My Husband Will Probably Get Dementia. I’ll Probably Have Cancer.
I’m afraid my family history of cancer will catch up with me — and that dementia will come for my husband
My husband’s parents both have dementia and that terrifies me. Every time Kevin can’t think of a word, or I say something and he stares at me blankly like I’ve suddenly started speaking pig latin, or he can’t remember something I think he should, I get this sick feeling of panic.
We just moved to the small Pennsylvania town where he grew up. At least once a week, he points to the grounds of his old elementary school and says, “Did I tell you I helped plant that tree?” Or we cross a bridge near the middle school and he says, “That’s where I fell off my bike in the sixth grade.”
Every time he tells me a story he’s told me before. Every time he struggles to understand something that comes easy to me. Every time he blinks and shakes his head like he’s waking himself up and asks me to repeat myself.
Every time. I get this cold finger of fear up my spine.
Kevin doesn’t get scared the way that I do; I don’t know why. Honestly, sometimes his blasé attitude toward the whole thing scares me even more. Is it a sign that he’s already in the early stages of dementia, that he doesn’t even know to be terrified?
I suppose some of my panic comes from knowing that there is a solid chance I’ll finish caring for Kevin’s parents just in time to start caring for him. My father-in-law’s particular brand of dementia is caused by Alzheimer’s disease, and his decline has been swift and heartbreaking.
George used to be gregarious. He was fiercely independent, the kind of man who exuded self-confidence. This week, my husband had to start shaving his face for him. He can get the shaving cream on okay, but he’s forgotten how to work a razor.
It seems like every week, some part of their care shifts from themselves to us.
This isn’t the future I want for Kevin and myself.
It’s not that I’m afraid of growing older. Middle age is actually rather nice. I’m 47 now. Kevin’s 50. We finally have enough money. Two-thirds of our kids are grown up; the youngest is a teenager on her way to independence.
My forties have been objectively better than my thirties, which were so much better than my twenties, I can’t even tell you. Plus, my mother died when she was my age, so I’ve never thought of forties or even fifties as old. Forty-eight might be solidly middle-aged, but it is undeniably young to die.
I’m actually looking forward to my fifties — I just want to be healthy, and have a healthy husband, when I get there.
My husband isn’t the only one who has to check some scary boxes in the health history section of a medical form. If Kevin’s genetic legacy is dementia, then mine is cancer. All of my grandparents died of cancer. So did my mother. My father is a cancer survivor, twice over. Every one of my aunts and uncles and cousins who are dead, died of cancer.
While dementia is what keeps me up at night, afraid for my husband, cancer is the thing I’m pretty sure will come for me someday. As my siblings and I approach middle age, I have this low-key, constant fear that the heartbreaking phone calls will start to come.
Still, cancer feels different, more manageable somehow. There are self-checks and mammograms and pap smears and dermatologist checkups that reduce my risk. Advances in health care have made it so that I’m more likely to survive cancer than my mother or grandmothers were.
Cancer can also be cut out. It can be blasted with chemotherapy or radiation. The BRCA test I took last year revealed that I don’t have the genetic mutation that would put me at an even higher risk of breast cancer than my family history already does. And even if I did have it, I could have had my breast and other tissue preemptively removed from my body. I would not have hesitated.
At least cancer is fast. My mother was perfectly healthy until she wasn’t.
Dementia, however, cannot be carved away from my husband’s brain if it comes for him. Even if some medication becomes available to halt the progression of Alzheimer’s, by the time it’s obvious he needs it, his brain will be irreversibly damaged.
And at least cancer is fast. My mother was perfectly healthy until she wasn’t. Then she was sick for one year before she died. One year. Kevin’s parents have been in the clutches of dementia for at least a decade, and the fist keeps closing tighter and tighter. They might live another 20 years — but already they can’t drive, be alone, cook their own food, dispense their own medications, or manage their own money.
It’s exhausting. And it’s progressive. When we moved to Pennsylvania, my husband applied for jobs. He was offered one, but we realized almost immediately that it would be impossible for him to take it. Only one of us can work, if his parents are going to live with us. They need constant, unrelenting care.
The time when we won’t be able to offer it anymore is looming. Just recently, George has started to wander out of our yard. So far, he just goes to the sidewalk, but now he can’t be left alone for any amount of time at all. His dementia has left him unable to be scared or angry about the possibility of a nursing home. Carole understands what’s happening to her and to her husband, though, and she’s become angry and paranoid. She is sure I want to “put her away,” and no amount of reassurance that we’re not trying to get rid of them seems to help.
Not only does dementia run in my husband’s family, but his father had a heart attack when he was a few years older than Kevin is now. He was the first man in his family to survive past his fifties. George also has Type 2 diabetes. He and Kevin’s mother both have chronically high blood pressure and heart disease.
So Kevin not only has the specter of both parents suffering from dementia, but also the trifecta of so-called lifestyle diseases: heart disease, high blood pressure, and diabetes.
Turning 50 has given him a little kick in the pants. He’s working on exercising, eating better. He lost more than 30 pounds this spring. He’s doing things that are good for his heart, and we’re crossing our fingers that what’s good for his heart will be good for his brain as well.
We’re trying to avoid living in hindsight, trying to avoid a future that involves our daughter’s spare bedroom and handfuls of pills for lifestyle diseases. If my in-laws had made different choices at 50, would they be living in our house in their seventies, becoming increasingly childlike as their disease progresses? What if they hadn’t both smoked two packs of cigarettes a day for decades?
We’re trying to avoid a future that involves our daughter’s spare bedroom and handfuls of pills.
They also don’t exercise (at least not on purpose), and they don’t eat vegetables. I’m not being hyperbolic; left to their own devices, they would only eat highly processed foods. In other words, they’re pretty much a case study in what can happen if you don’t take care of yourself.
I do not want to be like them when I’m old, and I don’t want that for Kevin either. When I’m in my seventies, I want a vibrant, full life. I want to travel and eat good food and live a wild, adventurous old age. And I want to do those things with my husband.
There is no guarantee that anything we do now will protect us from dementia or cancer. But we can at least make changes that give us the best shot at ending up with the kind of old age we want.
For example, this year, Kevin stopped working as a craps dealer. It’s a big deal to him, to give up the career he’s had his entire adult life, but doing so has reduced his secondhand smoke exposure to pretty much none.
Kevin has never been a smoker himself, but he’s been heavily exposed to secondhand smoke all of his life. His mother smoked throughout her pregnancy with him. Both of his parents smoked at home when he was growing up. And when he was 21, he started working in casinos, also filled with secondhand smoke.
In addition to Kevin leaving the smoke-filled casinos behind, we’re adopting a Mediterranean diet — lots of fresh food, less meat, more fish, good fats and carbs. We’re upping our exercise. While Kevin’s job-related risk factor was cigarette smoke, mine is being sedentary. I’m a writer who spends most of every day sitting on my ass.
We’re hoping that making these changes now will give us some grace if dementia does catch up with us. That instead of the first signs happening at 60, they’ll happen at 80. That the decline will be at least be slower than it has been for Kevin’s parents.
As I care for my in-laws, I’m reminded every day of what our future could look like if we don’t make an effort now. My father-in-law likes to sit in the kitchen while I make dinner. Sometimes I’ll tell Alexa to play Patsy Cline, and suddenly George is there again. He sings. He tells me stories about his childhood — the chickens he had in his front yard or how the best food he’s ever eaten was in the mess hall when he was a Marine.
And, for a fleeting moment, I’m reminded of the person he was before dementia set in.