Discovering You’re Doing It All Wrong
Posted on October 29, 2012
Mom and I have been reading some books on Alzheimer’s and realizing these would have been helpful long before now. Oh, yes. I love reading up on suggestions from people who’ve already gone through this with loved ones only to discover we’re doing almost all of it wrong. How so? Because, as the book rightly explains, we are constantly attempting to draw my father back into our world, the world he’s left and can no longer function in the way he used to. We must therefore enter his world. Sound easy? It’s NOT. Oh, hell to the no it’s not!
The biggest problem I have is attempting to apply logic to some of the behaviors. Dad does something new and different behaviorally every couple of weeks. The odd thing is he’ll do one thing with me and something completely different with mom. There are definitely behaviors that take place with both of us, but we’re sometimes puzzled why one shows up with her and not me and vice versa. You can’t predict it. Every patient is different. You can only try to roll with it and not apply logic, which I’m so prone to wanting to do because then I can understand it. Got news for myself; there’s nothing to understand because it defies everything I know.
For me, the worst part of dad’s Alzheimer’s is the repetitiveness. Oh, dear God. When I take him for a walk at the mall or for a ride, there are days he’ll thank me every 2 minutes. The bizarre thing is if I tell him “If you thank me one more time, I won’t take you to the beach (or for the rest of the drive),” he’ll stop. The incessant commenting on everything is another pain, mostly because there’s nothing to comment on. For all intents and purposes, he’s talking to hear himself talk. The man barely said eight words while I was growing up and now you can’t get him to stop. If I take him to the beach and then stop for gas, he starts the whole yammering thing the moment I get back into the vehicle. The fix? I stop for gas first and tell him “If you comment when I get back in, I’m not taking you to the beach.” And he won’t comment. Well, mostly. Some days are more successful than others.
Now, you may be thinking it sounds cruel to try and get an Alzheimer’s patient to embrace a little peace and quiet. No, it’s not. When you’ve experienced three years of it, trying to find ways to get a little quiet time instead of losing your temper is the better way. Is it the right way? Not according to the books. Enter his world. I can only take so many steps into his world before I’m going to run screaming into the night. And for the record, for every time I babbled as a child and he had to listen to it, good. The experiences are evening out.
Going out to dinner with dad is a special treat. He’ll dismantle a sandwich and eat it in a very specific order. If you try to tell him “Dad, you should eat the sandwich as a whole,” he’ll reply with “It’s better for my teeth if I eat the vegetables last.” There’s no logic. He believes it, so it’s real. I explained to him in the past that he’s wrong and that didn’t work. We told him the doctor explained that he was wrong. Forget it. That was then. Enter his world. This is now. He believes it, therefore it’s true. And, honestly, just because it’s odd to us doesn’t make it unacceptable for him to eat that way. I can totally live with this quirk. I think it bugs mom a little more.
His lack of patience is a little more difficult to deal with, though. We went to the mall last week and I decided to stop and get us a pretzel. The girl behind the counter was finishing up a work-related task, so I stood there and waited. Dad waited less than five seconds before a very, very, very loud “hmmmmmmmmmmmmmmmmmm!” came out of his mouth. From anyone else not suffering from Alzheimer’s, that would have been the ultimate in rudeness. I asked him why he made the noise and he told me “I wanted her to know we were here.” Enter his world. It’s not rude to him. The countermove; I have him sit at a table right next to the pretzel stand where I can watch him and he can wait while I get something for us.
I love my father. I don’t like the personality that’s emerged and realize it’s not him. The problem is this personality resides in my father’s body. He’s still a human being and he deserves all the respect and comfort we can give him, but life has become a series of moves and countermoves. It’s a chess board with no discernable rules, pieces or consistent squares. There’s no planning two to three moves ahead. We know what the end result is going to be and the general direction of where things are going, just no specifics.
We can only keep trying to enter his world.
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.
18 Responses to “Discovering You’re Doing It All Wrong”
October 29, 2012 at 9:08 am
Once more I stand in something akin to awe, and definitely total admiration, for you in dealing with your world and your dad’s situation. I honestly don’t know how I’d be able to handle it. It’s amazing what we humans can deal with when we have no alternatives.
Have you thought of doing a book of your alzheimer-related posts?
Katherine T. says:
October 29, 2012 at 9:15 am
I was thinking the same thing, Dorian. Kris’s stories and thoughts on this experience would make a great book. Especially because of his humor in the way he deals with it.
October 29, 2012 at 10:11 am
I have thought about it, but it would be a pretty dark story. And I don’t want to write it anytime soon since I’m already having a difficult enough time finishing the one I’m already writing. One day, though.
Katherine T. says:
October 29, 2012 at 9:12 am
You are earning a special place in the heavens with your understanding and patience. I’d be a raving lunatic by now, myself. Although, that might make the job easier, I suppose. We’d be in the same mind space and could enjoy it together.
Thank goodness you and mom have each other. Your saving each others sanity one day at a time. Hang in there. Deep down, dad knows all you’ve done for him. Maybe his incessant “thank yous” are his way of telling you he loves you. Just a thought……
October 29, 2012 at 10:14 am
Thank you, Katy, but I have to tell you that it doesn’t feel like we’re earning a place anywhere. At least not me.
Hearing him thank me is one thing. Hearing it every two minutes is enough to drive everyone insane. Having him tell you his every move before he makes it doesn’t help. And three years of it? You just want a little peace and quiet.
October 29, 2012 at 9:28 am
I have an aunt with alzheimers and when her son died a couple of years ago, she couldn’t remember whose memorial service she was attending. Then suddenly she would remember and start grieving afresh all over again. It was the saddest thing I ever saw, sadder even than my cousin’s death.
Love to you and your mom.
October 29, 2012 at 10:19 am
The books cover situations like that and it’s just sad as heck. They tell you even though you may feel bad about lying to a loved one, if a family member has passed on and they ask about him/her, tell them what they want to hear. They’ll forget about it soon enough and be none the wiser.
Jeff P says:
October 29, 2012 at 12:00 pm
Sometimes I lack the vocabulary to express the emotions of what I would like to say. That being said, I send you strength and patience.
October 29, 2012 at 12:02 pm
You do just fine. =) I lack it, too.
Lloyd Songal says:
October 29, 2012 at 2:21 pm
This is on my iPhone. Can you add another address for my laptop?
firstname.lastname@example.org. It’s much better for pictures and reading and also typing is much more easy.
It’s a MackBookPro laptop. The thing was it came with Apples new Operating System O.S. MountIn Lyon; which was totally different than the older O. S. they used, Snow Leopard which I was just really beginning to feel comfortable using.
Bobbie B says:
October 29, 2012 at 2:57 pm
Hugs to you most of all! This is kinda how we have to deal with Heather. It isn’t “our” world, it is “her” world. In her world gritting/grinding her teeth is her way of “talking” to us. She has no verbal way of telling us what is wrong or if she is in pain. I do admire your humor and the way you are handling a very tough situation.
October 29, 2012 at 8:59 pm
Bobby, if I didn’t try to make light of it in some way (hopefully still respectfully), I’d go nuts.
Bobbie B says:
October 29, 2012 at 10:31 pm
October 29, 2012 at 11:03 pm
And you KNOW how fond I am of my nuts.
Lloyd Songal says:
October 29, 2012 at 8:32 pm
I did read your piece earlier, it’s very interesting.
I wrote you a really long lengthily reply. Did you get that?
Sometimes I also have to scroll down After hitting send and their is also a post button but not always.
I have one Fb account on my laptop when I started out, and most everyone is on laptop except you and a few others,
Then I have another account on my phone, to which everyone added me that I asked to on the other account as well.
I do plan to keep them separate fit the present.
Let me know if you got my post, and if not I’ll zip off a little if your interested.
October 29, 2012 at 9:01 pm
I see one reply, but I don’t believe it’s the lengthy one you describe. I checked to make sure it didn’t caught in a mail filter and it didn’t. Not sure what happened there.
October 30, 2012 at 4:59 pm
You’re a gentleman, Kris, meeting a sad and difficult situation with gallant good humour. Best wishes to your and your mum.
October 30, 2012 at 7:27 pm
Thank you, Elin. There are days I don’t feel like a gentleman at all. It’s a strange feeling to look someone who resembles your father and still is somewhere deep down inside, but who no longer make that connection to the past through memory. It truly boggles me to think about.