Dad knows he has dementia. What should I tell him?

My dad has early onset dementia, so apart from the usual, he’s pretty lucid. He used to be a CPA, and while he can no longer even balance his own checkbook and can’t be trusted to drive without getting lost, he knew something was “off” even before I did. I took him to a neurologist, who ran some tests and made the diagnosis. Dad was super chill about adding me to his checking account and signing papers for POA, and even told me how he wanted his care administered. It was a good call. It’s a year later, he’s slipping downhill a bit more, and everything is in place. But here’s the problem: Dad was super open with me about his dementia, and I feel like I’m betraying him when I hold back info about how bad it’s getting. What to share? What NOT to?

How to make the call

For dementia caregivers like yourself, nothing is as wonderful as having that first awkward transition from independence to some form of assisted living go smoothly. So pat yourself on the back for handling it all with grace and dodging a bullet!

I think the real decision here is whether anything you DO share with Dad is a) distressing to Dad, and b) can be acted on. If Dad TRULY FEELS BETTER watching along as you monitor the disease’s progress and can still take an active role in expressing his preferences, it may give him some sense of control over his destiny to update him or involve him in decisions.

If, on the other hand, hearing that he’s forgotten the name of his wife puts Dad into a weeklong funk, makes him cry, or leads to agitated, obsessive, or perseverating behavior, then it’s probably a bridge too far.

When to make the call

I think with your dad, the time to make the call on whether or not to tell him what’s going on with his dementia will be decided by how he reacts to the latest news, which will be one of four ways: acceptance, worry, agitation, or panic.

I knew while Mama was still living at home that things were going downhill for her mentally. She had been a university professor who prided herself on mental sharpness. She was well-read and computer literate. But a time came when the clutter in the house that might have once been “projects I’ll get to someday” was becoming unmanageable. She imagined rooms in the house that weren’t there, and she was slowly forgetting how to answer the phone. Things were getting to the point where the only way I’d know if she was okay would be if I made a 600-mile car trip and physically checked in on her.

Then one day, she miraculously figured out how to call me. The voice on the other end, which sounded like a frightened little girl, was explaining to me that she’d accidentally taken an overdose of her meds, but she didn’t know which ones and didn’t know what any of them did. I frantically pulled up Mama’s list of meds and an online pill identifier and figured out that, thankfully, it was nothing more than a digestive aid and that at worse, she’d be spending quite some time in the bathroom for the next day or so.

But it was a wake-up for me. Mama’s situation had become dangerous to her health and safety. I told Mama that I thought it was time we lived a little closer to each other; and realizing the road ahead wasn’t going to get easier, she agreed. That same week, we moved her to dementia care.

As you share results of doctor’s visits with Dad, check his reaction. If he seems to still be fairly lucid and accepts the news well, it’s probably okay to keep sharing. If he doesn’t understand, or worse, DOES understand and becomes agitated and fretful, it’s probably time to stop updating him.

Dealing with agitation

If Dad’s getting agitated with the updates (or just agitated), stop giving him updates.

Then check his meds and his comfort level—-some meds Dad may be taking can have side effects that lead to physical or psychological discomfort. These are not conditions under which Dad will take ANY news well.

Some things you can do:

• Check his meds and when he’s taking them. It’s possible Dad’s meds are causing the agitation, either when they “hit”, when they wear off, or as a side effect.

• Check if he needs to use the bathroom. Sometimes agitation can be due to some simple unexpressed feeling like needing to pee. Give Dad guidance and social cues for self-care, such as telling him YOU need to pee and suggesting he do the same.

• Tell him you need his help with something. It can be a jigsaw puzzle, a drawing, sorting beads…it doesn’t matter. What does matter is that it keeps him occupied, it makes him feel useful, and it moves him away from whatever is agitating him.

• Change the subject. When Dad’s worried about “reconciling the August financials” for a company he left 20 years ago, Tell him about the weather. Don’t ASK him about the weather, because he’ll probably feel put on the spot to say something, then feel some distress at not knowing what to say.

• Surprise him with something pleasant. Everybody likes presents and surprises. When all else fails, break out the cookies and chocolates.

What you CAN tell Dad

Since Dad’s been pretty open with you about his concerns but perhaps now doesn’t react well to updates, share what DOESN’T upset him. Here are examples:

• When you’re making changes to his meds. If the doctor says he wants to put Dad on Namenda to help with his failing memory, tell Dad “This is Namenda. It’s to help your memory.” By framing updates in positive or neutral terms, you acknowledge the openness he’s demonstrated in sharing his condition, given him a sense of where things are going, and perhaps even allowed him to hope things will stabilize. Even if he knows that’s not entirely true, it demonstrates that you care about his feelings. And if he doesn’t know or remember what you’re talking about, it does no harm to give him a positive or neutral update. You may have to repeat it, though, and eventually skip the updates altogether.

• That his safety is your utmost concern. At some point, the most Dad will be able to process is that you’re taking good care of him. Even when the day comes that he forgets who you are, confuses you with his deceased sister, he’ll still know what love and kindness feel like.

• That you’re happy to see him again. Dad’s on a journey whose final steps he must take alone, which makes every remaining moment all the more precious. Most patients with early onset dementia only survive another 4-5 years, so make the most of your time with Dad. Visits will almost certainly feel bittersweet, so let the unbridled joy in seeing him each time come through.

Tell him you love him

You may have had a rough relationship growing up with Dad. There may be emotional baggage. You may not like his rabid political rants or the fact that he still smokes when every day you’re afraid he’ll set the house on fire. NONE OF THAT MATTERS.

Tell Dad you love him.

It doesn’t have to be in words. It can be a hug, precious time spent together…anything. It may also be hard to do under the circumstances. But do it while you still can, as often as you can—-for both of you.

Every time I visited my mom, I wanted to cry, because I knew how the story would end, but I tried very hard not to cry in front of her. Instead, we went to the arboretum together and sat together on a bench near a field of flowers and let the sunshine warm our faces. Then we went for cookies and ice cream and milkshakes.

And those are the memories I cherish the most.