FULL-TIME CARE

Many raregivers are in paid employment when they start caregiving. Trying to balance caregiving with paid work or employment looks different for everyone. In order to find this balance, some raregivers reduce their working hours, seek work with flexible leave, or stop working altogether. These changes in access to work often reduce income, weaken work-placed ties and friendships, and can affect productivity at work. 

Relationship Impact

Becoming the main caregiver in a family often redefines relationships between children, spouses, and wider family. In addition, many rare diseases are heritable but unpredictable, leading to anxiety about how and when the disease could affect other family members. The demands of caregiving also limit the time and opportunity for leisure, social activities, and contact with friends and relatives, which is likely to increase emotional stress.  

Need for/seeking social support

Raregivers often provide ongoing care with little or no break. But the enormity of responsibilities as a rare caregiver can feel overwhelming, as can the burden of carrying the feelings and worries of other family members. Social and emotional support can be valuable in helping raregivers to emotionally recharge, build relationships with others, and find validation. Respite care from peers or community/rare disease organizations can help to restore balance and open opportunities to cultivate leisure and social activities that bring pleasure and increase contact with friends and relatives.

Emotions: Isolation, Insecurity, “Advocate”

The loss of work and colleagues can have a profound impact on how raregivers see themselves, as well as how others see them. The time, emotions, and energy that caregiving requires can result in depression, social isolation, and relationship strain. 

Caregiver Support: Developing Self-Care Skills

• Healthcare providers are sources of information about available psychological support. 

• Coping and self-care practices such as physical activity, journaling, and yoga have also been shown to have a positive and protective impact on mental and emotional health.