Caregiving and Frontal Temporal Dementia

Experiencing the "long good-bye" while caring for an ailing parent slowly dying of dementia is extremely trying, but possibly the most wonderful and meaningful thing you can do for your parent during their lifetime. This article is aimed at those of you who are experiencing the rare and horrible difficulties brought about by Frontal Temporal Dementia. This article is specifically directed to those who have loved ones who are newly diagnosed and are still able to talk and do a few things -though they and those around them are becoming increasingly aware of the waning skillsets.

This author and her husband moved her mother in last year after her spouse passed. Mother was diagnosed with FTD and appears to have most of her difficulties concentrated in the area of the brain that inhibits communication. She listens a wee bit better than she speaks. To help her through the difficult times, I will share what I have learned thus far.

1. Find out if your actions make things worse or better.Until recently, I would wait patiently staring lovingly into my mother's eyes as she fought hard to make the word that corresponded with her thought come out. I was quietly say, "take your time." Mother told me the other day, "Don't do that." I finally realized that me staring at her made her nervous. She'd rather have me carry on with what I'm doing instead of halt everything while waiting for her to say the words she so desperately wants to get out.
2. Don't constantly correcf your loved one's speech. They probably aren't going to get any better, so if you can understand them then they communicated good enough. It's ok to give occasional tips, but you don't want to make them scared to speak at all for fear of being corrected.
3. Help them remain cognizant of any behaviors that may endanger them. It's alright to give tips every now and then. For instance my mother was saying "yes" for "no" and vice versa. I could tell that this might cause her confusion and could potentially cause her danger if she were in dangerous situation and gave the wrong answer. I encouraged her to finish out her sentences so that she would be clarifying her answers. She can't speak full sentences very well, but she tries and it usually gets the point across. I'll ask her silly questions like, "You don't mind if I give all your clothes away do you?" If she says, "No," then I kid her with a phrase like, "Ok I'll start packing them up today. " Eventually, with practice, she learned to either say the right answer or to finish it out like, "No, don't burn my clothes." It has really helped. We review this and practice on it every month or so.
4. Be extremely careful to preserve your loved one's dignity. I walked into my mother's room the other day and it smelled like urine. I blurted out, in the most sensitive way I could, "Did you wet the bed, Mom?" She said, "no," and I began to realize I was mixing up my smells and I think it was some odd combination of her new candle and some other smell in her room that made me think of urine. Anyway, I covered by walking over to the candle and smelling it. I exclaimed that it was the candle and that I often mix my smells up. I said, "I didn't mean to embarrass you...but you know I wet the bed just last year so it happens. It was not fun, let me tell you!" She laughed. I was lying of course...but it helped her to preserve her dignity. In the long run, it's best to avoid injuring their dignity if possibly. Tell your loved one that you are doing xyz because of an issue you have. Don't make it about them. This seems to help alot.