to arrange child-care and to travel.  
  3. Parents may be reluctant to invite guests into their homes if their children frequently tantrum.

The spouse of an individual who has mental illness may feel isolated from friends if their spouse’ behavior is considered socially unacceptable, if they are unwilling or unable to travel or to leave their homes, or if they require constant supervision.

Shame and Stigma

Finally, caregivers’ feelings of stigmatization and shame may contribute to their feelings of loneliness. Some caregivers feel reluctant to speak with individuals who do not share their experiences or who do not understand.  Some find it easier to blame the caregiver and even the family member than to learn about mental illness. Some caregivers report that they experience shaming from members of their extended families. One caregiver reported that his parents blamed him for his child’s aggressive behavior. Other caregivers reported that their parents had long lists of ‘shoulds’.  When strangers comment on the parenting style of parents whose children have a mental illness; those comments can feel judgemental.

Living with and caring for a family for a family member who has mental illness can contribute to a substantial sense of loneliness. Caregivers may feel that their needs for conversation and for emotional relatedness with the family member are unmet. In addition, the family members’ intense mental health needs may cause the caregivers to be isolated from professional and social peers. Finally, family members and others may cause caregivers to feel shame or stigma.

The following suggestions may be helpful for family caregivers who are experiencing loneliness:  

  1. Meeting other family caregivers who are having similar experiences.
  2. Identifying and appreciating small instances of positive connection with the family member who has a mental illness.
  3. Believing that life will improve.
Rachael Wurtman

Written on November 27, 2017 by:

Rachael Wurtman J.D., M.S, is a Special Education Attorney. She graduated from Barnard College of Columbia University and the Law School at the University of Pennsylvania, and she has a master’s degree in child development from Wheelock College. Prior to starting her Special Needs Consulting practice, she worked as an attorney and as an early intervention developmental specialist. She is also an experienced family mediator. To learn more or to request a consultation, see her website at rwurtman.com
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