CAREGIVING: We are expecting a snow storm for Thanksgiving. I’ve given emergency planning a lot of thought lately. I thought it might be useful to think out loud about it: What to do with a bed-bound Huntington’s patient during an emergency. Getting Advice The biggest worry I have during the winter is a power outage. Without power there will be no heat, no water… Read more →
Tag: Baystate Medical Center
The Stairlift has left the building
CAREGIVING: This is a story about how you think you have a plan, but a much simpler one is “stairing” you in the face. I have been paranoid about the combination of caregiving and winter in this house. Now that Kathy is bed-bound with Huntington’s Disease, keeping her warm and safe is another thing to worry about. Just as a refresher, our house… 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 →
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 →