My Change in Attitude Made All the Difference

As told to Open Caregiving and lightly edited to enhance readability while preserving the author’s voice.

Getting to know the caregiver

Hi, my name is Jane. I’m a woman from Missouri, part of the Baby Boomer generation. I am currently a caregiver for my husband, who has Multiple Sclerosis.

What did your life look like when you became a caregiver?

I am a 24/7 caregiver to my spouse. It’s been around the clock since 2012. Before that, it was intermittent; and before 2006, it wasn’t an issue at all.

Who did you care for and what prompted their need for care?

Caregiving has a lot in common with this current COVID-19 pandemic. Everyone just wants things to get back to “normal”. That isn’t ever going to happen, and never would anyway. Any ideal of a time in the past is just that, a mental snapshot, and subject to the bias of nostalgia, and — this is key — it includes a false assumption that the time of that snapshot was ever more than just a moment in time.

There never was a “normal”.

Caregiving is one of the roughest jobs I’ve ever done. I did it for love, not for money, and it was my choice. I entered into this knowingly. My husband has Multiple Sclerosis, and it’s been more than 30 years since he was diagnosed. Even so, thinking you know what you’re getting into, and actually being there, are two different worlds.

We’ve been through the gamut, from a single hand crutch and hand controls on a van, to someone who’s paralyzed, incontinent, requires a Hoyer lift for transfer from specialized air pressure mattress to power wheel chair. From a time when I could travel for three weeks at a time without worrying, to a time when I am nearly as house-bound as he is. The VA (Veterans Affairs) is paying for an in-home health aide 29 hours a week; the remaining 139 hours I am on-call and need to be available when needed.

What was a memorable learning?

There are a million things I can share. Here is a really big one, something that has changed my attitude, and my mental health, for the better.

It seemed as if every time I was working on something, my husband would call for help. I caught myself uttering frustrated curse words, putting down my project to go help him, in a sour mood about it. I didn’t like thinking I was that kind of person. So I decided I wasn’t going to BE that kind of person.

It was a slow process. First thing was to quit cursing. Muttering under the breath, or even thinking them, counts just as much as saying them out loud. That took some doing, and I may still occasionally slip up. Again, it’s a process, a habit you want to get out of.

My habit when interrupted was to get upset about the disruption to my routine. Step one was stop complaining about it. Okay, kind of tough, but eventually I got it under control.

Step two was a little different. Instead of being sour at an interruption, I would act like it was not a big deal at all. It was a “fake it until you make it” process, big time. But over time, with repetition, it again became my default habit. Get interrupted? Meh, okay.

What surprised you about caregiving?

Putting those two steps together changed my relationship for the better. Very much so. It helps me, because I am more tranquil, and in a better state of mind. Mishaps happen. Nothing is a constant. Nothing I am doing is so important I can’t step away from it to help someone else.

And then something magical happened. I quit resenting my husband for his interruptions, ceased to even look at them that way. If I was writing and in the middle of a paragraph, I’d say so, and if he needed the bedpan right now, he’d say so. We found a way to communicate without assumptions or misunderstandings.

If I could offer one other bit of advice, it’s to try to remember that a lot of times it’s the disease and not the person (e.g. too exhausted to help with the chores doesn’t mean not wanting to help with the chores). Realizing that makes you understand better what is and isn’t under your personal control. You can change how you perceive, how you respond, how you grow, from what you are going through.

How do you try to balance being a caregiver while caring for yourself?

Find creative outlets, whatever they are, and spend at least a bit of dedicated time each day to those outlets. Get regular exercise. It’s like eating. You can skip it now and again, but it really is a big part of a healthy life. Remember that your life is not their illness; nor is their illness their life.

What resource would you recommend to caregivers?

Take care of yourself. Get yourself a support group. Find an in-person one if you can, an online community otherwise. Have an outlet where you can speak to people who know the language, so to speak.

Also, my husband is a 100% permanently disabled Vietnam veteran, so we have access to resources through the VA that a lot of other people don’t get. Before he “progressed” to secondary progressive, the VA paid for his Avonex. They provide funds for an in-home care aide, and those funds include 15 hours per month of respite care for me. Besides all his prescriptions, they cover his durable medical equipment, including a specialized hospital bed, Hoyer lift, trapeze, and power wheelchair.

What advice would you give to caregivers?

You cannot change another person. You cannot change a disease or its course. Those sound like “so simple, duh” statements, but embracing them is huge. Say you’re caring for a diabetic who won’t quit stashing bags of candy bars in the bathroom towel closet, then binging like mad every time they go to the bathroom. You can explain, you can encourage them to talk with their doctor. But you can’t change them. Accepting that makes the situation a lot less stressful for you.

Is there anything else you’d like to share?

The first thing to go is any sense of dignity. Just go with it, learn to laugh, and develop a healthy sense of humor. It’ll take you far!