Aphasia

Looking at my experience, that deep sadness is intensified because I’m taking care of a LO with dementia. Someone posted about Dasha Kiper’s book, Travelers to Unimaginable Lands. That really hit me when the person talked about the loneliness in caregiving is because you’re in a different reality than the LO with dementia. With other terminal illnesses you are in the same reality and can go through everything together. My DH doesn’t make sense most of the time either when he speaks. I miss him so much, I went through old voicemails the other day playing ones from him just to hear and remember how he used to sound :(

As my dear wife lost her ability to communicate I became frightened that I would not be able to care for her needs properly. Most of the time following that change she never said much, just sat quietly sometimes playing with her toys. I realized that in her own "new" way she was communicating with me but I had not learned her new "language". It became gestures, looks, fidgeting, hand activity, etc. An example was when she would begin to try to move her legs from her reclined position to the floor. That was her telling me she needed the bathroom. I found specific words that, when spoken carefully and in front of her face, caused a facial reaction indicating she wanted to eat. It was a struggle but I was able to care for her and take care of her by watching for her signals. Plenty of mistakes of course but it got us through. I had to teach caregivers her language for the moments when I was not with her. And, having said all of that, there would be those rare and so memorable moments when she would look at me and say as clearly as she had ever spoken, "thank you for taking such good care of me". From her world of silence she would find it possible those few times to say that to me. Talk about bringing one to their knees.