CAREGIVING: On Monday I was supposed to take Kathy to the dentist for a cleaning but I cancelled it. I just couldn’t go through the transfer problems I have had when we get back home. She just can’t go up those few stairs any more. But over the weekend I ordered an inexpensive ramp from Harbor Freight to get her up from the street to the porch. Well, I hope so. It was only about $60 with shipping so it was worth a gamble. As long as she doesn’t roll down the hill into town or into traffic we should be OK. I can cut them with my grinder if they end up being too long. They should be delivered next week.
Tuesday, Erica, a speech pathologist from Baystate VNA came to evaluate Kathy’s swallowing and congestion issues. You may remember that another speech pathologist came early on to help but Kathy put up a fuss. She wouldn’t eat in front of her or cooperate. But this time Kathy was very compliant. Erica could hear the phlegm and mucus before Kathy was even eating or drinking anything at all. In that way it was good that Kathy wasn’t doing well that day. When we go to Dr. Dorantes office for follow-up visits Kathy’s lungs always seem to be clear. It is probably because of the intense workout she has getting into the damn car. She explained to Kathy (or tried to explain) that she needs to get a special swallowing x-ray before they can tell for sure what is happening. She tried to explain the really complicated series of actions that need to be coordinated for Kathy to swallow successfully. She watched her eat cereal which I had moistened in almond milk to soften it up. She counted the number of times Kathy attempts to swallow before she gets it all down. Typically it was between three to five swallows before she was really ready for another bite.
Erica said I really should purée all of her food from now on and avoid having different textures in the same bite (like raisins and nuts). I asked Kathy if we could try it now. I used the food processor to grind up her breakfast. She liked it but was still having trouble swallowing. Then we tried thinning it out with more milk and that really helped a lot. Erica said that some times thinner is better. She also suggested Kathy take a bite, then a sip of juice. Kathy was still coughing occasionally. I asked about food ideas.
We will need to at least discuss PEG feeding, soon. That is feeding directly into the stomach through a small tube. She said no one can force you to use one. Some folks don’t want to ever be fed that way or kept alive that way. It is a conversation we will need to have. I am in favor of it. Kathy can still eat when she has good days or certain favorite foods; but we wouldn’t have to worry as much about getting all of her calories, nutrition and medicines into her. I asked if Kathy had a PEG, and were less congested, would she be able to talk a little better. The answer was unfortunately not. Talking requires even more coordination: between the brain, ears, throat and Huntington’s is taking that away.
Later that day we got an appointment for the barium swallowing x-ray. Instead of our usual humus sandwich I made her a smoothie with banana, yogurt, peanut butter and whatever other stuff I could find. She seemed to like it, but didn’t really eat enough of it. Dinner was pureed lentils, vegetables and rice with curry. That met with her approval.