September 6, 2012
What's it like to have dementia?
I am trying to have the mindset that Dad wants to get along and he wants to do what we want but he doesn't because he doesn't understand what we want him to do. Thinking about his defiance this way pretty much destroys it. It becomes miscommunication instead. I really don't think he's selfish. It's hard for me to remember, but this may not have been the case five or six years ago when he could still talk and do whatever he wanted via brute force. I remember physically fighting with him a lot because that seemed the only way to get through to him, and that never ended with either of us feeling happy.
Speaking of Dad in the past: I remember that he frequently ignored anything we said or requested. A couple examples I can think of are (1) demanding that he blare music from the car stereo and then point it out to passerby as if it wasn't readily apparent and (2) engaging everyone he met with his light-up wind generator. Oh, and he also insisted on rearranging parts of my room or bathroom. These things all seem to have to do with preference and consideration for others--perhaps two things that develop in the frontal lobe of the brain.
Now that he's more docile, I find myself categorizing anything he does as either forced habit or miscommunication. He goes to the fridge a lot because that's a familiar, habitual action. He still brushes his teeth and shaves and goes to the bathroom because he's been doing those things for over 50 years. When it comes to following directions, he can't often understand what we want so his first reaction is to do what he normally does. When we don't like it we have to show him or physically move him around because English is no longer his primary tool for communicating. He speaks his own language now, "Robbish," perhaps, which no one else really understands but we are learning.
I got a sample of what it might be like to speak only Robbish the other day in the car with him. I have a beaded bracelet around the stick shift in my car. They were a gift from a friend who told me they are called "worry beads" because people (in Turkey, I think, because that's where he got them) used to fiddle with the beads when they were feeling flustered--like a stress ball. I was fiddling with the beads in one hand while driving and Dad took them and promptly put them back over the shifter where they originally were. I picked them up again and said I wanted to hold them, but he immediately put them back over the shifter and held them down so I couldn't pick them up again. When I reached for them again, he pushed my hand away and continued to hold the beads down.
| Turkish worry beads. |
To me, he made no sense. Obviously, the beads have real function and nothing changes whether they are over the shifter or not. But in Dad's mind, they needed to be there, and he was trying to communicate that to me. Since he can't use language, he just did what he wanted and hoped I would understand. It's the same when I'm being forceful with him. To him, taking a shower is pointless, but I force him to take his clothes off and bathe anyway. He gets frustrated and just doesn't get it, just like I had no idea why he wanted those beads on the shifter, but eventually I gave in and let him keep them there. (He forgot in about 60 seconds, anyway.)
Living life like that on a day-to-day basis would be really hard and exhausting. In the end I would probably lose the desire to do what I wanted and just settle with being told what to do. Maybe that's where Dad is with most things now. Maybe he's realized that trying to have his way with everything is not worth fighting for. Maybe he's just too weak to physically resist.
I wonder all the time if he has meaningful thoughts that he just can't express. I at least know he would like to talk to us. I remember when he would always be talking and we could never get him to shut up. We couldn't imagine the future when the disease would progress and he'd lose language skills and become de facto mute. But here we are, and not only are we dealing with his current state but we're consumed by it, and we can't imagine what he will be like in the future. Let's at least keep in mind that in some inconceivable future we're going to be living a life without Dad. But that time is not now!
We all have our own subjectivity, and this ultimately means we all speak our own language. "Good" to one person is very unlikely to mean exactly the same thing to another. The same is true for "family," "food," "school," and even "tree" or "road." No one can fully understand what another person says. The closest we can get is by sharing experiences. This is what makes life so fabulously interesting. Life is a big old challenging game where we all try to learn each others' languages in order to get stuff done and create happiness.
So let's speak some Robbish before it goes extinct!
My yellow zucchini bread is done! Mmmmmm, I wish you could smell it! It smells wheaty and nutty and seedy (it's packed with anise seeds) and squashy and warm. Of course, you'll never really know what I'm smelling or tasting. So just come over and try it yourself and then we can really speak each others' language!
 |
| My yellow zucchini bread. |
Note on the last couple days: I didn't cook anything after the curry because I made so much that it will last me the rest of the week and it's taking up the whole fridge anyway.
