CAREGIVING: Kathy and I didn’t want a feeding tube (or PEG tube) … until we changed our minds. I guess sometimes you improvise or play by ear. And that is what we did. Kathy was choking and dying in the hospital with pneumonia. The situation helped change our minds. But like I said in a previous post, feeding tubes are one of those things that a… Read more →
Tag: Hampden Massacusetts
Giving away memories
LIFE: Thursday I started going through some of Kathy’s clothes and things. I was trying to decide what to keep and what to give away. Taking care of someone with Huntington’s or any terminal disease is a long goodbye process. You need to give yourself time to breathe and time to grieve and I’d rather do it a little bit at a time. I… Read more →
Getting back to normal (sort off)
CAREGIVING: Yesterday Christina from Baystate VNA came for her weekly check on Kathy and to discharge her. Basically that means that Kathy’s condition after the hospital stay has stabilized. Her blood pressure and Oxygen levels are as good as new. I’m managing her feeding tube OK and keeping her throat free of mucus. Her diaper rash is getting better. And we have help… Read more →
Gratitude to my friends
CAREGIVING & MUSIC: I wish I could reach out and give a virtual hug to everyone who is supporting us during our time with Huntington’s Disease. We had a very very successful benefit concert in Amherst thanks to the organizational efforts of Mike and Chris Orlen. Volunteers and donors from all over the Pioneer Valley pitched in to help. I… Read more →
Venturing outside for the first time
CAREGIVING: Sometimes the biggest reward from taking care of Kathy is a smile. Just knowing that she is enjoying something makes me feel like it is worth it. Since she can no longer really speak it isn’t easy to tell. Almost always it is something simple. I wet her lips with cold water. Clean her teeth. I give her a taste of… Read more →
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 →
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 →