Caregiver Stress in Epilepsy

Jaime Spinell Zuckerman, Psy.D.

Licensed Clinical Psychologist November 1, 2014

“The passage through the states of caregiving tends to

permanently alter the trajectory of the life-course,

detouring caregivers towards alternate routes and

destinations.”

Caregivers

There are only four kinds of people in this world:Those who have been caregivers,Those who currently are caregivers,Those who will be caregivers, andThose who will need caregivers.“

Rosalynn Carter

What is caregiving?

care·giv·er

Pronunciation: \-ˌgi-vər\

Function: noun

: a person who provides direct care (as for children, elderly people, or the chronically ill)

— care·giv·ing \-ˌgi-viŋ\ noun

What is stress?

Any change that necessitates adaptation. The response to this change determines

the impact stress can have on your life

Caregiving: What it really means

Love

Sacrifice

Sorrow

Reward

Resentment

Loss

Transition

Guilt

Anger

Empowerment

Family

Revising our definition of “caregiving”

“When one becomes a caregiver, one frequently finds that the entirety of one’s life has been restructured, both its social exterior and its psychological consequences.”

Aneschensel et al. Profiles in caregiving (1995), pp. 31

How epilepsy is unique?

AD: Relatively known course of illness Predictability Age of onset More resources available

Seizure Disorder: Course uncertain

Waiting for “when.”

Caregivers’ roles constantly vary Age of onset

This can be a full time job

Routinely making special arrangements with the “team,”, therapists, and so on.

Structured, safe household

Foods

Places

Some quick facts related to caregiving

Family caregivers who provide care 36 or more hours weekly are more likely than noncaregivers to experience symptoms of depression or anxiety. For spouses the rate is six times higher; for children caring for the parent the rate is twice as high.

Cannuscio, C.C., Jones, C., Kawachi, I., Colditz, G.A., Berkman, L., & Rimm, E. (2002). Reverberation of family illness: A longitudinal assessment of informal caregiver and mental health status in the nurses’ health study. American Journal of Public Health (92), 305-1311.

Caregiving as a Career

“The caregiving career, therefore, is not static: In addition to the present, each phase

embodies a history and foreshadows a future”

Aneschensel et al. Profiles in caregiving (1995).

You don’t get to leave your office

You can’t just “turn it off”

Huge emotional cost. Over time, this can lead to a form of caretaker "burnout." For many, having respite -- a chance to get away from home even for a few hours a week -- can help reduce the effects of stress. BUT……….

Often, caretakers continue to worry about day-to-day responsibilities even during their brief hours of respite. When this happens, they can experience a drain on emotional well-being that may impact them for some time to come.

Are you stressed?

THE ZARIT BURDEN INTERVIEW 22 items; 0,1,2,3,4 (total of 88 points) Never, Rarely, Sometimes, Quite Frequently, Nearly

Always

Interpretation of Score: 0 – 21 little or no burden 21 – 40 mild to moderate burden 41 – 60 moderate to severe burden 61 – 88 severe burden

© 1983 Steven Zarit

SO what do we do?

Limit this emotional cost.

Admit that you will be affected.

Admit you MAY need help

Know what to look for

Components of Stress

1. Physiological Based on central nervous system arousal

2. Cognitive Thoughts, self-statements, images associated with

perceived danger and uncontrollability

3. Behavioral Escape, avoidance or disruption of performance

*The way these three components interact account for spiraling effects of panic and anxiety

Craske, Meadows & Barlow (1994)

Here is what we look for

Physical

Feeling exhausted or lacking energy

Having problems breathing or chest pains

Increasing or high blood pressure

Racing heart rate

Grinding teeth during the day or at night

Here is what we look for Thinking

Looking to blame situations or others

Having problems making decisions

Feeling out-of-control

Feeling confused

Having memory problems, confusion or poor attention

Changing alertness

Here is what we look for

Emotional

Feeling anxious or guilt and/or grief “I can’t do this on my own”

“I am not a good wife/mother/sister/brother.”

“I am angry at my father/mother”

Resentment

Feeling fatigue and agitated at the same time

Struggling with hopelessness or helplessness

Increasing irritability, fear, or intense anger

Here is what we look for

Behavioral

Withdrawing from others

Unable to partake in daily tasks/chores

Laundry Cooking Self-care Finances Decisions put on hold Eating more or less than usual

Increasing use of alcohol

Sleeping problems including insomnia and nightmares

Common Psychological Symptoms Associated with Caregiver Stress Depression Helplessness Hopelessness Anxiety

Additional Symptoms Associated with Caregiver Stress

Conflict with spouse/children/extended family Family gatherings become

strained Abuse Shame Substance Abuse Physical Illness

Caregiving and Depression

Common in response to constant demands of being a caregiver

Caregiving does not cause depression BUT caregivers often sacrifice their own physical and emotional need

Can manifest in various ways

Caregiving and Depression

Person who provides care for someone with a physical illness may be more likely to suffer from depression.

Women experience depression at a higher rate than men

Caregivers and Depression: More on Warning Signs!

Sadness and crying that won’t go away

Increased irritability

Ongoing fights with family members and friends

Physical sickness

Ongoing headaches, digestive problems, chronic pain

Change in sleep and eating patterns

Loss of interest in people/activities you once enjoyed

Caregivers and Depression: Look for Warning Signs!

Feel need to hurt/yell at the person you care for

Depend too much on alcohol or drugs Prescribed pills

Increased inability to properly care for self ADLs Shopping, bill paying, cleaning, f/u

appointments

Caregivers and Depression: Look for Warning Signs! Important to consider

manifestation of depressive symptoms based on gender

Male caregivers deal with depression differently Less likely to admit and get

diagnosed More likely to self-treat Fewer support people

Coping Mechanisms to Deal with Depressive or Anxious Symptoms: PMR Breathing Retraining Guided Imagery Proper nutrition Exercise Scheduling of pleasurable events Interpersonal Psychotherapy Medication

Coping Mechanisms to Deal with Depressive or Anxious Symptoms:

Cognitive Behavior Therapy

Play detective or scientist Daily Mood/Activity Records Thought-Tracking Forms Overcome negative self-talk: “both/and” thinking Dichotomous thinking

Ask for the help you need Accept help that is offered What does it mean to you as a person to need to ask

for help? You can’t ‘fix’ this! Recognize and accept that you have the RIGHT to

time off

Practical Strategies to Reduce Caregiver Stress: Check in on your physical health

Sleep changes

Appetite changes

Aches/pains

Headaches

Stomach

Joints

Fatigue

Communicate with your physician

Ask questions, record important information, bring family members with you to appointments or sit in on phone calls

Practical Strategies to Reduce Caregiver Stress:

Make a list of all individual caregiving-related tasks for the purpose of delegating

Utilize all aspects of your social support network!

Identify tasks that are easier to ask for help with than others:

Running Errands

Household Chores

Providing occasional meals

Carpooling/babysitting

Practical Strategies to Reduce Caregiver Stress:

Gather information from your HR office (Family and Medical Leave Act)

Keep an emergency contact list with you at work of information, doctors and resources

Practical Strategies to Reduce Caregiver Stress:

Continue (but revise) family holidays, celebrations and cultural/family rituals Need for ongoing human connections and support!

predictability rather than ambiguity.

Importance of planning for the future, as this leads to new things to hope for From a TV show you enjoy every Friday to a scheduled

outing once per month with a friend

Areas of Consideration within the Family Unit Revision of family roles

Traditional roles/unspoken rules Across generations

Awareness of family rules “We will always take care of our

family.” Are certain family members

‘excused’ from caregiving and why?

Not a “One Size Fits All Approach”

We must take into consideration caregivers’ unique characteristics when implementing or offering caregiver programs with the goal of reducing burden:

Cultural/Personal Factors

Who is caretaker? (adult child vs. spouses)

Resiliency of caretaker

Education of disease process

Race, sex, gender, level of acculturation

Needs differ based on

Financial situation

Employment situation

Education

Existing support network

Culture

Ask For Help!!! Take steps before you reach a crisis

point. The Catch-Up game Asking for help does NOT make you

WEAK

.. Build yourself a safety net…

Overview of Various Types of Caregiver Support and Interventions:

Workshops Support Groups Psychoeducational Groups Psychologist Psychiatrist Problem Solving Skills Groups Individual

Counseling and Behavioral Training Family Therapy Care coordination/management Technological support (Teleconference, internet)

The past is in our memories, the future in our dreams, the present is our only reality.

Don’t let stress steal from you the present moment.

LET IT GO, LET IT GO, RELAX, RELEASE AND REVIVE