Tag: health care

Huntington’s Benefit: Web Broadcast

MUSIC: The benefit concert that Mike Orlen and my friends are giving for Kathy and our UConn Huntington’s Program will be web broadcast on a site called ConcertWindow.com. If you can’t make it to the actual concert in Amherst this Sunday, 7pm you can watch and hopefully donate online. The broadcast is “pay what you wish”. The new flyer about the show with… 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 →

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 →

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 →

A Good Day

HOSPITAL / June 3rd: Tuesday morning Trisha and Mary stayed at the house to do some “rearranging.” They cleaned, folded and vacuumed and they had some ideas of where to put things so that my caregiving might be easier. They were worried that they were disrupting my method of doing things. Not to worry. I think almost everything is where they repositioned… Read more →