Dad gets upset when I leave.

Dear Grassflower: Dad’s been in dementia care for 6 years. He’s still able to talk—mostly, so I can tell how he feels. And lately, he’s been…clingy. When I tell him I have to leave, he makes up a reason to stay, or he insists he should go with me. We repeat this ritual every visit, and it often takes me an hour and a half before I can actually get out the door. By then, it’s late, I’m exhausted, and I feel like I don’t have time to unwind. I know Dad won’t be around much longer, which makes me feel horrible for telling him I have to go. I’m having trouble drawing the line between what’s good for Dad and what’s mentally healthy for me. Thoughts?

~Alyson, El Segundo, CA

Not enough stoicism in the world

My brother-in-law recalls the last time he visited his dad, Ed, a Navy veteran who had been dealing with idiopathic pulmonary fibrosis for the last few years of his life. Ed had been taken off most of the medications intended to improve his breathing, partly because they weren’t helping. He was already on 100% oxygen, constantly felt fatigued, and had trouble staying conscious long enough to enjoy a visit.

My brother-in-law and his wife had been there for a few days and were getting ready to leave. “I have to go, Dad,” he said. “I’ve got to get back to work.”

“You can stay a few more days,” Ed replied. Ed never questioned anyone’s schedule, seldom showed emotion, and he almost never revealed what he was worrying about, even though he worried constantly about his wife’s health. Something seemed off.

“I’ll see you again soon, Dad,” my brother-in-law replied.

“No, you won’t,” said Ed. He didn’t mean it judgmentally. It was just a fact. He knew he wouldn’t survive to see his son again, and the moment of realization had come upon him suddenly. While my brother-in-law struggled to say goodbye, Ed was struggling to remember his son’s face and treasure their last moments together.

My brother-in-law knew his dad had turned the last corner, knew what was coming, knew it wouldn’t be long, and was doing his best to accept his mortality as matter-of-factly as he could.

Dementia and mortality

You’ve probably noticed that even though your dad’s been in dementia care for half a dozen years and has for some time ceased to be the man he once was, he’s still capable of feeling things long after he’s ceased to comprehend them.

For your dad, the world has become a confusing, dark prison he can’t escape. He wants to return to somewhere safe and familiar, but all you can provide is “safe.” Despite his dementia, he may still “know” something’s not right. He associates you with warmth, kindness, security, and the simple pleasures he’s still able to enjoy—even if he doesn’t know who you are any more.

About four days before my mom died, I visited her in her dementia home. She had recently ceased to recognize familiar foods, had experienced a fall, and though she had long been a “talker”, now sat in a chair in her room for long stretches of time without saying anything. I had already known for a long time that telling Mama I was heading out wasn’t going to make her happy, so when I needed to leave, I had been in the habit of saying I was going to the grocery store or even the bathroom and would be right back. She’d usually forget where I had gone after a few minutes and sit in her room reading the same yellowed page of an old mystery novel over and over again. But not this time.

“Don’t go,” was all she said.

It hurt to leave that day.

She lost consciousness permanently a day or two later, and by the end of the week, she passed away quietly in her bed.

My point is this: that even though Dad’s “not all there” any more, his feelings are still as real as your own. Which makes it harder to say goodbye.

Saying goodbye, and saying goodbye

There are really two challenges here. One is how to let Dad know you’re going somewhere else for a bit, and the other is knowing when that’s not a good strategy.

If things are “normal” (and by that, I mean nothing different from the everyday craziness of dementia caregiving), it doesn’t really matter what you say. In fact, you can probably just wander out of the room and through the front door. Truly, he probably won’t remember you’re gone. It’s okay to draw boundaries anyway, so do what you must to preserve your sanity. Next time, bring cookies, a game, a jigsaw puzzle, or some old photographs. You’ll see him soon enough anyway.

But one day, as with my brother-in-law and his dad, you won’t. Chances are that one of you will know it, also. Something will have happened, or there’ll be a feeling in the air, but every cell in your body will be screaming at you to stay just a little longer.

If you can stay, do.

Dad’s moments are coming to a close, and this might be your last one together. If that’s the case—and I think your heart will tell you when it is—take the time to hug him a little longer, squeeze his hand, and tell him just how deeply you love and appreciate him. Remember how it feels, because it will soon be nothing but a memory. And if you must cry, cry tears of joy that you got to walk the earth together, if only for a short while.