This Thanksgiving, Be Thankful for Caregivers

November is not just the month we roast a turkey, mash some potatoes, and cook up a pumpkin pie to celebrate Thanksgiving. It’s also National Family Caregivers Month. Before I had a disability, I don’t think I’d ever considered the word “caregiver.” And once I was diagnosed with type 1 diabetes and then epilepsy, I suppose I was pretty selfish, caught up in thinking about how these disabilities changed just my life. How my life was so much was more challenging now, and how I had to live differently than I once did. It’s very easy to get stuck in an “It’s all about me” place.”

But let’s stop and look at disabilty from another perspective. Let’s consider how one’s disability changes the lives of the people who love us – our parents, our partners, our children, and our friends. Following is an interview with my “caregiver” and spouse of 34 years this month, Doug.

Where and how did you and Sue meet?

We met in college. I picked her out of the Freshman Facebook (that’s the actual paper Facebook that was distributed to all incoming freshman at Northwestern, not the digital one), and after pursuing her for a while, she agreed to date me.

What first attracted you to Sue?

Her beautiful face, smile, and hair. Her vibrant personality. Her wit and intelligence. And her sassy personality.

What sorts of things did you like to do together?

At first we took a lot of courses together because we had the same major. We also ran in similar social circles, so that worked well. In school, college activities are pretty much your life, and we did most of them together, from studying to Friday night keg parties, to fraternity formals.

But we’re really quite different. I’m very outgoing, and Sue’s pretty introverted. I like to push myself athletically, and while Sue enjoys things like biking and skiing, she’s a sunshine and blue-sky kind of athlete. She takes these kinds of activities at a more moderate pace than I do.

What was it like when Sue was diagnosed with diabetes? Did your life together change?

We were already married for several years before Sue was diagnosed. In the months before she was diagnosed with diabetes, Sue lost lot of weight and we didn’t know why. So, when we finally got her diagnosis of type 1 diabetes, it was somewhat of a relief and not really a surprise because her dad had it. And now we could make a plan. At first, Sue was dealing with syringes in addition to counting carbs to figure out how much insulin, and honestly I didn’t really understand that very well.

Today’s tech is so much better. Between the insulin pump and the continuous glucose monitor she wears (and that I can follow her numbers on with my phone), she’s almost constantly getting the right doses of insulin and almost always knows her glucose number in case she needs to make any adjustments. I still worry when her blood glucose numbers get too high or low. If I’m home I’ll bring her juice when her number is too low, and when I’m out of town I call her to make sure she’s taking care of it. I know this drives her nuts, but I’m not going to stop.

The other thing that makes her crazy is travelling with diabetes. She has to be so prepared if anything malfunctions, she has to have back-ups and back-ups to the back-ups. I pester her about this, too, and she hates that.

I know Sue gets very frustrated with her diabetes. She often yells at her phone for “yelling” at her when it beeps with low or high alerts. But despite everything, I’m very proud of how Sue’s handled diabetes from the start. It is not an easy thing to stay on top of.

What about her epilepsy?

Relative to diabetes, I found the epilepsy much scarier. And as I learned more about it, I became even more scared. So much of what I fell in love with Sue had to do with her brain – her intelligence, her sense of humor, her wit – and the fact that epilepsy affects the brain terrified me. I’ve been with her for most of her seizures, and I’ve been diligent in tracking them. I do my best to go to all of her doctor appointments, and I keep track of her meds.

During the first year after her diagnosis, she must have gone through six or seven meds in different combinations before we landed on the pair in the dosage that seemed to keep her seizures somewhat under control. And even then, she was still having absence seizures every six weeks or so. After a lot of head butting, we got some of those plastic day-of-the-week pill containers, and I took over filling them with all of Sue’s different meds. This made it easy for her to become really vigilant about taking her meds every day exactly as prescribed, and her seizures stopped (October 27, 2019 was her last one). Though her EEGs still read epilepsy like waves, we’re very grateful for her seizure control.

What role do you play in her care?

In general, I’d say medication management, emergency intervention, and emotional support. I also try to accompany her to doctor’s appointments.

Can you give some examples?

Sue manages all her diabetes medication and equipment, but I take care of everything else. I order all her other medications, make sure she doesn’t run out, and fill up her plastic pill containers for the week. This isn’t as easy as it sounds because 1.) the meds come from different places, and 2.) because of insurance, drug companies won’t refill them until there’s only a few left. So, timing can be an issue. I also make sure there’s always orange juice and gummy bears in the house. These are Sue’s two “go to” sources for quick carbs if she gets low. There have been plenty of times when I’ve brought her juice late at night.

Have there been any scary moments for you?

Sure. First off, it’s terrifying watching someone you love experience a seizure. Even though Sue’s been seizure-free for four years now, her EEGs still show epileptic activity in her brain. So realistically, she could have a seizure any time. And she’s never had an aura, so she’s never had any warning as to when a seizure was coming. Also, Sue is very insensitive to her low blood sugars. They have to get into the low-40s before she starts to feel them. And then it hits her like a truck. I travel a lot for work, so she’s home alone a lot. There’s an app that lets me see her blood sugar numbers in real time, and I admit I call her to make sure she’s getting herself some juice when this happens. I know she doesn’t like that.

How do you think Sue feels about your “caregiver” role?

Honestly, I think she appreciates and hates it at the same time. On the one hand, she thinks she can manage it all herself, but on the other I know she relies on me more than she’d like to. She doesn’t like the idea of me “spying” on her via this app, but she also asks me to get juice for her when she’s low. So, it is what it is.

Do you think Sue’s disabilities and your caregiver role make you closer or create conflict and why?

Sure, it creates conflict sometimes. Sue’s an emotional individual. She feels things deeply. So, sometimes her conditions and my role as a caregiver really get to her. She wants to be completely independent, but that’s not always realistic or necessary. And she’s been there for me, too. I had viral meningitis early in our marriage, and I’ve recently recovered from a very nasty bicycle crash that took me out for a few months. I couldn’t have got through these without Sue’s caretaking. Nobody likes feeling weak or incapable, but a partnership teaches you that it’s okay to lean on your partner for some things.

Any final thoughts?

When we married 34 years ago, we swore to love each other “in sickness and in health,” and “for better and for worse.” Dealing with Sue’s epilepsy and diabetes is some of the “for worse,” and that’s okay. We’ve had and will continue to have plenty of the “for better.” That’s what makes a marriage.