Two weeks ago Dad started sleeping a lot better. For a while he was waking every hour starting around 11pm. He'd get up to go to the bathroom, but tell Mom he needed help. Or else he'd start talking something that was critical to him, but didn't make any sense to Mom. Or he'd turn on the TV. There were a few nights where I would suddenly awaken because I heard voices, but because they didn't sound particularly intense I'd simply roll over and go back to sleep. So I had no idea that both Mom and Dad were becoming more and more sleep deprived. But when two weeks ago coincided with right before Dad getting suspended from daycare (still cracks me up, ha!), and his neurologist's NP prescribed an anti-depressant, we were hopeful. The NP said it would help him sleep better, which makes sense because one of the side effects of many anti-depressants is drowsiness, and you're normally supposed to take it shortly before bedtime. Unless you're a night owl like me, then you take it after dinner, lol (I'm on a low dose of doxepin for chronic itching). From that first night Dad slept like a rock. Mom had to wake him at 1am to go to the bathroom, and he would get up around 4 by himself to go. And he'd wake at 6 ready for the day.
Unfortunately he also started to become testy, combative, and would throw a hissy fit if we didn't agree with what he wanted. Well that explains why he finally got suspended from daycare. The staff said he was starting to yell at them, and for these type of places, if you become uncooperative and belligerent, well, they don't want you. So from the standpoint of helping with daycare, this med is going to be a dud.
In my last post I mentioned that he's gotten obsessed with his mouth guard. Yesterday I woke at 7am to heated voices next door (we're all sleeping in during the holiday). When I checked in I found Mom and Dad having a standoff over his mouthguard. Dad kept insisting that he had to have it, even though it was already in his mouth. And he couldn't finish getting dressed until it was settled. I won't go into a play by play over the next 15 minutes, which involved me showing him the mouth guard's empty case, him taking it in and out of his mouth, but finally Mom forced him to take it off (we though it was stuck but apparently he was clenching his teeth while trying to get it off) and put it away. Then I turned on the TV and sat with him while Mom went downstairs.
You'd think that would be the end of it, because we went to church service, went to coffee hour and had a great time, and he stood at a bedroom window watching the kids sledding in the yard and loving it. But no, at lunchtime I went up to see them in another standoff. Dad wouldn't take off his mouthguard, and Mom wouldn't let him wear it to eat lunch. We still have to talk to his dentist tomorrow about whether eating with it is a bad idea, but in the meantime Mom didn't want Dad to damage it or improperly chew his food. Mom went downstairs in a huff and I tried to get Dad to take it off. Boy was he pissed. "You don't get it! The problem is basic! I'm supposed to wear this all the time! Fine, if I can't eat then I won't eat! he yelled over and over. At one point during his rant I just looked at him and thought, I am having a logic argument with a 3 year old. Only the 3 year old is trapped in my dad's body. He has a thought he can't let go of, and I can't persuade him otherwise. He actually calmed down and told me in his normal voice of old, "you know, this mouthguard is important for bodily functions. I really do need to wear this all the time, otherwise nothing works." The upshot was Dad didn't eat lunch, and stayed in his room until almost 4, when he wandered downstairs looking for Mom. She was playing a game with us, but got up to make him something to eat. How she managed to persuade him to give up his mouthguard I don't know, but I suspect hunger had something to do with it.
At this point taking Dad to Taiwan seems to be coming off the table. It's been suggested that we put him in respite care for two weeks, and go with just Mom. The other option is that we just won't go. But I can't even imagine what the 25+ hour plane ride is going to be like if his behavior is so unstable. Last night he went to bed super early and today he is in a great mood, without his mouthguard. But we can't count on this continuing. Today, it's the mouthguard, tomorrow it'll be something else. Every good day is a bonus, every bad day is a given. This is not the kind of conditions that one hopes for when planning an international trip.
Follow up with the neurologist's NP is Wednesday. I'm going to make it clear that this particular med is NOT working. Mike suggested asking if simply having a sleep aid is an option. At the very least he needs to come off this med (which has a weaning period, argh) before trying another. Last night Mom said, "he's gotten so bad in just the last two weeks." While this could be the progression of the disease I still think it's a side effect of the med. I myself have to be careful with doxepin even though I'm on an extremely lose dose because it can make my fuse shorter. So if anyone is reading this and considering mood altering meds just be aware or be sure to ask about ALL the possible side effects.
Thanks for sharing. i find a super low dose of Elavil helps with sleep and depression. It's a process to find the right med and dosage. People react to medications differently and with psychotropic meds, it takes a while to see the actual effect. I wouldn't give up on the med option at very low dose. Sleep is very important for quality of life. Again, I highly recommend Elavil (amitriptyline) if you're just looking for sleep and mild depression relief. I find it very mild (10mg) and I've tried about 3 other different types of antidepressants. It is not an antipsychotic. That is another class of drug that the dr. may recommend. Also, i would start with a super low dose of any med that is prescribed and evaluate effect carefully at each dosage before increasing to the "recommended therapeutic leveL". For Asians (or smaller framed people), we are more sensitive to the medications it seems. You are doing great! You're parents are very lucky to have you there to support you. xxoo
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