Here's what I mean: my kids want to spend time with their Grandpa, but sometimes Dad will say inappropriate things or change moods in a heartbeat. As an adult, it's extremely hard to not take personally what he says sometimes; imagine an 11 and 8 year old attempting to chalk it up to the disease, which they don't fully understand.
And when the kids don't come, Dad notices, and it of course makes him sad. Then other days he'll say, no, don't bring them up because I don't know what I'll say. So he knows - which sometimes just makes him sadder.
I am trying my best to balance it, but I haven't figured out that perfect solution yet. They exchange cards and video messages, and we take them up in the early mornings when he's a bit less confused and agitated. And the kids seem okay now that he is stable in a nursing home instead of the constant roller coaster of home, hospital, nursing home, repeat. But it's difficult on everyone. The kids don't understand the dementia; they want their Grandpa back; the one who used to take them fishing and regale them with far-fetched stories (think the movie "Big Fish"). They already feel robbed, particularly my daughter, of not having met my mom.
And then there is me, hardly holding it together lately, because after 13 months of watching Mom battle brain cancer and ultimately lose (12 years ago this past week, actually), I'm now having to watch Dad slowly disappear and become a stranger while I try and provide him the best care possible. We've been going back and forth with the memory loss for a couple years now, and now we're at the dementia diagnosis, so needless to say it's been a long train ride of unfamiliar stops and reevaluating the route to take.
I think the biggest fear I have, as a parent, is what my kids are going to have to go through one day. Are they going to watch me wage a war against cancer? Or are they going to be helping me to eat dinner at 73 because I can't remember how to use a fork? Seems stupid to think about, I know, and my parents' illnesses do not mean I automatically will end up with the same fate - I get that. But I can't help but wonder and worry. I can't predict the future, so for now all I can do is make every minute I have with the people I love count. That's all any of us can do.