Care Partners — What the Migraine Patient Wants You to Know
Dear Care Partners;
Caregiving when your partner or loved one has an illness such as Migraine or chronic Migraine can be difficult physically, mentally and emotionally. If you’re a spiritual person that too can suffer as you think “This is not what I signed up for” and contemplate why this has happened in your life.
Care partners diligently work to make their partner or loved one as comfortable as they can while simultaneously trying to live their own life and possibly care for other family members. This is not an easy task, but can be very rewarding for them and life saving for their patient.
My perspective is both as a patient and as a caregiver and care partner. Not only do I have chronic Migraine and other health conditions, but my kids grew up with serious health issues including Migraine and other disorders to which significant stigma and misunderstanding were attached. I also left home to care for my 90 year old blind and disabled Grandfather for a short time months before he passed away.
Patients want to feel:
- Validated. They want to know you believe them when you talk to them. To patients, belief often equals acceptance. They want to know that if you don’t understand, you will ask questions and talk things through. They want to know that you won’t second-guess their experience and what they choose to reveal to you, because the outside world who misunderstands them often mistakenly chooses to judge them and dismiss them. Advocating for the patient during doctor’s appointments is just one way you can be sure your patient feels validated.
- Understood. The most important thing for a care partner to understand is that… you’ll never understand. You may learn to understand the medical condition, but you can’t understand what the patient is going through, no matter how desperately they want you to understand. Knowing how someone is hurting is essential, but understanding it isn’t. It is not actually important that you understand how they feel, but it is vitally important to treat them the way they need to be treated. Listen to them. Ask them what you can do to make them feel better, and make sure the lines of communication are open enough the patient feels they can ask you for what they need – a hug, or to just lay down with them… or even to leave the room. Never underestimate the emotional power of a touch. The job of care partner involves many things, but making sure the patient’s physical needs are met is probably the easiest.
- Loved despite the burden they place on you. Patients often feel unlovable. They realize the burden they’ve placed on your shoulders. They may become withdrawn and depressed, or overcompensate in other ways as a result. This can backfire when the care partner doesn’t recognize that’s what has happened and reacts unfavorably. Making a concentrated effort to establish and maintain lines of communication can’t be overstated. When this effort is made, the patient feels they’re worth your time and attention.
- Listened to. Being sick creates enormous stress and frustration, and that needs an outlet. You may be the only person the patient sees each day in which they feel confident enough to open up about how they’re feeling. Sometimes you’re a brick wall for them to bounce their thoughts off, and that’s okay. You’re not necessarily being spoken to because the patient expects a quick fix or a solution, but simply because they just need to hear their thoughts spoken out loud and someone to listen to them. You don’t need to express your opinion on their every thought. Just BE there for them.
- Worthwhile. Patients want to feel that they’re still worth a place in your life. This may create a perception of neediness, or the opposite — it may create distance because they’re disappointed they no longer feel they are someone you want in your life. Remember: being care partners is an equal partnership. Let patients do for themselves what they’re able, when they’re able so they can feel a sense of dignity and accomplishment. Encourage them to have outside activities and things that bring them joy and make them feel a part of life in general. Remind them each day how much you love the time you share together. Avoid letting the patient assume you’re just waiting out their illness and the time they can get back to their old life. Don’t delude yourself into thinking that your actions show the patient how you feel. Instead, think of something that gives you a sense of awe — perhaps holding a Stradivarius violin or touching DaVinci’s brush strokes on the Mona Lisa — then apply those feelings to the patient. They have many reasons to feel unworthy of your time, attention and efforts, so remember how blessed you are to be in their company, and then tell them.
Thank you so much for all that you do for the Migraineur in your life. Migraine has a great deal of misinformation attached to it resulting in stigma. You can help take away some of the feeling of that burden by being there for your loved one. Yes, it’s hard work to be a caregiver and hard work to be a patient.
You are partners, and sometimes remembering it is that kind of relationship will help get you through the tough times.