Being a Real Man

About three years after my wife Elaine was diagnosed with Alzheimer’s, one of the nurses at the neurologist’s office asked me whether I’d joined any support groups. Who, me? I’m from that generation of men who weren’t supposed to even have feelings, much less show them in public. Does the name Edmund Muskie ring a bell? He was a fine US senator from Maine, a leading candidate for the Democratic presidential nomination in 1972. But his bid fell apart on a snowy New Hampshire morning when he denounced a publication that, among other slander, was critical of his wife. Some reports asserted that Muskie cried as he defended his wife, while Muskie himself claimed the falling snowflakes were responsible for the moisture on his face. Either way, opponents used the incident to claim Muskie was too emotional to run the country. He withdrew from the race not long after.

As for me, I wasn’t man enough to know I needed help to deal with my wife’s health problem. My feeling was I didn’t need a pity party. The problem with that attitude was that I didn’t know what Alzheimer’s support groups were all about. I wrongly thought I’d be sitting in a circle of weepy people trying to one-up one another’s stories about their loved ones’ behaviors.

I was doing fine (I thought). I’d be okay (I thought). But as we’ve all learned from Proverbs 16:18, pride goeth before the fall.

Though what follows can also apply to wives taking care of their husbands, the shift in roles is often more challenging for men who become caregivers—so I will speak very bluntly to you husbands. You and your wife have always been a team, building each other’s careers and sharing in the work of raising a family. Now, the balance will shift little by little until you’ll be taking care of her a lot more than she takes care of you. You’ll do all the driving. You’ll go to all her doctor appointments and manage her medications. You’ll take over the housework, shopping, and cooking. You’ll choose her clothing and help her get dressed. You’ll help her safely take a shower and, eventually, even help her use the toilet.

You’ll do all that—and much more—with a broken heart. I know that your instinct is to try carrying this weight alone. Being a “real man” means being brave, suffering in silence, and standing on your own two feet, right? You’re not supposed to depend on others, are you? There’s a lot of truth in the old stereotype that male drivers don’t like to stop and ask for directions. But to be a good caregiver, asking for help is exactly what you have to do. That’s how you show how strong you are.

We’re a nation of doers. We aim high, and we despise failure. We keep score on the sports field and in the political arena. We look at a problem—such as that drippy bathroom faucet—and we figure it out. Alzheimer’s can’t be fixed, not yet anyway. But take heart: help is available so you can meet the challenge of life as a caregiver.

Before Alzheimer’s, I’d spent a lifetime in politics and business delegating responsibility to my staff and employees. Somehow, dealing with this disease was different. For many months, I wasn’t very public about Elaine’s diagnosis and how I was being impacted. I guess I didn’t want to unload on people beyond the circle of our closest friends. Stubborn, stupid Marty!

There’s no shame in your spouse having Alzheimer’s, and there’s no shame in your asking for help. And if I had spent time in a support group sooner, I’d have known that sooner.

One thing that makes it hard to ask friends for help is that Alzheimer’s makes most people uncomfortable. Few people understand what it’s about; all they know is it’s not good. In fairness to my friends, they, too, are grieving the loss of the First Elaine. For the longest time, I was satisfied just to have a friend ask, “What can I do?” The offer itself was comforting. You might even say it’s like having a million dollars in the bank. But that million-dollar account doesn’t mean anything if you don’t spend fifty bucks now and then.

It seems obvious, but every hour not spent on errands or chores is time you have for other things—whether it’s something your spouse needs or taking better care of yourself. What’s on your to-do list? Could someone else buy a few groceries this week? Drop off dry-cleaning? Return library books? Walk the dog? Run your car through the car wash? Or bring you a tuna casserole?

With a better comprehension of how Alzheimer’s was affecting Elaine, I would have known what kind of help to ask for. For example, when Elaine was in the early stages of the disease, I could have requested that a friend take her for a walk or out for coffee. She usually did better in one-on-one situations where lit- tle was expected of her. I enjoyed those times, and I bet her friends would have too.

And I could have had some respite time when our children visited from out of town. They certainly were willing to help. But I still considered their visits to be occasions to entertain them and take care of them as Elaine and I had done for the previous twenty years. What I really needed, however, was to rest. It wasn’t until I was beyond physically worn out that I finally allowed myself the luxury to sleep in or grab a nap while they were here to help with Elaine. I shouldn’t have pretended for so long that I was doing fine.

For the first four years—four long years—as I hiked the Alzheimer’s trail, I stuck to my crazy notion that I didn’t need anyone’s map or suggestions. I believed that as long as I loved Elaine (and I’d had a half century of practice at that already), I could handle the rest. Thank heaven I finally realized how wrong I had been. Look at what my attitude cost me—aggravation, good health, lost moments of joy with Elaine, and a friend or two along the way. Caregiver burnout and loneliness feed on each other. Be man enough to admit you need help. Then get it.