Choosing Care with Care: A Guide to the Right Caregiver
Hand cupped holding small white flowers.
By Arielle Dance, PhD -Writer, Diversability
Caregivers often give their energy, skills, and time selflessly. A caregiver can be a family member, partner, friend, or a paid supporter. According to the National Cancer Institute, “a caregiver is a person who gives care to people who need help taking care of themselves.” In addition to seniors and children, patients with chronic illnesses or are disabled may need a caregiver.
Four disabled adults, Arielle Dance (she/her), Emma Farley (she/her), Lala Shanks (she/he/they), and Victoria Wheeler (she/her), members of the Diversability Leadership Collective, share their gratitude and advice for their caregivers. Although the experiences of each person and their caregivers are not generalizable, it is important to elevate caregivers, the thankless work they do, and how people like to be supported by a caregiver.
Selecting a caregiver
“Caregivers may be health professionals, family members, friends, social workers, or members of the clergy. They may give care at home or in a hospital or other health care setting.”Knowing who will be the best person to support during a health crisis or long term disability can be a difficult decision for some. In some cases, the person who needs care will choose a person they have an established relationship with as their primary caregiver; in other situations, additional hired care is needed.
Arielle, who lives with endometriosis and adenomyosis, is cared for by her mother and wife. “My mom has been my primary caregiver since I was first diagnosed at 15. She has never missed a surgery. We have traveled hours away from home for the best care, and she's always there!” Emma was born with a rare form of muscular dystrophy called a collagen VI-related dystrophy (COL6A1-RD). She selected a paid aid that she has access to through Medicaid services she receives. Lala lives with multiple disabilities and uses several mobility devices. They are grateful for their partner who is the primary caregiver. Like Arielle’s partner, Lala’s partner has supported through flare ups for years. Victoria, a power wheelchair user with cerebral palsy, previously used a caretaking agency but they could not accommodate her needs. After the hardship of maintaining care, Victoria’s partner became her primary caregiver. “Yes, it puts some extra work on him, but I am much healthier and safer both physically and mentally because of it. We revisit the topic of hiring outside support from time to time.”
Ways a caregiver can support
Caregiver tasks vary based on the needs of the person they are caring for. Typically tasks may include:
Bathing
Preparing meals and feeding
Organizing and helping with medications/medical devices
Emotional support
Household chores/errands
Transportation to appointments or other errands
Situating bed, pillows, and comfortable environment
Arielle shared that her wife is especially supportive during flares and surgery recovery. “My wife stands in the shower with me,holds me up, and helps wash my hair… she cooks meals, drives me to appointments (and anywhere else if I can't), and listens to my concerns.” She is grateful for her caregivers who hold her while she cries or vents in frustration. “Sometimes I apologize because I feel like I am a burden or because I am embarrassed (for just being vulnerable). They are quick to remind me that they love me and this embarrassment is a slight blip in my healing process.” Similarly, Victoria’s caregiver cooks meals, does the laundry, and helps her shower and dress. Emma appreciates that her caregivers are flexible to accommodate her needs.
Qualities that are appreciated in a caregiver
Caregivers’ skills, attentiveness, and compassion are greatly appreciated. The needs of every person are different and the way their caregiver supports them varies. These are the qualities that people admire in their caregivers.
Flexibility
Encouragement
Reading emotions and capacity levels
Anticipating needs
Asking how they can support
Affirming
Provide love and safety
“I love that they encourage my independence but hover just in case I need help.” - Arielle Dance
“They are really good at reading my emotional and physical capacity levels without me having to communicate that to them; and they are very receptive when I do communicate with them. They reassure me and affirm me when I’m feeling emotionally unwell, stressed and depressed by my illness.” - Lala Shanks
“He makes me feel loved and safe in a way that I’ve never felt with my parents/family members or past romantic partners.” - Victoria Wheeler
Expressions of gratitude
Showing appreciation to those who provide support and care is a special part of living with a disability. Ways to show appreciation:
Words of appreciation and affirmation (verbal or written)
Affection (hugs/kisses)
Appreciation meal (taking caregiver out for dinner)
Gifts of gratitude
Offer grace when caregiver needs a break or support
Ask how they are doing
Emma turns to compassion when she expresses gratitude. “I say thank you, I am flexible with her schedule, and I check in with her and ask if there's anything about the role she's finding to be too difficult/if there's something I can do to make her job easier.” Similarly, Lala shared “I show up for them in the ways that are in my capacity. I spend intentional quality time with them, offer words of affirmation and support them with needs, goals and interests they have.”
Caregivers are a vital support to disabled people. Whether they are loved ones or hired professionals, they are appreciated for the work they do. When selecting a caregiver, remember to seek out the characteristics you want, communicate effectively about your needs, and express your appreciation for their support.