The six caregiving advocacy tips I’m learning all over again come with compliments from my mom. She’s 92 and still teaching me life lessons by the bucketful. She’s experienced some health challenges over the past few months, so we (my older sister, younger brother, and me) are advocating on her behalf.
This isn’t my first advocacy rodeo. My husband and I were thrust in to that role in 1982 when our firstborn was diagnosed with a life-threatening birth defect. We were his voice and his caregivers for four intense and sometimes terrifying years until his health stabilized. During those years, we gradually discovered six caregiving advocacy tips. They worked on his behalf then, and they’re working on Mom’s behalf now. Which goes to show, as I’ve said before, that caregiving is caregiving is caregiving.
Tip #1
Write everything down. From the beginning of whatever health issue you’re dealing with. A sentence or two may be all you need, along with the date, to keep track of what’s happening. Things to document include how your loved one feels, vitals, conversations with medical personnel, voice mails left, etc. Record everything, preferably in an electronic format, so it’s easy to copy, send, update, and resend as needed.
Tip #2
Be a squeaky wheel. One advantage to writing things down is that you know when someone hasn’t returned your call or email after a day or two. Or an hour or two, depending on the urgency of the situation. Because you have it written down, you know when it’s time to become a squeaky wheel. In other words, call again after a reasonable amount of time. “Reasonable” could be a day or two after someone promised to get back to you, or sooner, only if the situation is urgent. If your second call or email doesn’t garner a response, become an even squeaker wheel with daily calls or emails. During all of this, keep recording everything.
Tip #3
Tag team with someone. When our son was little, my husband and I took turns contacting whoever needed contacting. These days, my brother, sister, and I take turns advocating for Mom. Sometimes we divide up duties. Other times, if one sibling is going to be out of town, the others take over, which is another reason to write everything down, so everyone can advocate from the same bank of information.
Photo credit: Kampus Production on Pexels.com.
Tip #4
Let go of something. When caregiving and advocacy are the top priority, letting go of something is a good idea. For me that means fewer blog posts, less time on social media, and less time cleaning my house. I don’t know what letting go will look like for you, but frankly, I’m okay with less dusting and more dust.
Tip #5
Get away. A few weeks into this latest advocacy gig, things were moving too slowly for my impatient, get-things-moving personality. I was about to cancel a long weekend to visit our son and DIL to move things forward. My brother put the kibosh on that in no uncertain terms.
“Get away,” he said. “You need a break.”
“Okay,” I said.
He was right. The break did me a world of good and made no difference in moving things along.
When our son was little, we couldn’t get away for a long weekend. But some friends babysat him while we went out to dinner and a play. It was wonderful and did us a world of good.
Tip #6
Broaden your perspective. Take a mental step back so you can see beyond your immediate situation. Look around to find other people who have lived through a similar caregiving situation. Then call them and ask for advice. Look up, and remember that you are not alone, no matter how alone you feel in the moment. Pray. Breathe. Cry. Regroup.
Once your spirit has settled and calmed, remind yourself that, as my mother who cared for my father for 38 years used to say, this too shall pass. Which makes 7, rather than 6 caregiving advocacy tips I’m learning all over again. But who’s counting?
Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She's also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.
