Episode #47: A Conversation About: Caregiving Part 1 My Personal Experience
March 10, 2025
The X-Podcast: Real Conversations About Mental Health
A Conversation About: Caregiving Part 1 My Personal Experience
Episode #47
In this episode, the X-Podcast team reacts to and discusses caregiving for parents at home versus institutions.
In this episode Xiomara and her team begin the podcast caregiving series. She tells some of her story detailing the personal experience she lived as a primary caregiver to her parents for 20 years. Xiomara gives real life examples and provides tips for caregivers that can help them manage their mental health through the process.
Xiomara discloses a little about surviving 9/11 s and how that experience led her to change the trajectory of her life by intentionally choosing to become her parents primary caregiver for the rest of their lives. She did so from 2003 - 2023, 20 years. She considers that decision to be her life’s labor of love. The team also discusses the money, insurance and family situations and implications involved in caregiving, including her personal story.
Some key points she discusses include how and why she took on the role of primary caregiver and what some of the experience was like. She discusses the benefits, challenges and consideration to choosing home care versus institutional care. Xiomara covers what the benefits and challenges can be as well as what types of institutions are options.
Other topics covered are factors to consider when choosing home care asn institutional care. She covers what caregiver burnout, the signs of burnout and how to manage caregiver burnout. IN addition, she discusses how to get support from others, how to deal with feelings of shame and resentment and what to do when feeling overwhelmed.
They discuss how and why we as family members take on caregiving. How different it is for everyone and the personal and professional sacrifices and adjustments we make to do so. Xiomara discusses how she was able to prepare for it in contrast to others who do not have that option.
They discuss the different norms in different cultures. The benefits and the challenges it takes to be a caregiver. It is an unpaid job. Major time commitment. Potential for caregiver burnout. The considerations such as constant assessment for the needs of the people you’re caregiving for and making important and scary decisions. Xiomara discusses the challenges as well.
Caregiving for parents at home or in an institution
Caregiving for parents can either be done at home, where you provide care directly in their familiar environment, or in an institution like an assisted living facility or nursing home, where professional staff take on the majority of caregiving responsibilities, depending on the level of care needed.
Key points about home caregiving:
Benefits:
Allows parents to stay in their comfortable home, maintain familiar routines, and potentially experience a greater sense of independence.
Challenges:
Requires significant time commitment from the caregiver, potential for caregiver burnout, and may necessitate hiring additional home health aides for complex needs.
Considerations:
Assessing the parent's needs, modifying the home for accessibility, coordinating with healthcare providers, and utilizing respite care services to provide breaks for the caregiver.
Key points about institutional care:
Benefits:
Provides professional care around the clock, access to specialized medical services, social interaction with peers, and potential for less caregiver burden.
Challenges:
It may involve a loss of independence, potential for feeling disoriented in a new environment, and possible cost considerations.
Types of institutions:
Assisted living facilities: These facilities offer support with daily activities like bathing, dressing, and medication management while allowing residents to maintain some independence.
Skilled nursing facilities: Provide more intensive medical care for individuals with significant health needs.
Factors to consider when choosing between home care and institutional care:
Severity of the parent's health needs: For complex medical conditions, institutional care may be necessary.
Parent's preference: Respecting the parent's desire to stay at home is crucial.
Caregiver's ability and availability: Consider the caregiver's physical and emotional capacity to provide necessary care at home.
Financial situation: Evaluate the costs associated with both home care services and institutional care.
What is caregiver burnout?
I want to mention Dr. Rebecca Kilpatrick, a clinical health psychologist at the Medical University of South Carolina (MUSC). In her article Ask A Psychologist: Navigating Caregiver Burnout with Expert Tips from Dr. Rebecca Kilpatrick, dated December 28, 2023, she defines caregiver burnout and offers a few tips on how to cope with it. I am referencing her article in this episode.
Caregiver burnout happens when a caregiver becomes overwhelmed by the stress of caring for another person. That could be a young child, it could be an elderly adult, or it could be a spouse or a partner with a health concern. Anywhere where someone is spending a lot of time and energy caring for another person.
What are the signs of caregiver burnout?
There are physical symptoms like exhaustion, fatigue, changes in sleep, weight loss or weight gain, and appetite changes. People also experience physical symptoms like stomach-related issues/GI upset, headaches, and other health issues they already have that are becoming worse. There are also emotional changes that include sadness, being overwhelmed, being easily annoyed, getting snappy, being angry, being irritable, and being overly emotional. A lot of crying /tearfulness and sadness come out of nowhere.
How to manage caregiver burnout?
Respite! Caregivers must schedule and be intentional about scheduling respite for themselves to manage burnout. This is different for everyone because it depends on individual caregiving schedules. For example, scheduling a day, a night, a weekend, or a week off from caregiving duties. This should be scheduled at least one month if not more, ahead of time. This gives you time to get a substitute caregiver to take your place. Make all the arrangements needed to take a break. You’ll be prepared to walk away for a needed break.
Support from others
Having support is one of the best ways to manage caregiver burnout. But it can also be a stressor. It helps to make a list of what you need, such as groceries, pet care, housework, chores, and respite caregiving. Have this go-to list ready for when anyone asks you if they can do something to help you. Assign them something from that list.
Feeling shame or resentful thoughts?
Caregiving can make you feel isolated. It can be a very isolating experience. Thoughts of shame, feelings of resentment, guilt, or shame can make the feeling of isolation worse. Sometimes even towards the person you’re caring for. Wanting to walk away from all the responsibilities. These are all very normal experiences and thoughts when caregiving.
Anyone struggling with that should try to find a support group with other caregivers. They also experience that. That helps you heal with them.
What to do when feeling overwhelmed?
Removing yourself from the situation if at all possible. Mentally or physically. Take a few minutes for a break to walk outside of the area you are in. Take a break from what you are doing. Intentionally breathe. If that's not possible, try to take a mental break. Download apps like CALM. Brief 30-second to 2-minute relation practices from where you’re sitting.
Have a few creative outlets that you can access. Some people like to color, listen to music, knit, or do anything with their hands. This lets your brain take a break from the situation if you have to remain physically there.
Xiomara A. Sosa
Creator, Host, and Executive Producer
#TheXPodcast #MentalHealth #Counseling #Therapy #Caregiving #FamilyCaregiving #CulturalNorms #MultigenerationalLiving #IntergenerationalLiving
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Resources
https://www.thex-studio.org/resources
Call or text 988 for the Suicide and Crisis Lifeline.
You can also call 211 to speak with a service professional.
Organizations
Family Caregiver Alliance: A community-based organization that supports families providing long-term care
Caregiver Action Network: This offers resources for family caregivers, including a Caregiver Help Desk
The National Alliance on Caregiving: A resource for help and connections
AARP: A resource for help and connections
Programs
VA Caregiver Support Program
Offers programs for general caregiver support services and comprehensive assistance for family caregivers
State Medicaid programs
Some states offer paid caregiver programs, also known as consumer-directed personal assistance programs
Services
211: A service that can connect callers to local assistance, including specialists
CarePages: Free web pages that allow caregivers to connect with friends, family, and others for support
Religiously-based services: Many religious and cultural groups offer support for caregivers
Other resources: The National Institute of Aging, The CDC, The American Cancer Society, The American Heart Association, and The Alzheimer's Association.
References
Dr. Rebecca Kilpatrick, a clinical health psychologist at the Medical University of South Carolina (MUSC). In her article Ask A Psychologist: Navigating Caregiver Burnout with Expert Tips from Dr. Rebecca Kilpatrick, dated December 28, 2023
There are many resources available for caregivers, including organizations, programs, and services.
