Mar 29, 2009 - 8:24 pm
Make as many appointments as you can. I didn't miss an appt. where we saw his radiation doctor nor did I miss a chemo visit. I literally was the tattle tale - of course he didn't like it :-) Ask your own questions and if necessary write things down in between visits to discuss. Sign up for medic alert! Keep track of meds and treatments. I set up an excel spreadsheet from diagnosis to last visit. I updated it with every major change and kept copies with me. This was especially handy when we had to go to the hospital. I just gave them a copy and they attached to his admission sheet. I also kept his meds listed at the top and changed as needed. My daytimer literally became his - I kept his appts., doctor cards, lists - everything needed in one place. When he became a larengectomee patient I made copies of the "emergency resuscitation procedures for neck breather" and visited the fire stations closest to us. I spoke to the emt's and gave the info to them. The response was that they got training on neck breathers but in all honesty had never had to utilize the training. They seemed to appreciate the "refresher". Contact your 911 central control. I was able to e-mail our information. I gave them our address and they "flagged" our account in the event that a call came to dispatch and the responders would know he was a neck breather. Our system set up to do a "dry run" beforehand. I also found those clingy things that stick to windows that said a complete neck breather is here. I had one on our door from the carport, our front door, the driver side of his truck and the passenger side of my SUV - kinda funny watching people trying to read the sign that pulled up beside us, you knew they were clueless. Understand that you are not the enemy. My husband would give me or do anything in the world he could. During the last 6 months of his life I was the one that he lashed out to and at. I knew that the person lashing out was doing so because of the medication - he was on morphine and roxicet. Expect to lose friends and know who you can depend on. Seriously. Friends [I thought] never came around but were able to come to the funeral. Most of which I have not heard from since the funeral. I know it was because they didn't know what to say or do. The worst thing was that he would really would have liked the company. I would be more than happy to share other things we did that worked for us. Don't hesitate to contact me. Best wishes for everyone.