Another bad episode (Part 2)

Yesterday's crisis turned into quite a huge, draining epic. I was still there 13 hours later when my sister came to relieve me.

Our regular Nurse Case Manager was not working that day, but I was able to speak with one of her colleagues, LF, who was very helpful. I am so impressed with the nurses on the Older Adult Mental Health team. They are wonderful.

LF asked me several things about my mother's general health and eating habits to rule out underlying secondary illness, and then after a lot of discussion we agreed to try a medication that would work immediately to suppress my mother's delusions and paranoia. I hate to have to look toward chemical fixes so quickly, but this situation was quite dire. My mother's delusions and paranoia were preventing her from being supervised and safe, and we needed an immediate solution just to make through the weekend and/or until she can get a proper reassessment.

The only problem is that my mother's specialist was out of town for another 2 weeks, so we had to turn to my mother's family doctor to request the prescription. I was not happy to go to see her, because she is the one who ignored my mother's early symptoms for about 2 years and prescribed some very inappropriate medication early on when she didn't believe my mother had dementia. Her first acceptance of my mother's dementia was when our Nurse Case Manager sent her reams of medical records from the specialists that we had to seek behind her back (because she didn't feel it had been necessary to make a referral to a specialist), and by that time her illness was already advanced.

I was having such a hard time dealing with my mother that morning that I was afraid I couldn't talk her into going to the doctor. I hadn't even been able to persuade her to eat or get dressed properly. She had already had several ups and downs and I knew it would be completely hit or miss whether I'd be able to get her to the doctor.

By some great good fortune, I did manage to get her to come to the doctor with me. I explained to her that we were going for a checkup and to see if the doctor could do something about her anxiety. My mother was actually happy to hear that possibly something could be done about that, because she seemed a bit relieved. She must have realized on some level that there was something unusually wrong. I brought HC along for backup.

I had told Nurse LF about the doctor's ineptitude and that I didn't trust her to understand the problem and deal with it properly, so she contacted her in advance to make recommendations for a prescription.

As expected, the experience at the doctor was a fiasco. She brought us both into her office where she questioned both of us about my mother's health. What a catastrophe that was. My mother didn't understand most of the questions and then didn't answer the rest of them with any semblance of reality. The doctor put me on the spot by expecting me to talk about my mother's behaviour in front of her, which I tried to avoid but when I did offer a few helpful tidbits of info my mother as expected blew up and accused me of entrapping her and trying to control her against her will.

The only good thing that came of it was that the doctor was able to witness my mother's out of control behaviour and begrudgingly wrote out the prescription recommended by LF. I felt so angry that the doctor now left me to deal with my mother's unmanageable mood. I'd be lucky if she'd even come home with me now.

This doctor just has no clue about dementia. She should have seen us separately. That's what happened last time we saw her, but I remembered too late that it had only happened that way because I had called ahead and insisted that we do it that way. This time I had been too flustered and out of sorts to think to plan ahead. But she should have known.

It took awhile for my mother to calm down. We wandered through the mall doing some window shopping,which she enjoys and settled her down. We also stopped at a coffee shop for some decaf and a cinnamon bun. At that point I realized I hadn't eaten anything but a toasted bagel so far that day.

The drive home was fine, but as soon as we got in the door, my mother started up again. She began to question whose house it was, and then questioned who HC was and insisted I call a cab to take her home. Then she turned on me too and yelled at us both to get out and leave her alone. She was impossible to pacify. She misunderstood every word I said. She insisted I call my sister, which I did, and she spent 10 minutes ranting on the phone with her nonsensically.

Both HC and I (and my sister on the phone) knew there was no point in trying to assuage her. We just needed to wait it out and give her space. So we sat in the car in the driveway for over an hour. HC pointed out that it was 4pm, which is sundown this time of year, and that my mother seems to have a developed this pattern of sundowning recently.

If we could have given her the new medication a couple of hours earlier, we may have been able to avoid or at least subdue her present mood. The other problem is that we couldn't actually leave the premises to get the prescription filled at the drugstore, and I couldn't leave HC alone outside in the freezing cold. I also realized it was after 5pm now and I still had eaten nothing but toast and a bit of cinnamon bun all day, and nothing to drink but some decaf coffee.

So I called AC to rescue us. He is super amazing and wonderful and I can always count on him. He brought me a yummy sandwich and some juice, and then went and got the medication which HC and I continued to keep our eye on the house. (HC insisted she wasn't hungry even though we offered to get her something.)

When he came back we finally steeled ourselves to go back in and see how my mother was doing. We realized we were actually afraid! It was dark outside by now, and the house was dark, and it seemed she had gone to bed. So we sat quietly until she came downstairs a little later and then I cheerfully said "hi!". By some miracle, her mood had improved and she seemed quite agreeable. She even asked me if it was time to take to pills (the regular ones she was already taking), and I said yes and braced myself as I added: "And let's not forget this new one that we got from the doctor today". I thought I detected a slight suspicious narrowing of her eyes at first, but she didn't raise a fuss and took her new pill. HC & I were so incredibly relieved! You could literally see the relief sweep over us.

My mother went back to bed and aside from one more brief instance of wandering downstairs, she was in bed the rest of the time I was there. My sister came by just before 9pm to relive me. By this time HC said she felt comfortable enough to stay overnight. We were all hoping that the new medication would help her and MG continue to care for her (MG was due to start her shift early the next morning).

So that's where I left it at 9pm last night. I was so frazzled by the end of it, and am still feeling frazzled this morning. I've tried to catch up on my vitamins and eating healthy food after practically starving all day yesterday. But I don't think I can do a day like that again. I have my baby to think of!

We are all crossing our fingers that my mother will be manageable for the next while until we figure out a better longterm solution (which may involve a care home). On Monday I'm going to chat with our regular Nurse, AW, and hopefully she will be able to help us figure something out.