When a love one is impacted by vasculitis, there is often need for ongoing support. If you’re helping your family member or a friend with vasculitis, you are a caregiver. This may mean helping with daily activities such as going to the doctor or picking up medications at the pharmacy. It could also mean giving emotional and spiritual support. In cases where the individual impacted may be a child or the disease is advance, it may mean coordinating services and care.
Providing support and care during this time can be challenging at times. You may find yourself in a new role as a caregiver. Although, you may have been an active part of the person’s life before, you may notice a shift in your role. The way you now support the person is different. It may be a way in which you have not had much experience, or in a way that feels more intense than before. Many caregivers put their own needs and feelings aside to focus on their child, spouse/partner or family member with vasculitis. This can be hard to maintain for a long time. The stress can have both physical and psychological effects. If you don’t take care of yourself, you won’t be able to take care of others.
Learn Caregiving Basics.
The tips below can help you:
- Educate yourself. Learn as much as possible about the type of vasculitis, treatment options and potential side effects. Find education materials and supportive resources. The more you know about vasculitis and what to expect, the more confident you and your loved one will feel about treatment decisions.
- Stay organized. Keep a record of medical history, test results and medications. Also, write down appointments, physician names and contact information, including the pharmacy number.
- Advocacy. Support your loved one in developing skill to articulate their needs, feelings and thoughts as they navigate the health and mental health system. It is also important that you also develop advocacy skills to effectively support your love one.
- Develop alliance with medical team. Good relationships with medical team is vital when dealing with chronic illnesses such as vasculitis. Find doctors who are experienced in vasculitis, are responsive to your loved one’s needs and concerns and who work as a team to provide individualized care.
- Be responsive. Don’t tell your loved one what to think or feel or how to act. Validate their feelings and concerns. Observing what someone is going through does not mean you know how they feel, or think or that you understand. Instead of saying things like, “I know how you feel,” try asking, “how can I support you now in this moment?” or just remind them you care. Create an emotionally safe space for your love one to feel comfortable to vent and be honest about their feelings.
- Prioritize responsibilities. It helps to make a list of daily tasks and prioritize what needs to be done. Space out activities and leave time for rest or rejuvenation. Remember that you don’t have to take over all your loved one’s life. Your loved one will probably wants to feel as independent and in control as possible.
- Make time for yourself. Care-giving can sometimes be isolating. It is OK to need time for yourself. Although it is easy said, don’t feel guilty about needing some time for yourself. Your loved one may also need space to be and to process as well. Take small increments of time for yourself each day. Self-care is vital to effective care giving. Take a walk, go for coffee with a friend, go to a yoga class, Tai Chi or Pilates class, get a massage, take a warm bath or listen to music.
- Know your limitations. It is not uncommon for caregivers to feel that they are not doing enough to help. Avoid taking on more than you can handle. You may be struggling to balance your care-giving duties, work and home responsibilities, do not be embarrassed to ask for help.
- Accept help. Do not be afraid to share the responsibility with others. When people offer to help, be specific about what you need. Also, some websites and apps provide calendars and other useful tools that can help you manage.
- Join a community. Staying connected with others in similar situation may help you feel less alone and provide much needed emotional outlet. Learn to share your feelings and concerns with family and friends. Join a caregiver support group, where you can talk about your experiences and exchange ideas and advice. Some online forums may help you feel connected with others as well. You should also consider speaking with a professional counsellor.
- Share your Journey. We have created a vasculitis Journey section where you can learn from other caregiver experiences, as well as share your journey.
NOTE: This information is not an exhausted list and is not intended to be a substitute for professional advice.