Wednesday, November 30, 2016

Being Talked Down To

This was one of those weeks when I just didn't feel like I had anything worthwhile to blog about. I have not been feeling very chipper. I have been dealing with an acute gout attack and the medications I was prescribed were not accepted by my body at all. Finally, between the doctor and I, we seem to have hit on the right combination of drugs to calm everything down. Today, I must say, I actually feel good. I got a tiny bit of Christmas decorating done. I have instructed my husband to only bring a little bit up from the storage area at a time so that I don't overdo it, especially since I am supposed to be off my feet.

I was actually feeling good enough to make a couple phone calls. I don't know if I have written before about my huge reluctance to make phone calls. I am just not a phone person and will put it off as long as I possibly can. So for me to make calls, it is really, truly a good day.

The first call was to the organizer of a local support group for caregivers. They meet at a local restaurant and I knew it was one Thursday a month, but didn't know which Thursday, so I called and spoke with her at length. We were having a really good and intelligent conversation. It turns out the December meeting is tomorrow, but I knew darned well I couldn't convince my husband to go on that short of a notice. The only way I have convinced him to go at all is that my awesome friend was interested in going and realized that it was important for him to go as well.

We continued talking. She asked for the names of who would be attending and I gave them to her but she had to do it. She asked me for whom they were caregivers. I responded "That would be me!" She questioned this and I explained that I have FTD and realized how good this might be for my husband to attend. He can sit there over lunch and vent his frustrations, listen to others and maybe pick up some tips along the way. Throw in a decent lunch and sounds perfect.

As soon as I told her I was the one being cared for and have dementia, it was amazing how quickly everything changed. She started talking at me (no longer with me) as though I was a ten-year-old. She became condescending and started using simpler words. She also began speaking louder and was sure to enunciate every word clearly. I told her they would not attend tomorrow but to count on them for the January meeting. If anything changed, I would call her. Then it happened! She told me to have one of them call her to confirm what I had said. She thought it was better if the reservation was made by one of the caregivers. Arrrrrghhh!

I am amazed that I did not say to her, "I have dementia but I am not stupid!" Afterward, I was wondering if I should have said something, but maybe in a kinder way. Then I realized that I should be proud of myself for controlling my anger and quickly ending the conversation.

I cannot explain enough just how frustrating it is to have this happen. First of all, nobody seems to realize that dementia is not a disease. It is a symptom of many diseases, but is not one in itself. Not all of the diseases steal your memory or all reasoning ability at the onset. Yes, it will happen to me in the later stages of FTD but I can still deal with things pretty well.  Her immediate and total change in conversing with me was totally unacceptable to me. I truly hope that she is not the facilitator of this or any other group and that she is simply the organizer, scheduler or some such job.

I really, really hope that she is not now, nor will she ever be, a caregiver for anyone with dementia.

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