Returned from a month's hiatus -- a blissfully dementia-free trip to a land far, far away -- to find things in a terrible state. Mom has declined, which is no surprise, but is a disappointment; I'd heard that patients plateaued for a while, and was hoping her symptoms would not change this summer. And my dad is back to some kind of frenetic controlling state, in which he tries to right everything that's wrong with the world, with me, and with Mom. This takes the form of constant reminding, haranguing or criticizing. The world remains mute and unaffected, but I'm pissed off royally and so is Mom.
Thing is, it's hard to keep quiet and not criticize her about this and that, and I imagine it's hard if you're living with the patient 24/7, as he is. Her habits are maddening. There's the staring, hanging over your shoulder when you're, say, making a sandwich or a phone call. There's the mad rush to eat, often starting while standing up. (What is it with the craving for food, by the way? Does anyone know? Must ask the doc.) There's doing the dishes, cup by cup, with a paper towel, or picking up crumbs from the floor, one by one, rather than fetching the broom.
I think we're also just enraged that this is happened, and we have no outlet for the anger. It just makes no sense. Obviously. But we are the careful kind, our family. Insured to the hilt, getting flu shots and regular dental checkups. We never saw this coming.
But after a while, I let it go. As long as she's occupied and seemingly content, I don't really care if she wanders around the kitchen for an hour, and if I have to ask her the same question three times before a response. When it's quiet in the house, and we're alone or just with the kids, I find it easier to relate to her. I try to quiet down, to dig down to her level, and to make eye contact, and it helps. But add my father, and it's a recipe for combustion.
Obsessive compulsive behaviors are pretty common with FTD. The food thing sounds like it can also be hyperorality (compulsive behavior with things going into the mouth) that is also common with FTD. I know that one woman used to put out bowls of pretzels around her house for her husband to keep him satisfied. One problem she had, though, was that he became very agitated if he found a bowl was empty. You have to keep telling yourself that your mother is not doing these things on purpose. She can't help herself, it's part of the disease. I've been living with this with my wife for more than 8 years now, 6 as a full time caregiver for her. Take one day at a time. Your father will go crazy trying to correct everything your mother does that he thinks is wrong, especially since her abnormal behavior will get worse and her obsessive compulsive behaviors will change over time. More than likely your mother will become incontinent and that will generate a whole new set of caregiving challenges.
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