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How Caregivers Can Maintain Healthy Relationships: The Perspective of a Therapist with a Disability

Jenna Luzzo

Being a caregiver is a challenging responsibility. Add disability into the equation, and it can exponentially strain the commitment. Such relationships can, however, also be very rewarding. I understand the intricacies of the dependent-caregiver relationship because I have a physical disability and require daily assistance to maintain a healthy lifestyle at home, which has proved to be very helpful throughout my career as a therapist and life coach.

For parents, physical caregiving usually ends when their child reaches the age of maturation—around age 18. But this is not always possible for children with chronic disabilities, who rely on 24-hour care.

While physical disabilities may not affect the individual's mental capacities, their physical needs can still be that of a young child. For example, I am a 24-year-old working woman. But in order for me to get to work and see my clients, I must first have assistance with dressing, preparing meals, transportation, and other daily needs. While such tasks can, at times, feel taxing and overwhelming for my mother or any caregiver, it’s extremely important for caregivers to monitor their attitudes toward the individuals who receive care.

The attitudes, emotions, and mindset of caregivers are easily transferred to the individuals who need care, and can have a significant impact on their mood and the way they view themselves. Negative emotions from caregivers may leave people with disabilities feeling like a burden, which can be detrimental to their mental and physical health and recovery. Caregivers can minimize negativity by maintaining their own physical and psychological health.

One way for caregivers to alleviate stress is to develop a strong support network of family and friends that can lend a helping hand or listening ears when caregivers become overwhelmed. There is nothing wrong with asking for help; at times, it is necessary.

Caregivers must also maintain healthy relationships with their spouses, partners, and other children. Ignoring these critical relationships leads to loved ones feeling alone and withdrawing from the caregivers—causing further burden and isolation. Sadly, many couples separate as a result of the strain. To avoid this, caregivers and their spouses or partners should set aside regular date nights when they can enjoy activities outside the home or have a romantic night in. Caregivers should also schedule time to spend with their other children who do not have disabilities. As they often think of themselves last, caregivers need time for themselves. Support systems should be called upon to temporarily care for the individual with the disability so that the caregiver can take this necessary time.

Maintaining open communication is critical for healthy relationships between caregivers and those receiving care. They should feel comfortable expressing their feelings and find a balance between care and having as ‘normal’ a life as possible. Compromising on the timing of care needs allows both individuals to enjoy other activities. For parents, it is often difficult to suppress their natural parental instincts once their dependent children achieve adulthood. An individual who still need needs physical care may have grown to be mentally self-reliant and wants to make decisions independently, without feeling constant parental judgment.

In my experience, the constant reliance on my parents was very challenging during my teenage years. I felt that I had no privacy. In a way, I felt trapped. I saw my friends getting older and gaining more independence from their parents, while I was still being picked up from parties by my mother. Unavoidably, our relationship has been affected in both positive and negative ways. I have some negative feelings about my lack of privacy; my parents feel constrained about their inability to come and go as they please. As an adult, however, I am grateful for the sacrifices my parents have made to give me a good life. Because of our family dynamics, we are a stronger, more open family and communicate very well with each other.

Seeking therapy or counseling is helpful to learning how to cope with giving and receiving care and maintaining healthy relationships throughout the process. In family sessions, therapists act as mediators and help caregivers and individuals with disabilities communicate their needs and feelings to one another, so that both sides feel respected. Caregiving is best with a team. Learning how to come together, share responsibilities, and maintain equality of attention leads to positive outcomes in health and overall happiness. With the right system in place, caregiving can bring families closer than ever with a tremendous amount of love.

Jenna Luzzo, 24, is partner and head Life Coach at Sweet Serenity Life Coaching. Diagnosed with spinal muscular atrophy at a young age, she has a unique understanding of the challenges that individuals with disabilities and loved ones face every day. She treats clients across the United States via Skype and other internet technology. While she is one of the few therapists and life coaches in the nation who specializes in disability-related issues, she also serves clients without disabilities who have diverse needs. Jenna received her master’s degree in clinical social work from the University of Texas at Austin and is a Licensed Master Social Worker in the state of Texas. Jenna also volunteers for NMD United, a non-profit for individuals with neuromuscular diseases, where she serves as Counseling and Peer Support Coordinator. In her free time, she enjoys spending time with her boyfriend of two years, family, and friends.

Submitted by Kessler Foundation on Mon, 11/30/2015 - 13:59