Primitive Reflexes and Further Decline, But Still Connecting

It seems to be happening so fast! It's been a difficult few weeks, as I observe further decline in Jim's ability to function. Today I updated the specifics of these changes on the second page of my blog, which can be found here.

Primitive reflexes are seen in infants. Sucking reflex and startle reflex are two such examples. Developmentally, these reflexes disappear at the baby grows. In my quest to understand the changes that I've seen in Jim, I've discovered that these primitive reflexes can reappear in late stage dementia. Over the last few weeks, I've observed both of these reflexes with increasing frequency.

At meal time especially I see the sucking reflex. Anything that he can bring to his mouth seems to elicit this response. When I approach him with a spoonful of food, he often will purse his lips, trying to suck on the food that is on the spoon. He  often reaches for utensils, napkin, placement, clothing protector, seemingly anything but food, and will exhibit this reflex. It has resulted in some challenges to help him actually ingest food. His weight is stable, and he drinks plenty of fluids (via straw), so no worries at this point about adequate intake.

Yesterday there was a close call at bingo. As I've mentioned before, Jim is a passive participant at structured activities. He seems to enjoy being present, but is not able to actually participate. Yesterday he picked up a bingo chip, brought it up to his mouth, made a sucking noise and it went into his mouth! I was able to safely extricate the chip without much difficulty, but it was alarming to me. If he had actually tried to swallow it he would have choked for sure.

I've notified the appropriate staff, including therapists, about my concerns. Putting into place the appropriate safeguards within a very busy memory care unit will be challenging for sure.

Jim startles very easily. In spite of my soft voice and slow movements, the slightest unexpected movement or sound causes him to be startled. His body jerks back, his arms go up and there is an involuntary movement in his legs. I'm doing my best to keep things even keeled for him, but sometimes it seems unavoidable.

I've read that as the dementia progresses there is a loss of peripheral vision and eventually a loss of distance vision beyond a couple of feet. Jim seems to have lost the peripheral vision. Not sure about the distance. But I'm grateful for my own awareness so that I can adjust what I do in supporting him with this change in vision.

Physical therapy continues, but I have to say it seems pretty discouraging. I'm not seeing improvement as I had hoped. If anything, he seems more unsteady when standing.

Awareness of his surroundings seems to be diminishing further. It's harder to break through and find him. The vacant look is increasingly present. But he's still in there, and I can still find him.

Yesterday we were sitting in his room, he in his wheelchair and me on his bed. On a whim, I lifted one of my legs and rested it on both of his legs. He immediately started rubbing and massaging my leg! Wow! It was an incredible way to connect with him. I took my shoe off and he started massaging my foot! An amazing physical and emotional connection that made us both very happy.

Years ago we used to give each other back and leg massages, especially following a difficult hike or bike ride. Somehow his brain was able to fire on all of its cylinders at that moment yesterday  and create an experience for us that I will never forget.

Still able to connect, to find him.

Thanks for stopping by. I so appreciate the support of all my kind readers.