Caring for the Caregiver in Multiple Sclerosis

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Caring for the Caregiver in Multiple Sclerosis

• Jennifer Rodgers, Ph.D., C.Psych.
• University of Alberta Hospital
• Edmonton, AB

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The Spectrum of Caring
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MS Variability

• Characteristics of caregiver and care recipient
• Their relationship to one another
• The dynamics within the care giving family
• Stage in life cycle
• Age and gender
• Influence of race and ethnicity

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• When does the caring role begin?

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Duijnstee Boeije (1998)

• Once diagnosed, the care role with all its
  efforts and adjustments is there. At first view
  the care role seems a logical part of the partner
  role. But the two are very different. One
  chooses the partner role, the care role just
  happens.

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• I knew he was really sick. He hasnt complained
  about anything for three days.

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Benefits of Perceived Spousal Support

• Exchange of information
• Reassurance
• Reduction in feelings of isolation
• Encouragement of other activities and interests

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• How does the quality of the marital
  relationship affect the caring role?

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Rodgers Calder (1990)Sullivan, Mikail, et al.
(1992)

• Marital quality is significantly related to
  adjustment to illness.
• Marital difficulties exacerbate the stress of
  illness.
• Healthy marriages reported less MS-related stress
  and lower levels of depressive symptology.

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How does the stage of life impact on caring?
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Life Stage Dilemmas

• MS is dx between the ages of 25-45
• Life goals are being formulated
• Important decisions are being made by couple
• Sacrifices may be made based on fear of the
  unknown future.

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Challenges

• Should we have children?
• How many?
• Should we take that great job far away from the
  family?
• Do I go with the safe job choice or the one I
  want?

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We need a plan.
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Decisions

• As symptoms interfere with life plans, roles and
  expectations, healthy spouse may begin to feel
  that his/her entire life is dedicated to MS.
• Strain on marriage is great. Increase divorce
  rate among newly married couples who have little
  history to cement their relationship.

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Gregory, Disler Firth (1996)

• The care giving routine gradually seemed to
  become a way of life, particularly for older
  caregivers, and was accepted as ones lot or as
  the way things are.

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What caregiver issues begin to emerge?

• Lack of recognition and appreciation
• Difference in perception about care
• Chronic Sorrow

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• How do increasing, personal care
• demands impact on intimacy?

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MS Related Sexual Difficulties

• Neurological changes
• Debilitating symptoms of the disease
• Psycho-social sequela

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Caregiver Problems With Intimacy

• Emotional turn off
• Disinterest
• Fatigue
• Sadness
• Worry

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How do MS-related affective disorders impact on
the caring process?

• It results in frustrations and difficulties in
  dealing with affective symptoms of depression,
  bi-polar disorder and pathological
  laughing/crying ,as well as, general mood swings
  and irritability.
• Family-members report that it is easier to deal
  with the physical symptoms of MS than the
  emotional symptoms or reactions.

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• How does cognitive impairment
• complicate the care giving
• process?

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of Individuals Working

• Cognitively Intact 44
• Cognitively Impaired16
• Less likely to be involved socially
• More assistance needed with personal care and
  home-making activities

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Relationship Change

• From - romantic commitment
• - shared raising of children
• - plans for a healthy future
• To - commitment to marriage vows
• - friendship-based relationship
• - management of current situation

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What are some causes of caregiver burnout?

• Excessive caregiving
• No time for self
• Guilt over wanting to use respite care or outside
  help
• Caregiving is a delicate balance of providing
  care, safety and comfort while preserving
  autonomy to the fullest extent possible.

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Symptoms of Burnout

• Negative emotions
• Feelings of hopelessness
• Interpersonal problems
• Health problems
• Substance abuse

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• Can burnout lead to abuse?

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Kalb (1999)

• It often happens initially in the context of
  giving or receiving personal care. The
  well-spouse roughly brushes the MS-spouses hair,
  the MS-spouse retaliates by scratching the
  caregiver during a transfer and the cycle of
  abuse escalates.

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• What help can psychologists
• offer caregivers?

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Counselling Services

• A safe place to vent unthinkable thoughts and
  unacceptable feelings
• Validation
• Help with communication skills
• An understanding of the impact of beliefs on
  emotion

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• How important is it that we
• recognize family caregivers?

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Cockerill Warren (1990)

• Support for caregivers is vital. If family
  members are to continue caring for ill relatives,
  then community and government support services
  must share the burden and help to reduce their
  strain and morbidity.

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