CAREGIVING: Sorry I’ve been scarce lately. Some friends have contacted me worried – expecting the worst – because I haven’t been blogging lately. Actually things with Kathy have been OK. There are some rough moments for sure, but overall she seems stable and content. I’ve been adjusting the timing of her meds, so she isn’t quite as sleepy during the day. One of her meds, a Scopolamine patch she wore just behind her ear, worked pretty well for months. Then it began irritating her skin. Finally it caused a blister on her neck. Her doctor switched her to a new medicine called Meclizine. Both meds are prescribed for motion sickness. No, Kathy isn’t going anywhere. And she isn’t dizzy. In her case they control the secretions that drip down, cough up, or congest her. When I start to hear a wet, gurgling sound when she breathes, it means I need to suction her and it might be time for more meds. I also use regular, over-the-counter Benadryl for the same purpose. It dries up some of the gunk down there. And I fish out what I can reach with the suction machine.
Kathy’s meds (circa July 2014) with the lid of the pill-box removed.
For the most part, Kathy sleeps through the night. Except when she doesn’t. There are the occasional middle of the night episodes: coughing and gagging; using the suction machine at three or four in the morning; trying to catch some sleep on the futon to be close by. Fortunately it is rare. I bought a baby monitor (thanks to some of your contributions). I use at night. With Marty curled up on the floor next to me and the baby monitor, it is a symphony of snoring and breathing.
I have pretty much stopped giving Kathy some of the supplements I was giving her. Her liquid food has 100% of everything. I do give her a baby aspirin every other day, Vitamin D, Vitamin C, and we split a multivitamin between us. I still give her some CoQ10. Recent Huntington’s Disease research has given the thumbs down to it but it might still be good for heart health.
Getting the meds into the feeding tube took some getting used to, but it is still easier than trying to get Kathy to swallow. I crush each group of meds with a mortar and pestle and add a small amount of water. Some tablets like Depakote have a coating that turns into cement. It can clog the tube and the little pink bits seem to stick to everything. The next Depakote refill will be the liquid version, if we can get it at our pharmacy. For now I have figured out a way to let the pink crap sink to the bottom of the water. I use an irrigation syringe to pick up the meds and water and push it into the feeding tube.
I give Kathy her meds four times a day. It just happened that the pill-box I bought had four spaces: morning, noon, evening and bedtime. That is also when I give her water to keep her hydrated. I’m supposed to give her about a liter of water a day. So it helps to have it broken up like that. When I try to give her too much water at the same time she has problems keeping it all down. If she needs suctioning at the same time, there is a risk she will gag and regurgitate the water and meds. I’ve learned to suction her before I give her the meds and water. I also use an extra bed pad as a big bib to catch any overflow. It happens.
The syringes they supply for hydrating and giving meds don’t last long at all. The food company sends a few each month but the black rubber part wears out. I did figure out that if I put a little cooking oil on the rubber plunger they last longer. And naturally, you have to keep them clean with a bottle brush or something. By the way, we don’t use any special water for the feeding tube. They instructed me at the hospital that anything that can go into your stomach can go into the tube: tap water and canola oil. I’ve thought of giving her prune juice but lately she hasn’t needed the extra incentive.
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