• Men are the future of care

    According to the AARP 2025 report on caregiving, of the 11 to 15 million people serving as full-time primary caregivers to their loved ones with disability or dementia, 39% are men.

    We can discuss whether that number should be higher, but my point is 39% of 11 million people is a lot of guys. It’s really hard to generalize the attitudes and behaviors of a cohort that large.

    And yet, we do it anyway. We say that men only want to “fix things.” That they lack empathy or patience with problems that come with cognitive loss. That caregiving is “women’s work.” I know a hundred male caregivers (and even more female caregivers) who prove those assumptions dead wrong.

    Most literature on caregiving is written by women. The advisory board for that AARP study was almost all women. If the community around caregiving is predominantly female, and if the wider culture still thinks of caregiving as a thing that women do and men don’t do, then of course lots of men are going to feel left out.

    We know from the research that men are less likely to join support groups and less likely to seek help when they’re having problems caregiving for a loved one. None of this helps their loved ones at all.

    Men are only 39% of the caregiving army but their ranks are growing. They, as much as women, are the future of caregiving. We should stop thinking otherwise.

  • The Tom Brady rule

    By the end of his career, Tom Brady said he knew opposing defenses “better than they knew themselves.” He had spent so much time looking at defensive schemes in the film room and behind center that there was literally nothing the opposing team could show him that he hadn’t already seen. (As a Chiefs fan, it’s painful to admit that Brady was specifically referring to the Kansas City defenders he outsmarted en route to winning his last Super Bowl.)

    The problem, Brady saw, was that this realization came at the end of a 20-year playing career. His mind was ready for anything. His body wasn’t. The Tom Brady rule is, just when you achieve mastery over something, it’s time to move on.

    And that will be true of us as caregivers. At the start we look unpromising. We mess up. We learn to do better. We learn to let go. We define goals for success, even in our stressful situation. We desire peaceful, pain-free days for our loved one. And we get them. We even add in a little pleasure. We adapt to our new normal. We get better.

    And then, just about the time we feel some mastery over the situation, the journey is over. But the lessons we have learned and the skills we have acquired will serve us well in whatever we choose to do going forward. Tom Brady took less than two years to become the best football color guy on TV. I’m doing The Manly Caregiver.

    What next chapter of adventure or service or love will you write?

  • Love covers a multitude of sins

    You are going to mess up in a thousand ways. You are going to lose your patience and say things you wish you hadn’t. They will be forgotten.

    In time, you will learn to practice love in ways you hadn’t thought possible. For me, caring for Diane pushed me to be gentler, less argumentative and more gracious than I’d been to her in the 25 years before her diagnosis. I regret not being a better husband earlier. But that regret inspired me to give her my best as a caregiver, as did this Bible verse:

    “Above all, love each other deeply, because love covers over a multitude of sins” (1 Peter 4:8).

  • The successful caregiver

    During the rocky first weeks after my loved one’s diagnosis, I got a lot of information and had a lot of talks. It was all very clinical and practical. What meds should she be taking? What’s the prognosis for the disease? Do we have our affairs in order?

    I wish someone had taken me aside, though, and said: Aaron, you’re a caregiver now, whether you like it or not. Now, what would it take to make sure your work was successful?

    The word would’ve taken me by surprise. Success? How can I be a success when there is no cure for my loved one. I can’t nurse her back to health, so doesn’t this journey end in failure?

    Surprisingly, as I found over time, I found that I could indeed be a successful caregiver. But I had to define my goal differently than I did when caring for Diane’s breast cancer, or when Diane was caring for me during my worst days with leukemia.

    Give a man a goal, he’s going to find a way. And here was the way for me. I think it will work with other caregivers, too.

    A successful caregiver makes the life of their loved one as peaceful, painless, and pleasurable as they can.

    Successful caregiving was not about the future, it was about the here and now — a moment, a day, a season.

    Success in caregiving is setting a goal that puts our loved one first. It means setting a standard for care that is high yet achievable. And then later on, when our journey is over, and we are looking back through our tears, we see and understand that we did right by our loved one.

  • ‘No more smiling’

    Before Everybody Loves Raymond aired its final episode, the press coverage was so funereal that the show’s creator declared mockingly, “There will be no more laughter! No more smiling.”

    It can feel that way for a caregiver.

    Being around our loved ones 24/7, we see that funny is not just in the eye of the beholder, but their brain as well. A small child will laugh at two clowns running into each other but stare blankly at this confounding industrial video, which has 7.1 million views and hundreds of witty comments from people trying to outdo each other for irony and absurdity.

    As dementia progresses, the cognitive powers that tell adults “what’s funny” are wiped. Every caregiver I know has grappled with finding something enjoyable to do with someone whose taste in entertainment is that of a fussy child. I gave up trying to find things to watch on TV because loud, disembodied voices bothered Diane.

    But I could always take her to church. Our unpretentious sanctuary is in an old auto shop building, and kids are welcome to tear around before and after the service. I found that nothing delighted my wife more than watching this pandemonium. Her smile in these moments reminded me, more than anything else, of the woman that I remembered before the diagnosis.

    I made sure she could experience that, and I could see her smiling like that, until the very end.

  • It’s not denial

    I knew when to stop talking about dementia with Diane. It was when she denied having it.

    In medicine the word “deny” is said without judgment. A report from a recent doctor’s visit includes this sentence: “Pt denies pain, fever, chills, runny nose, cough, depression/anxiety, headaches, vision changes, chest pain, dizziness, SOB,” and on and on. I was experiencing no symptoms because I was there for a routine checkup. But if I was sick the language would be vital to getting at a diagnosis.

    With the dementia patient, though, we know the diagnosis and we know how it ends. The fact that you and the patient used to talk endlessly about your health and what foods to eat and what to put in your smoothie doesn’t matter any more. What matters is that their days are peaceful and pleasant.

    By the time Diane started denying her diagnosis, someone in my support group had introduced me to anosognosia, a condition that the Mayo Clinic defines as “the inability, in a neurologic sense, to be aware of impairment.” It worked for me.

  • Slowly and subtly

    A caregiver video assures us that “dementia progresses slowly and subtly over time.” You could also say that of an active volcano that’s creeping toward your house. We actually did move to a new house in a different state, but soon the volcano was coming from inside the house.

    Slowly, subtly, my loved one was turning into a person radically different than the person I knew a short time ago. This person was not just forgetful but often confused and highly emotional. Their personality seemed a 180-degree turn from the person I married.

    Caregiver support groups know the rhyme: Pauline Boss, Ambiguous Loss. It’s true, my feelings were conflicted as I bade a slow farewell to that person I had loved so well for so long. But as a practical matter, I had to get to know this new wife in my house.

    One reason men should join an all-guys support group is that everyone in the room is learning this same practice. Slowly and subtly, these men find ways to love their loved ones all over again.

  • How to lose arguments

    Like all couples, we had our squabbles. We tried to fight fairly and make up lovingly. I was the hothead, she was the restrained one. I got a lot of feedback about the tone of my voice. I tried to do better. Didn’t always succeed.

    Now here she was, unshackled by dementia, paying me back with interest. She would have a meltdown over the most innocuous things, like tooth-brushing. Or I would tell her one of our inside jokes — the kind that exactly two people in the world find hilarious, and tell each other for years — only to find that she no longer thinks it’s funny at all.

    In situations like this, the only way to restore order and bring peace back to our household was for me to apologize profusely and try to make it up to her.

    Looking back now, I wish I’d learned to lose arguments much earlier. Diane’s condition forced me to practice empathy, and helped make me a better human.

  • Instinct is overrated

    “For a human being, nothing comes naturally,” declares a shaman in His Dark Materials. “We have to learn everything we do.”

    We grow up understanding that women are naturals at giving care. It’s their “instinct.” There’s no doubt we do some things instinctively, but mostly we learn by trial and lots of error.

    When I was 25 I moved into a large household with folks who were just grateful I made dinner for them. I made a huge mess, experienced some smells I wasn’t used to, and eventually got it done. People love my cooking now. Am I an “instinctive” cook?

    I had an aide who laughed as she cleaned up Diane after an accident. I asked her to show me everything. My first few times doing it reminded me of how I learned to cook. But I got it done and soon got better at it.

    You’ll be surprised what you can do when you show up and roll with the changes.

  • Help isn’t on the way

    If you’re used to solving problems yourself, caregiving is going to be a huge shift. Your loved one’s disease is incurable. Friends and relatives disappear. And there’s no cavalry to call for help.

    The temptation is to go it alone. But surveys show that caregivers who go it alone suffer physical declines greater than those who ask for help from others. I have heard more than once the advice to put on the oxygen mask first before masking your loved one. It’s solid advice.

    If you don’t cook, you can set up a MealTrain. If you need to run errands, you can ask friends to sit with your loved one. Long-term, though, you will need to enlist partners who will come reliably on schedule and give you a break. Many cities offer adult day care programs; ours picked up Diane in a bus with SHALOM in big letters on the front.

    But why figure this all out yourself? Support groups are everywhere. I joined one three weeks after her diagnosis. I was the only guy on the Zoom call. Listening to these ladies tell their stories was immensely helpful. I could ask questions that only another caregiver could answer. This is help that no doctor or Internet source can offer. Programs like Lewy Buddy will even match you with someone who’s been through what you’re going through.

    The cavalry isn’t coming, but there’s a whole invisible army of care out there, and they look out for each other.