FIL’s dementia has taken turn for the worse.

My father-in-law has been in a dementia and memory care residence for the last four years. When we admitted him, he was fairly lucid, able to feed and dress himself, but otherwise confused and lost when it came to everyday stuff like paying bills on time, remembering to eat, etc. He had already had a few episodes where he got lost, got into accidents, and we had to take his car keys away. Thankfully, he was reasonably self-aware of his mistakes and glad to have the help driving him to doctor’s appointments, to visit friends, and so on.

More recently, he’s forgotten or gotten confused about who his children are (he thinks I’m one of them), asks when his (deceased) wife is coming to visit, doesn’t recognize what breakfast cereal is (he calls it “cold white soup”), and generally gets irritated at the slightest, most nonsensical things. The other day, he left a Diet Coke on his bedside table, and no more than 30 minutes later, wanted to know who had been in his room and why they had put it there. Now he’s not sleeping, seeing people who aren’t there, and tries to fight the residence staff when they escort him back to his room.

He’s only 68. I feel like his life has been cut way short and I am watching it unravel in real time. I thought he’d be some sort of “normal” for longer than this, and now I’m both wondering how much longer he’ll have and feeling horrible for hoping it will all be over soon.

A story with no good endings

First of all, please accept my sympathy for your situation. Dementia and other cognitive impairments are already hard on family members, and ESPECIALLY hard when your parent or other loved one is relatively young and appears to have no other serious problems. The causes of “early-onset” dementia can vary wildly, from alcohol abuse to diabetes to problems with blood flow to the brain. The symptoms aren’t always the same as with people well into their 80s, and the progression of the disease can sometimes “jump ahead” from relatively mild symptoms associated with the early stages of dementia to more serious symptoms of “middle” dementia including agitation, hallucinations, completely forgetting loved ones, and combative, sometimes violent behavior.

Since your father-in-law is relatively young, you may be able to slow down the progression of the disease with certain medications. Be sure to check with a gerontologist or other doctor specializing in dementia to see what might be possible. There are meds that can help with memory loss and others that can help with hallucinations and agitation, so make sure you discuss the full range of symptoms with your father-in-law’s doctor, including when he usually experiences them.

Unfortunately, available treatments for dementia can mostly only either slow down memory loss, calm patients down, or help with pain. There’s no cure for dementia at the moment.

What you can do

Medication only helps so much. As the disease progresses, expect it to help less. Meanwhile, what you can do is:

• Treasure the messed-up, crazy moments you’re still able to enjoy with your father-in-law. The time will come when you would trade all the memories in the world just to have those awkward, heartbreaking moments back.

• Help him out by making life simpler. Your father-in-law’s doing the best he can, and right now, that’s living in a house (his brain) where the lights are slowly going out and there are no replacement bulbs. The thinking he’s still able to do is going to be limited at best. Instead of asking him to read the menu when you take him out to dinner, pick three things from the menu and ask which one he likes the best. If he can’t decide, pick something you know he likes. You’re going to have to do this kind of thing more and more as time goes on.

• Don’t hurry him. If it takes your wife’s dad an hour to put on a pair of trousers for an outing, show up at the care facility an hour earlier. Hurrying him is just going to make him agitated and ruin whatever fun outing you had planned, and he’ll stay agitated long after he forgets why he was upset.

• Don’t force him to do what he doesn’t want to. Today might not be the day for brushing his teeth, and he probably won’t die of tooth decay any time soon.

• Don’t argue. If your father-in-law insists on wearing a sweater in July, either a) tell him you’ll get it, then forget to, b) get the sweater but hold onto it, c) be directive – “Pops, let’s wear this shirt instead.”, d) change the subject, or e) let him wear the sweater. Don’t try to explain to him that it’s 98 degrees outside, because he might not know what that means any more.

• Roll with the punches. If your father-in-law has forgotten what salad is (my Mamma thought it was a bowl of grass), move on to dessert or whatever he still recognizes and likes. A time will come when you’ll be happy if he eats ANYTHING, so be happy now that he still likes ice cream.

• Do little happy things together. The meme is right: Life is Short. Eat Dessert First. But really, just about anything your wife’s dad enjoys. A walk in the neighborhood. Trips to Sonic for tater tots. Sitting together on a bench at his care home birdwatching. One exception you might want to consider NOT doing together is hunting. Dementia and guns don’t mix well, and once he has it in his hand, it’s going to be difficult if not impossible, and also dangerous, to try to take it away from him.

• Be kind. The Dalai Lama once said “Be kind whenever possible. It is always possible.” This is especially important to remember in two specific situations. The first is when things get worse for “pops” (they will), and the second is when you’re tempted to beat on yourself for being impatient, upset, frustrated, or not taking good care of your father-in-law.

• Make some “me time” for yourself. Before Mamma died, I had a disturbing but strangely peaceful dream. Mama was sitting in a rowboat next to a pier on a quiet lake near sundown. As the sun sank behind the silhouettes of trees against the reddening sky, Mama’s boat floated farther and farther from the shore. At first, I was upset, then I had this realization that if I tried to swim after her, we’d both drown, and that try as I may, I could not save her. I watched and watched as she receded from the shore, completely unaware of whatever lay out there in the darkness.

• I woke up feeling sad because I knew that part of her journey would be alone and I’d have to find a way to be at peace with that. That evening, my husband and I skipped visiting Mamma. Instead, we went out for dinner. The next morning, we actually felt refreshed and my husband cut flowers from our garden and he and I brought them to Mamma to smell, along with a small box of chocolates she was delighted to get. She ate them on the spot, with a big smile on her face. It was that moment that reminded me I was doing right by Mamma and needed to focus some time on myself so I could be happy with the time we had left together.