CAREGIVING: This week a bunch of changes occur. First of all I’ve decided to change Kathy’s insurance from Health New England as her Medicare Advantage Plan to a plan called NaviCare. It is one of the state Senior Care Options (SCO) plans authorized by Medicare and the state. I had written before about wanting to move her into a different SCO called… Read more →
Update: Club meds
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… Read more →
Feeding Tube: opposing views
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 →
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 →
The Feeding Tube
CAREGIVING: I’ve wanted to do a post about stomach tube feeding for quite a while. It is one of those topics that some of us have strong opinions about: pro and con. Most studies say that tube feeding does not prolong life or eliminate the possibility of aspiration pneumonia. And eating food is one of those activities that we all enjoy. So this post… 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 →