Emotional lability, or meds, or???
A difficult day for Larry, and for everyone around him. Today was his evaluation appointment to see if he qualifieds for Access Paratransit, the public transportation service for people with disabilities. Larry's sister, who is an angel, is here visiting from out of state and took him while I was at work. The service sent a van and picked them up, and took them to East L.A. for the appointment; quite a long way from where we live. The whole thing took 4 hours door to door, which is the longest that Larry has ever been in the wheelchair. Judy said that he did great, and was very patient and did not give her any trouble.
The problems started when he got home. Cecilia, his caregiver, was here, and tried to get him into more comfortable clothing; it's very hot and he was in long pants. Nothing doing: he let her use the lift to get him into bed, but then would not let her touch him. I was able to get a diaper on him before the trip, but she could not get him to allow her to take it off, so he was in the same (unsoiled) diaper all day. He got angry and shook his fist at her when she tried to get him out of his hot clothes, and wouldn't let her give him a bed bath or anything else. She is trying very hard to do a good job, but he's just totally resistant to her. I don't know why - I'm glad Judy has been here since Monday, because otherwise I would be wondering if Cecilia had "done something" to Larry...I know that is not the case, because Judy's been here every minute.
Last night he would not let me put a diaper on him (I bought bigger ones, so it's not because of the duct tape!). Same thing: He pitched a fit, grabbed my arm, shook his fist at me and I think would have hit me if I'd gotten in range. This is NOT the Larry that I know. Tonight he did it again. I finally got a diaper on him right before he went to sleep, but he is very angry with me about it and would not say goodnight or even look at me. He did let me give him a sponge bath, but half way through it got upset for no apparent reason and didn't want me to rinse him off.
I don't know what's going on. He's on 2 different anti-depressants, and I wonder if it a reaction to the meds, or if it's emotional lability, or what. I'm worried that Cecilia is afraid of him now and may refuse to work with him, which means we will have to start all over with someone else. Even if she just backs away from the situation when he gets upset, which is what I've told her to do, that means he will just lay in bed all day, and that's not going to work either.
It could also be that Judy is here, and the contractors doing the batroom remodel, and there's a lot of activity in the house. He's not used to that after weeks of total boredom in the SNF.
This is hard. I felt like we were making good progress, and this feels like a setback. He is really angry (I don't blame him), and lashes out at whoever is trying to take care of him. The physical therapist comes tomorrow for the first time; will be interesting to see what his reaction is to that.
I'm calling Larry's doctor tomorrow and I'll talk to him about the anti-depressants and see if he has any ideas. Now that Larry's home he's back to his regular primary care doc, who has had little or nothing to do with Larry's care since the stroke, so he really is not up to speed...hopefully he can help if he will give me the time to explain what's been happening.
Through all of this I feel like I'm doing pretty well. I'm frustrated, and sad that Larry is having so much trouble, but I'm handling it OK and not losing my temper with him. Caregiving certainly does build character, and has made me a more compassionate and patient person, and I'm trying to weather this and keep focused on doing what's best for Larry's recovery. I'm managing to hold it together at work, and juggle everything else, but this has been a tough day.
Enough for now - sleep is sounding pretty good.
-Janine
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