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Writer's pictureJacqueline Ulissey

Self-Care and Self-Compassion: Caregivers of People Living with Alzheimers and Other Dementias

Jacqueline Ulissey, LMSW


Introduction

In this article I list several common experiences shared by family caregivers, the effects of prolonged caregiver stress, and how caregivers can access support. This article is written in list format to keep things brief and easy to digest. The focus of this article is on caregivers who are struggling in their role and need some guidance. I will likely write a separate article detailing the positive aspects of caregiving. Resources are both online for all and in person for residents of Denton County. Also a master licensed home care social worker, I can provide one on one support to family caregivers through psycho-education, short-term counseling, and connection to community resources. You are welcome to start a supportive conversation in the comments.


Family Caregiving Experiences Leading to Burnout

  • Difficulty adjusting to role as caregiver.

  • Anxiety about care recipient's declining health

  • Guilt related to feelings of anger about having to be responsible for loved one

  • Feelings of loneliness

  • Anticipatory grief

  • Difficulty understanding dementia process

  • Exasperated dealing with loved one's behavioral changes

  • Disagreement between self and person being cared for

  • Family arguments about best type of care

  • Worried about how to pay for care

  • Resentment for needing to care for loved one at expense of doing other things

  • Not enough time or energy to care for self

  • Overwhelmed with amount of caregiving responsiblities


Examples of Family Caregiver Burnout

  • Fatigue is an early warning sign

  • Not getting enough to eat and sleeping too little

  • Symptoms of depression and anxiety

  • Poor physical health, bodily aches and pains

  • Becomes irritable with care recipient.

  • May become abusive or neglectful.

  • Can't find any joyful moments in caregiving

  • Copes by using drugs and alchohol

  • Explosive emotions

  • Apathetic and lacking empathy

  • Dwelling on other persons's suffering

  • Self-blaming

  • Difficulty concentrating

  • Relationship strain


Support Strategies

  • Create self care plan. This has to happen first. Doing this alongside a social worker or therapist can help.

  • Schedule time every day to focus on your own needs. If it seems impossible start small with just 10 minutes before loved one wakes up and 10 minutes after he or she falls asleep.

  • Set reminders to take care of self.

  • Ask for help from family and friends

  • Hire caregivers or respite care

  • Manage expectations

  • Join a support group

  • Seek educational opportunities to learn more about your loved one's disease and how to care for them

  • Write down the small and big wins for the day.

  • Work on changing thinking errors like discounting the positive and catastrophizing

  • Remind yourself that you are doing the best you can


Resources

Online


Preventing Caregiver Burnout and Compassion Fatigue: DBSAlliance


Free Webinar Courses by Caregiver Expert Pamela D Wilson


Family Caregiver Alliance


Private Facebook Support Group for Family Caregivers


In Person


Dementia Caregiver Group

2nd Wednesday, 11:30 AM- 1:00 PM

Denton Senior Center


Stepping Stones

First Wednesday of every month from 10AM- 12PM at Trinity Presbyterain


Alzheimer's Support Group

Willow Bend Assisted Living Denton

Third Tuesday every month, 3:00PM-4:30PM


Select Rehabilitation Hospital

Support group for both patients and family caregivers

Second Thursday every month, 5:30PM- 7:00PM

See link for contact info to RSVP

https://www.selectrehab-denton.com/patients-and-caregivers/your-experience/support-groups/



This is not an extension list of support groups in the area. You are welcome to leave support group information in the comments section.

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