Tips for Caregivers From Someone Who Wouldn't Be the Same Without One
From keeping up with symptoms and triggers, doctor’s visits, and medications, to offering emotional, physical, and intellectual support to folks living with constant pain, caregivers often give so much and are often acting selflessly for the benefit of others.
For this reason, it is important for folks who fill this role, either professionally or by proximity to someone living with a chronic disease or illness, to be well-equipped and prepared with resources. Here are a few tips I would give to caregivers, based on my relationship with my own, as well as from a patient perspective.
It is so important for caregivers to be intentional about the care they give, and to be open if they are not ready, willing, or well-equipped to fill the role of being a caregiver.
Sometimes, by being in close proximity to those of us living with chronic pain, people in our lives can circumstantially become the default carers---maybe they are a partner who was there before the migraines became chronic, maybe they are a parent or a child who wants to care for us but doesn’t know where to begin. The people who are naturally close to us are not default caregivers, and folks should have and make a choice to fill this role, so as to avoid burdensome feelings of resentment or as if there was no choice.
This can be immensely difficult, for both the caregiver and the patient, but I think this is in an area where open and honest communication about what roles people in our lives fill is necessary for the best care. If someone chooses to intentionally fill the role of being a caregiver in the life of someone dealing with a disease, they should also approach the role with intention, learning what they can to give great care, and being flexible in growing with the patient.
Caregivers also sometimes fill roles that may not be easy or comfortable for themself, and this is a consideration that folks who fill this role have to honestly sit with.
Be in the moment
I know that my caregiver has to be alert and attentive often when it comes to making sure that both of us are well taken care of and safe. Sometimes they have to make fast decisions in situations where I can’t make decisions myself.
I think it is important for caregivers to look at the circumstances in front of them and act accordingly. Being able to make decision for two or more people that is in the interest of all involved is a skill that takes honing in on.
Migraine can be unpredictable. Sometimes what works and has worked for a long time doesn’t anymore. Sometimes new triggers arise, or old ones evolve. It is important for caregivers to be flexible in their care because migraine is variable and changes over time.
Caregivers also give a lot in the way of their own scheduling when it comes to being attentive to and caring for folks living with migraine disease. Being flexible while still drawing appropriate and healthy boundaries upfront can help in the development of a healthy caregiver-patient relationship.
Listen, but also lead if needed
Sometimes patients want to do something that caretakers know may cause them to feel ill. Sometimes I want to go out into the blazing hot sun during the warm months and experience the beautiful plants and wonderful lively sounds of the summer, even though I know that it is likely that the combination of heat, sun, loud noises, and allergens might act as a perfect mix to trigger a migraine. It is up to my caretaker to listen to me and to ultimately engage with me in a way that respects my autonomy and desires while also being attentive to my pain and disease.
My caretaker is the king of gentle reminders for my consideration in times like this, and I make the choice. I also have to consider the kind of impact my choices may have on my caregiver, and it can be complicated because our interactions are intertwined. Other times, I clearly need the kind of care where they take the lead on decision-making like when I can’t get out of bed or feed myself because moving hurts too much. This requires them to take the lead and lean into what they know about me and migraine to help us both through.
Folks living with chronic pain can always use kindness. When pain takes up so much bandwidth and so often, kindness and caring in the form of affirmations and kind actions can make all the difference. Striving to be kind is a form of care.
Know your worth
You deserve kindness, too. Knowing your worth and standing up for yourself as a caregiver is as important as folks living with pain to do the same. Caregivers are people with pain, needs, and desires of their own, and knowing that and advocating for yourself is also a key part in my opinion of developing healthy relationships with folks living with a lot of pain.
Are you a person living with migraine disease who has tips for caregivers? What are they? Are you a caregiver who has tips for others who fill that role? What advice would you give to others who are also caregivers? Let’s discuss in the comments!
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