A Caregiver’s Advice on Caregiving
When I asked Allison, the caregiver whose husband has chronic migraine, how she takes care of herself and what advice she has for other caregivers, she responded with this David Letterman-style top 10 list. (The rest of the interview is published as A Caregiver's Perspective.)
#10: All of life is a process of letting go.
I have learned to let go of societal expectations of what normal is. I have learned to let go of anger, let go of control, let go of toxic people, let go of the plans I had made for us. Embrace simplicity.
#9: Be grateful.
Suffering is universal. 100% of people will suffer, hurt, be angry, be disappointed. I look for little things that are beautiful. Everyday, I practice this. Initially, it was really difficult because I was so overwhelmed but it did get easier. There are still days when this is difficult to do but I have now developed automatic ”things I am grateful for.” This is cognitive behavioural training. We can train our minds to stop negative self-talk and internal dialogue.
#8: Have respite.
It took me many years to be able to leave my husband alone. Two years ago, he convinced me to go to Spain and England with my sister to visit some family members. It would be a once-in-a-lifetime trip. I was terrified of going. I was worried about what would happen to him, who would get the groceries etc… The list of "what ifs" was long. But my biggest fear was that I would find out I liked my life better without him in it. How wrong was I!!! Absence truly made the heart grow fonder!!! With modern technology, he shared the whole trip with me, when my sister got hoodwinked in Seville, when we celebrated Easter in Madrid and when we reunited with a long-lost sibling in England!
It is important for caregivers to go away and rest, do other things. The migraineur feels guilty, for being a burden, for holding us back. When they ask us to go, go. But while we’re gone, check in. They are not upset that we are carrying on. They are just upset their disease prevents them from sharing that experience with us. Recognize that their letting us go is an act of love.
#7: Get help.
It took my 89-year-old widowed patient who was living on his own to make me realize it was ok to get help. He cared for his wife who had dementia until her death but he did so with the help of a housekeeper. After her death and with his own impending ill health, he continued to have his housekeeper come to help with meals etc… After an office visit one day, he gave me her number and said emphatically, ”She is waiting for your call.” Just like that, I realized what an idiot I had been, trying to do it all on my own.
#6: Make dates with friends
This disease isolates us. We can’t socialize. And when we can, we are so darn exhausted we don’t want to. I don’t have many friends who have walked this journey with us, mostly because I have moved around so much with school and jobs and also because living in a small town as a female family doctor tends to lend itself to attracting gossipers intent on getting into my practice. It’s also hard to make new friends who are willing to be stood up at any time because my husband can’t even get out of bed, let alone go for a hike! It makes it even more imperative that we cherish the friends from our past. I make monthly Skype dates with my two girlfriends. We catch up for 30 minutes, while they are screaming at their kids to get ready for bed or they are trying to bake a cake and talk to me. My husband has two childhood friends who will meet him for a donut or go to the hardware store together and buy some nails. These simple acts of friendship sustain us.
#5: Pace yourself. Reprioritize.
When I get all tizzy because the list of things to do isn’t done, I ask myself this question: If there was a massive earthquake right now and we are all dead, will having a spotless kitchen floor at 11 p.m. at night really make a difference to my quality of life?
Enough said. Sometimes, we just need to let go of our plans. See #10.
#4: Move your body. Stretch frequently. Take a deep breath.
I try to walk 20 minutes every day, even if it is to get mail at the hospital or park the car at the end of the Walmart parking lot. Thankfully, our beloved shih tzu is always up for a walk so sometimes, after I get home from work and my husband is up to it, we will put a casserole in the oven, leash the dog and go around the block. Stretch throughout the day and right before bed. Breathe. It’s amazing how much tension we store in our bodies.
#3: There are 3 parts of ’self’ to tend to: physical, emotional/mental, spiritual.
Every single human has these parts. We all wonder why this is happening to us. We all want to know why we’re here. These are universal questions. Before I became a Catholic, I always thought you had to be religious to pray. Who do you pray to if you don’t believe in God? A prayer is just a dialogue, a journal entry, a thought, expressions of our own struggles… It doesn’t matter. What matters is that we recognize that we have a spiritual yearning which cannot be explained or quantified. That’s why it’s called faith. In all my interactions with patients at the end of their life, agnostic or atheist, religious or not, fanatic or not, every single person has a spiritual yearning magnified during times of death and suffering. Take care of your spiritual being. Pray, whatever shape or form that might mean for you.
#2: Give yourself permission to be human.
I am allowed to mess up. As I have eluded to in my previous posting, we are so hard on ourselves. I now tell myself not to beat myself to a pulp since the world will gladly do it for me in due time.
#1: Love tenderly.
This applies to ourselves and our loved ones. For me, when I made my marriage a priority, everything else fell in place. Loving tenderly does NOT mean we do EVERYTHING for the other person since this leads to anger and bitterness.
Have you taken our Migraine In America Survey yet?