Transitioning into a caregiver role
When you move into the role of caregiver there will be shifts in relationships as you take on additional and sometimes nontraditional roles. The family dynamics can also shift, which may leave you feeling off balance. It is important to note that not only will your role change, but your loved one with lupus may feel as though his or her role has been minimized or altered to accommodate the diagnosis. To make the transition easier, everyone in the care relationship needs to communicate and have patience.
In order for you to take on new responsibilities and priorities you may need to delegate your usual responsibilities to other family members. To do so, you and your family will need to redefine what your “normal” is in terms of roles in the family and priorities. It is important to work to embrace and accept these changes. For example, certain household responsibilities which may have fallen solely on you may need to be a collaborative task. Make a calendar of chores and tasks with assigned roles that everyone can follow. Allow your loved one with lupus to take on any roles and responsibilities they can manage in order to reestablish their “normal” and make them feel included.
Another change can happen when your time and attention is shifted more to your loved one with lupus: your other family members, especially children, can feel neglected. As a result you may feel guilty or overwhelmed with splitting your time. You should try to set aside specific times to spend with individual family members—to help with homework, to have some fun, or to just relax.
Keeping the lines of communication open
By having open and clear communication you can emotionally support one another by voicing your concerns. Care receivers and givers alike are content when there is some sense of normalcy. By being patient and learning to listen to each family member, you will gain the skills to transition well into caring for a loved one with lupus.
Toolkit for caregivers
This toolkit is designed to provide you with guidance, support, and advice, whether you have been a caregiver for just a few days, or for several years. The following topics are included:
- Self-care and setting limits
- How you can help
- Managing finances and legal matters for your loved one
- Helpful forms and templates for tracking vital information