The Simple Way to Help Family Caregivers

When people ask me, “How are you doing?,” it’s often a two-part question. The second part comes when, off to the side, they ask my wife, “How is he doing, really?”

I’ve been living with primary-progressive multiple sclerosis for a long time, decades. Over the years, its effects become more and more visible. A limp led to a cane led to a walker led to a scooter led to a wheelchair. Now I need quite a lot of help with my activities of daily living, i.e., getting up, washing, dressing, and everything-elsing too. I guess people think I put on a brave public face or something. So they take my wife aside, these people who are concerned for me, and in hushed tones they ask her for a second opinion.

I am grateful for those who care enough to ask, and re-ask, about me. I don’t take them for granted. But they are asking the wrong question, an incomplete question. The right question is, “How are you doing?,” as in, “How are you BOTH doing?”

Because it’s a package deal. It is a couple that gets MS, it is a family that gets MS.

It’s natural and empathetic to be concerned for someone chronically and visibly ill: It is showing support. But a fantastic, and I would say, essential way to show support, is to also ask about the well-spouse who is taking care of them both. You can’t be solicitous for the one person dealing with illness, while looking past the other who is dealing with the same and is standing right in front of you! That family caregiver must not be forgotten. That family caregiver who is not visibly affected by chronic illness, but feels its effects. That family caregiver who is chronically over-fatigued and under-slept. The family caregiver whose memory is shot, with so many items hopping onto their mental bookshelves that other items are continually falling off the other side. The family caregiver who is so overwhelmed that they cannot turn their brains off to fall asleep at night. The family caregiver who is prone to anxiety and depression for all the things they have yet to do.

This is National Family Caregiving Month, a time to recognize the millions of diligent, unsung people beside those who are chronically ill. In the U.S., one in every five adults – 53 million – provide unpaid care for adult family members, according to AARP in 2020. More than a quarter of them have difficulty coordinating care, and three in five of them also work outside the home. Almost a quarter say their health is worse because of it. More than half are over 50, but family caregivers include Boomers, Gen-X, Gen-Z, Millennials and the Silent Generation. Three in five are women, who were also the hardest hit in the pandemic due to erratic school closures. A quarter care for more than one adult. And with an aging population, these numbers will only grow. We need to ask these hard-working caregivers, How are you doing? – for all of our sakes.

On the occasion I’m asked what would help me the most, I can say that truthfully you can help me by helping my wife, my caregiver. When I’m out there on the trails or spinning about town, it’s me out there doing that stuff, but she has a hand in getting me on my horse, or my wheelchair as the case may be. What I do are my own accomplishments, but in every case she’s my enabler.

So, how can you help her or another caregiver? My suggestions:

1. Ask how they are doing.

They are not invisible, they are not a medium or spokesperson for somebody else.

2. Ask what they need.

Then the hard part: truly listen. Don’t let your monkey-mind complete the caregivers’ thoughts for them. What you think would be generous and helpful might actually be getting in the way. You may be surprised by what you hear, and how it differs from what you were going to suggest.

3. Offer to make yourself available.

Understand, a caregiver often craves downtime. Downtime to relax, to nap, or even to attend to errands or shopping without worries. Offering to spend time with the chronically ill person can grant valuable free time to the well-spouse. Or, performing a needed house project. Or, delivering a cooked meal. These are all very thoughtful, helpful ideas –

But they are not the caregiver’s or well-spouse’s ideas!

Real help begins with a question, and the thought that lies behind that question. How are you doing?

Here’s an excellent resource for family caregivers, put together by our staff at The Mighty. Lots of info and links, but also questionnaires and worksheets to help understand and really think through what are complicated and emotional situations. Save it to pass along to those who may need it throughout your life, because eventually we’re all going to need care or know someone who does.