MUSIC: This is an interesting short film about Woody Guthrie’s years with Huntington’s Disease, when he was a patient at Greystone Park Psychiatric Hospital in Morris Plains, New Jersey. He was picked up by the police and misdiagnosed as having schizophrenia. A similar diagnosis was given to Kathy’s mom in Florida, but at least in Woody’s case they figured out it was Huntington’s Disease pretty early, I believe.
CAREGIVING: It is Saturday evening and today went Ok with Kathy. As the Huntington’s Disease advances the worst part seems to be breathing and coughing. Many HD patients succumb due to pneumonia so I’m doing my best to delay the inevitable. Last night she slept well until about 4 am. She started struggling and her breathing was very wet sounding. At 5 am I put on her next Scopolamine patch. Today, was the day for a new patch anyway, according to the calendar, so I put it on. They take four hours to start working. I propped her up more by pulling her back up the wedge pillow. Eventually she fell asleep and we both slept until 8:30 which is late for me.
It wasn’t as if I had a good night of sleep either. I really don’t function well if I don’t start moving earlier than Kathy needs me. I like to gradually stretch my back and shoulders; and have one, two or three cups of coffee before attempting to move her. But as caregivers we do what we do when we do it.
I cleaned and changed her. Gave her some of her meds. Arranged her in the futon. She was coughing again and I decided to skip breakfast. It is too painful to watch her gasping for air, and it was all I could do to get some of her meds into her. Kathy slept until Pat arrived. She gave her a bed bath and got her dressed. Pat brought a bunch of different patient care products for me to try. Some are pretty unusual: A shower cap with shampoo and conditioner in it. I don’t think you have to rinse it either. Deodorant wipes. Barrier cream wipes. You can warm up some of the packets in the microwave. Seems pretty risky to me but, if you are careful it could be soothing to have warm wipes on your butt.
Pat told us the good news that she will be able to do the bedtime visits. It might be later than Kathy has been used to going to bed, but it will work out fine. The schedule hasn’t been finalized yet. It may give Marty a chance to take me for a walk some nights. After Pat left I made Kathy French toast with generic peanut butter, generic nutella and real (but generic) maple syrup on generic bread. The maple kept it mushy and nearly puréed. She finished about three slices which I thought was good. By the time I cleaned her teeth she was asleep again for over three hours.
I did laundry and I tried to figure out where to shift furniture when the hospital bed comes. I have been trying to find a good use for an antique mission style love seat since the day we were married. Now it is Marty’s couch.
I also slapped together a makeshift ramp to get Kathy and her transport chair out on to the deck. Maybe we can try it out on Memorial Day.