By Christi M. Lero, MSW, LCSW, CSW-G, Therapist, Hospice & Palliative Care Social Worker

I have seen it time and time again in my work as a hospice and palliative care social worker. The similarities between the person with dementia and their caregiver are clear. They will likely both forget my name and what I was there to see them for. Sometimes this happens before I leave. They may not be able to put their thoughts into words but will communicate their confusion, pain, or feelings of being overwhelmed by the look in their eyes. Both have difficulty understanding and expressing their emotions. Caregivers can become invisible second patients.

Caregivers are “The Invisible Second Patient”

So often, people who care for someone with a form of dementia are called the “invisible second patient.” Caregivers of people with dementia give themselves to others, mind, and body. They help their loved one maintain dignity and independence in the face of a disease that violates the basic components of what makes us human. This work is often unpaid and takes such a physical and psychological toll on caregivers. They often experience a decline in their own health that, unfortunately, goes untreated. The feelings of being overwhelmed can lead to memory loss, fatigue, difficulty engaging with others, isolation, depression, and anxiety.

Often times the focus is on the person living with dementia, and the needs of the caregiver are forgotten or pushed aside. They are given business cards for people who want to help. They hear cliché sayings like, “take care of yourself.” But they don’t have the time to take care of their needs. In reality, they can’t even find the time to do what others take for granted. For example, they don’t even have the time to go to the doctor, exercise, or make a healthy meal.

Caregivers Frequently Experience the Following Hardships:

Having to be Constantly Vigilant

As the needs of the person living with dementia change, so will the needs of the caregiver. The less independent someone with dementia becomes, the more they rely on their caregiver. For example, they may rely on their caregiver for food preparation, and removing rugs from the floor for trip hazards. They may also rely on them for things like lifting for bathing and dressing, and walking. Their caregiver has to be constantly vigilant. They have to pay and attention to slight changes in ability like swallowing or speech.

The Need for Routine

Routine, routine, routine. Routine and familiarity are helpful for those living with dementia. Having a routine and some idea of stability is helpful for caregivers. In what can feel like a chaotic day-to-day life, a routine brings normalcy and calm. This is why it is important for caregivers to be able to schedule regular self-care into their weeks.

The Need for Support

Reliable and consistent support. Caregivers rely a lot on their community for support. Not just emotionally, but for respite (relief of caregiving duties for a brief time). Having a break from caregiving, however brief, is critical to the health and well-being of the caregiver. In order to get a break, there needs to be someone to assist the person living with dementia. This can be family, friends, faith-based groups, private agency help, or even brief stays in care facilities.

A Fear of Asking for Help

Caregivers rarely ask for help. Maybe it is to avoid feeling like a burden. Or maybe it is to avoid shame or asking others to face the realities of dementia. Sometimes they are attempting to appear strong or stoic. Whatever the reason, caregivers rarely reach out to others for help or support until they are burnt out. Or experience some type of event that highlights their need for assistance.

How We Can Help Caregivers:

We need to meet caregivers where they are in their journey. Caring for someone with dementia is a full-time endeavor that taxes the well-being and health of caregivers. Creating awareness of these challenges and providing non-judgmental space to explore resources is one way we can support these invisible second patients of dementia.

If you are caring for someone living with dementia and you find yourself in need of self-care but do not know where to start, please do not hesitate to reach out to Aspire Counseling. Counseling can help you, so you can help them. I provide counseling for caregivers and a non-judgemental space for you to talk about the challenges of caring for someone you love.

Begin Counseling for Caregivers in Columbia, MO

If you are feeling overwhelmed caring for someone you love, then counseling for caregivers can help! To begin counseling in Mid-Missouri please follow these three simple steps:

1. Contact our therapy office to speak to a care coordinator,

2. Schedule a free in-person consultation meeting with me,

3. Learn useful self-care skills so you can care for the person you love.

Other Services Offered at Aspire Counseling

At our Mid-Missouri mental health clinic, we believe healing begins when you look past hurts, current obstacles and future worries directly in the eye and can confidently say, “I’ve got this.” Therefore, our caring counselors provide a variety of mental health services designed to give our clients the tools they need to achieve emotional wellness. Our counseling services include counseling for caregivers, counseling for chronic illness, postpartum counseling, grief and loss therapy, counseling for teens, counseling for college students, counseling for adults, trauma and PTSD therapy, EMDR therapy, counseling for sexual assault and rape, anxiety therapy, counseling for depression, LGTBQ affirming counseling services, and Dialectical Behavior Therapy (DBT). Additionally, our blog features information on a variety of mental health topics from our wonderful counselors. To learn more about our therapy services, please contact our Columbia, MO counseling office!

About the Author

Christi Lero is a hospice social worker, helps do research on ways to better support caregivers of cancer &/or hospice patients and provides individual therapy to clients at Aspire Counseling.  She specializes in helping during moments of major life transitions. For instance, she enjoys helping people move through grief, find hope while providing care for a family member with a chronic illness and helping moms transition into being a parent.  Christi provides a safe space and support while you explore your feelings & values as you find a new path forward.