So Julianne Moore won an Oscar last year for her role in Still Alice, playing a woman with early-onset Alzheimer’s. Good for her. I read the book, but I won’t see the movie. First, I hate tearjerkers. Second, my wife Mary is five years younger than Moore, her dementia is much further along, and our lives are not very much like a fucking movie.
I’m Mary’s primary caregiver. You might not think you’ll ever be in my position, but you never know—5 million people in the U.S. have Alzheimer’s disease, mostly older people, but a few younger. My wife and I are both in our early forties; this is my story. Sure, Google will find you dozens of other tales of couples in their twilight years facing this diagnosis with grace and courage, and they’ll restore your faith in marriage. But what those lovely people won’t say—maybe it’s a generational thing—is that dementia destroys a person and fucks up the lives of everyone who loves that person.
Early-onset Alzheimer’s disease is a worst-case scenario for a marriage. On an average day, I bathe Mary, brush her teeth, change her diaper, and help her walk and eat and get through the day. Not because she’s physically incapable, but because she’s forgotten how to do these things on her own. I sometimes ask Mary to say my name, so that I can judge her mental state. Maybe a third of the time, she gets it right. It might be a good day. The rest of the time, she takes a minute to answer—the seconds ticking by—if she answers at all. “James,” she might say, or “Rachel,” or “One-forty-nine.”
Then there’s the irrational stuff. A few years ago, before I got a handle on all this, Mary and I were watching a B-movie in our living room (Mimic, if you care), sitting on the couch munching cheese and cold cuts and crackers and such. Halfway through an intense underground scene, Mary reached out to the coffee table, picked up a knife from the platter, and said, “We need blood,” and I had to grab the knife out of her hand just before she tried to stab her leg. I was shaking for a long time afterward.
That’s a tiny slice of my life, but let’s talk about the bigger picture. Here’s what it’s like to survive as a guy taking care of his wife in this situation.
You’ll need to become a mind reader. Before Mary’s condition worsened, she and I were eating dinner one night, and she stopped and looked around the table. I passed her the salt. She asked, with honest surprise, “How did you know what I was thinking?” For basic stuff, it’s not that hard, and it’s important. Helping someone with Alzheimer’s to not be scared, to not be anxious, to have their needs met even if they don’t know what those needs are ... you can figure it out. All it takes is attention and patience and time.
You won’t have enough time. And you won’t have enough money. These are the two big practical issues, and they’re hard to separate. People with Alzheimer’s typically need a lot of supervision. They tend to wander. They’ll just walk out the door, maybe trying to get home (even if they’re already home), and of course they’ll get lost. Even wandering in the house, they might find the kitchen (knives, the stove, the fridge) or the bathroom (lots of hard surfaces, plus a medicine cabinet) and start doing whatever. You might think you’ll get a break at night, but people with Alzheimer’s often have irregular sleeping habits, which means you’re never really off the clock. You need to find help, because the two of you can’t live like insomniac shut-ins—you have to hold down a job, too.
So you find help. Family members might take your place for short spells. (Siblings and parents are essential; possibly, your kids are old enough to help.) There are senior citizen daycare centers, which are like preschool daycare, minus the cuteness. You can hire a professional caregiver to come to your home; any metropolitan area will have a good number of companies to choose from. You end up scheduling out the days as if you’re a cruise ship entertainment director. Okay, that’s doable.
But it’s expensive. Maybe you were getting by before, financially. Great. But a caregiver costs on the order of $20 an hour, with a three- or four-hour minimum per visit. There are doctors and hospitals (people with Alzheimer’s tend to be accident-prone), physical and maybe cognitive therapists, anti-dementia medications and medical supplies to pay for.
You’ll need to apply for Social Security Disability, which automatically qualifies a person for Medicare. That will give you medical discounts and send a little money your way, though it may take a couple of years to go through, and you’ll probably need a lawyer to push your case through all the red tape. Social-services organizations, public and private, can help by sending people to visit; in some states, they’ll even handle transportation to a daycare center. And if you weren’t getting by financially before, you should apply for Medicaid. You’ll become disillusioned with the U.S. health system, which will either convince you to support the single-payer option or turn you into a bitter Republican.
You’ll have to take care of yourself. Make sure you have your own oxygen mask on. You’ve searched out time and financial resources, and some of that needs to be for you, so you can do things you enjoy and stay healthy. I lost 10 or 15 pounds the first year I was taking care of Mary, because I wasn’t eating enough. I was a fucking skeleton. I ended up with pulled muscles and a constant backache, and when Mary would sometimes stumble and fall, I couldn’t easily pick her up. So now I plan out better meals and spend time at the gym. This turns out to be good for my mental health, too. I even I go out with friends once in a while, overcoming the guilt of spending $20 an hour for the privilege.
You’ll face a special, unique kind of isolation. All this might sounds a little like a parent raising a child with a serious illness, and it is. But married parents have each other, and even single parents can get involved with someone else. This is tougher.
A few years ago, Mary and I tried to have sex. We both started out willing, but it was awkward, and it didn’t go anywhere. That was our last attempt. It’s not just that Mary’s like a child in some ways—it’s that, in a legal and moral sense, she’s unable to give consent to serious matters, because she doesn’t understand them. I was trying to explain this situation to my therapist (right, I had to see a therapist), and she said, “Did it start to feel like date rape?” Um ... I guess. Yeah.
There are no good, socially acceptable answers here. Remember when Pat Robertson advised a caregiver to divorce his wife rather than have an affair, because “she’s gone,” and the disease is a “kind of death”? A lot of people dumped on him for that, right and left, religious or not. Actual caregivers, though, tend to be much less critical about Robertson’s advice. They might say, “Here’s what I do, but I won’t judge if someone else does things differently. People don’t understand what it’s like.”
And if you ever come across the argument that there’s no Alzheimer’s exception in your marriage vows? Those vows say that no one will ever get divorced, for any reason. Take that into account. You’re already living with guilt (see my Mimic fuckup), and sometimes there are no perfect solutions. You’ll need to make your own choices, consistent with your internal sense of right and wrong, and with any religious beliefs you may have.
Sometimes I ask myself, “What would the old Mary have wanted for me?” She would have wanted me to be good to her, and—we did talk hypothetically about getting divorced or one of us dying, even though we didn’t have time to talk about Alzheimer’s—I know that she wouldn’t have wanted me to be desperately unhappy for years after she was gone. And yes, caregivers do talk that way about their loved ones with Alzheimer’s, with no slippery-slope bullshit about everyone changing over time. You’re married to a different person now, someone you love, but you can’t help grieving for the person who used to be there, that other person who’s never coming back.
You’ll become more philosophical. I won’t say this is a plus, but at least it’s not a terrible thing. You’ll think about the nature of being a person, the ethics of love and duty, what kinds of goals it makes sense for a person to have in life. All the things you used to spend time on will pass through a new filter, “How much do I really care about this?” With me, our lawn looks like shit, and that project in the garage will never be finished now. The dog? She needs time, too, but she’s a better companion than some family members. Everything that’s less important will fade away, and that’s fine.
That’s about it. Once in a while a friend or even a stranger might call you a saint or a hero, and they mean it. But you know that’s bullshit. You’re shooting for “adequate.” If you make it, that’ll be enough.