Things I Learned Taking A Road Trip With An Alzheimer’s Patient
Posted on September 20, 2012
“Would you take me for a walk?” and “I’d appreciate it if we could go for a ride” are the two most common things I hear from my father these days. And like Richard Marx, he won’t give up until he’s satisfied. That’s a reference to a song by Richard Marx for all of you in the One Direction generation who don’t know who Richard Marx is. And for all of you older kids from the Richard Marx generation (like myself), One Direction is another new boy band. Anyway, mom and I took dad on a 9+ hour drive last weekend to Tennessee for an army reunion and we ran into a few things we weren’t entirely anticipating. Allow me to say at this point that it’s a good thing we can have a sense of humor about it.
Dad is about 3 to 3 1/2 years into the advanced stages of Alzheimer’s and the medication doesn’t appear to be slowing it down at all. If you don’t catch it right in the beginning, which remains almost impossible to do, then medication isn’t doing much except offer side-effects. That’s where we’re at. So, when it comes to road trips and Alzheimer’s, it’s extremely helpful if it’s something dad likes to do–he likes to go on long drives, so bingo!–and includes going somewhere he likes to go. Issue. Dad loves going up north, especially to Indian Lake, since that’s where his parents took the family every year while he was growing up. It means something to him and it’s one of the few memories that hasn’t surrendered itself to the disease. Going south to Tennessee? Not really on his radar of things to do. And if it’s not, then you probably want to rethink it.
One thing I’ve learned the hard way with dad is not to believe him when he says he doesn’t have to go to the bathroom. Why? Because once you’ve asked him and he says “no,” he’s now thinking about it. So if you’re walking at the mall, you come to a bathroom and he says “no,” expect he’ll change his mind in a few minutes and you’ll be going back or looking for another one quickly because when the man says he has to go these days, he has to go SOON. This can be a bit tricky on a road trip. I made sure to pull over every so often at a rest stop so he could stretch his legs, take a short walk and tell us he didn’t have to go to the bathroom. Mom and I both asked him to try, he argued he didn’t have to, and we wouldn’t relent until he went in with me. He walked in and it turns out he had to go after all. He surprised himself that he could, not us, but himself and it was a little fight in the grand scheme of things worth winning.
Now, a change of scenery in a place you had no real desire to travel for so long a time will impact anybody’s comfort zone. We didn’t go to Indian Lake, so what did dad really care about the hotel or his surroundings for? And if he doesn’t care about them, he isn’t going to put any effort into retaining why he’s there and when he doesn’t do that, he gets restless and confused more easily. He had a really difficult time remembering what state he was in, why he was there, who everybody was, when we got there and when we were leaving. By that, I mean he didn’t remember conversations with people two minutes later, who they were, why he was talking to them at all, and if I was driving him home or mom was picking him up. He asked me this several times when we were in their room and remained completely befuddled each time I explained that it was his room and that he’d already spent a night in it. The best thing to do in these times is keep him occupied. We brought a laptop so he could use his word search program, workbooks that he could sit and work on, and games we could play, like Connect Four. They helped.
The other thing mom and I did was take him on walks. That man would walk all day and night if he could…and he thinks he can. But here’s the thing. Dad doesn’t so much walk as he does the Mad Monster Shuffle. His balance has always been poor, but it’s even worse now. There are days he can’t pick his feet up, where he’s staggering from one side to the next, and tripping over himself. He barely notices it. He is, in his mind, walking with no (or very few) issues. Being discombobulated in Tennessee didn’t help. He wanted to walk and the spirit was willing, only the body was not cooperating. I’m all for giving dad whatever he can handle, but when it’s physically obvious he can’t handle it, that’s when I put my foot down and the arguments begin.
Mom and I still want to look at dad the same way we always have, only we can’t. And we know that. We want to give him as much of his old life as we can, only we can’t. And we know that. It’s finding that middle ground of how much we can and can’t give him. Only that middle ground changes and it’s not easy keeping up. You have to second guess him. You can’t assume he knows what’s best for him anymore, that he can articulate things appropriately or even in time before they happen. He’ll shove far too much in his mouth because he doesn’t know to cut it up, then choke. He’ll drink too much if you don’t give him a straw, then choke. Worse yet, he’ll deny he ate or drank too much. Why? Because he has no idea he has.
As for the ride home, it was ridiculously long because we didn’t split it up into two days like we did the trip down. I stopped to get gas again about halfway and when I got back into the truck, mom was laughing. This in itself is a little odd since mom hadn’t really been laughing the last few days. Why was she laughing? Because while I was getting gas, dad turned to her and said “I’d appreciate a shorter drive home.” Really, Flash Gordon? So would I. And at least he doesn’t remember it. We do.
Kristoffer Gair (who formerly wrote under the pseudonym Kage Alan) is the Detroit-based author of Honor Unbound, A Funny Thing Happened On The Way To My Sexual Orientation, Andy Stevenson Vs. The Lord Of The Loins, Gaylias: Operation Thunderspell, several short stories featured in anthologies (to be combined in a forthcoming book), the recently re-published novella Falling Awake, its sequel, Falling Awake II: Revenant and Falling Awake III: Requiem.
3 Responses to “Things I Learned Taking A Road Trip With An Alzheimer’s Patient”
September 20, 2012 at 2:17 pm
Kris, I do hope you’re planning a book about your and your family’s dealing with Alzheimer’s. It’s a story that really has to be told, and you do it with infinite kindness, patience, love, and humor that it would be a shame NOT to put all these blogs into a book.
Katherine Trick says:
September 20, 2012 at 8:50 pm
Great idea Dorien. I was thinking the same thing. These are great stories that show a way of dealing with the disease with kindness, patience and humor. I think your experiences, Kris, would be helpful for others to hear who are going thru the same thing as you.
September 20, 2012 at 9:38 pm
What I have in mind is a work of fiction. It’ll be my first real drama. Writing something from my own life like that…I don’t know that I could do it. I don’t know that I’ll want to relive all of these blog posts again for a long time. If they help other people, they’re welcome to them. For now, this is still the first quarter of a potential 20 year nightmare.