MUSIC: I am humbled and grateful. Some of my musical friends are giving a concert to benefit Kathy and the Huntington’s Disease Program at UConn Health Center. That is where Kathy gets treated for HD (and I get support). The concert will be Sunday, July 27th at the Nacul Center, 592 Main Street, in Amherst, MA. Bruce King is a wonderful singer and guitarist. He holds the distinction… Read more →
Category: Caregiving
Getting back into a schedule
CAREGIVING: The following few weeks in June had their ups and downs but at least it wasn’t the roller coaster that it was when Kathy was in the hospital. There is a routine that we got into and although there are always changes and tweaks, a schedule helps a Huntington’s Disease patient. It is one less thing to get anxious about,… Read more →
So, where were we?
June 23,2014: Things are getting back to a vague sort of normalcy now. I’ve kept notes on what happened on this day or that day to fill in the blanks in this blog. I’ve posted a few little updates on Facebook but many friends don’t loiter there. If you blink it rolls right past you. Just like life, I guess. In case… Read more →
First days home
CAREGIVING: The first few days home were generally pretty good. I guess anything was better than pneumonia in the hospital. But this is still Huntington’s and we are biding time. The first morning was my first poop clean up since the feeding tube started. Took some getting used to but it wasn’t bad. Some of the neighbors called to… Read more →
TGIF? Coming Home
HOME / June 6th: Friday morning was an anxious time. I wanted to be with Kathy, but had to be here to direct everything. A guy from Baystate Infusion called about delivering the suction machine and then someone called about the feeding pump and supplies and wanted to make sure some one was home. They called from the hospital and… Read more →
We’re sending Kathy home, today. Huh?
HOSPITAL / June 5th: In the morning, before I went to my doctor’s appointment, I got a call from the discharge case manager at Baystate. “We are trying to arrange to send Kathy home today, Thursday. ” I said,”Huh? What about the rehab place?” “No rehab. Dr. Kampe talked with Physical Therapy and they said she is good to go home.”… Read more →
Movement
HOSPITAL / June 4th & 5th: The next two days were consumed with getting the house ready and making sure Kathy was ready for her return trip home. Her feeding rate was gradually increased from 25 ml/hour to 35 ml/hr until she was doing fine with 55 ml/hr. At the same time the nurses were training me to administer her meds… Read more →