The Life of a Helpmate
Last updated: February 2023
I may be in the minority here by coming at this topic from the other side of the fence but maybe someone out there may find some benefit to our story. Some may call me a caregiver but it's much more than that, it's a life helper; a helpmate is a good term I think.
A complete 180
I have watched my bride transform from someone who loved the spring and fall of our Appalachian community when she could hike multiple times a week, jump in cool streams to fish for trout, drive in and hike our National Parks, etc to a lady that rarely can go outside and most of her days are fighting sleep, having the inability to use portions of the left side of her body, and striving to maintain a fulltime job working from home on a double-screened PC.
New to us
Neither of us had ever heard of hemiplegic migraine until 2016 when an emergency department head doctor took me aside and told me that, while my bride did not have a stroke, she probably has hemiplegic migraine. At the time, she had the classic stroke symptoms; one-sided face droop, inability to speak clearly, and partial loss of the ability to use one side of her body. I was scared to say the least, however, the blessing was that my wife had no memory of the ordeal.
The reality of a migraine caregiver
Since those early days, I have had another blessing bestowed upon me in that I was able to retire from work and have the ability to be home with her daily. We have had our ups and downs in these 7 years, yet we both refuse to give up trying to understand one another when we communicate as she goes through these episodes.
For those out there that are caregivers, you know it's tough; you feel like you are living with someone that has dementia, paraplegia, partial blindness, ataxia, aphasia, and bipolar disorder... all at once. Hemiplegic migraine can manifest itself in our home as a level one where she feels tingling on one side of her face to a ten where all of the aforementioned conditions happen at once... and those are definitely life-threatening.
Finding support and providing support
The good news is that there are organizations such as this one and others where we caregivers can educate ourselves. There are also relatively inexpensive legal processes we can go through so that we can be our loved one's voice when we have to take them to the doctor or emergency department.
I cannot tell you how many times we have been to an emergency department because the quick whiff of a skunk sent her to an instant level 10 and we had to find the nearest emergency department while on vacation. And then, when you get them there and you tell them you cannot treat her as a stroke or traditional migraine patient, you get that "look". Then you are locked out when she is taken back into the engine of the ER and you do not have a way of educating these well-meaning medical pros on what hemiplegic migraine is and what needs to be done for her.
Yet I digress, I state all of the above to say that "WE" have hemiplegic migraine. I handle the logistics and she is "along for the ride" as she puts it. It does break her heart for through the years she has learned a little about what I have to do for her. For her, it's understanding that it's love that drives me to take care of her and if I have to fight for her health.
My hope and prayer
So, for you, helpmates and caregivers, I understand your dedication, your sadness, your anger, your need to take care of yourselves, and your love. It is my prayer that anyone that has this debilitating disease called migraine has a helpmate to journey through life with.
Have others downplayed your migraine pain?