Robin Update -- The Hospice Invasion --- 07-31-2011

Robin took another big step recently. I thought I would pass this on, although I really haven't had time to digest it myself. Let me back up a little to fill in the gap from the last Blog entry (July 4th) until now.

On July 4th, Robin had just completed a two week treatment of IV antibiotics (four times a day for two weeks!) for her Urinary Tract Infection (UTI). She did pretty well until about July 12th, when Robin started showing signs of infection again. In the evenings, she began talking strangely, and her temperature rose a bit above normal. We sent a sample to the doctor, and got results on that Friday: Another Extended-Spectrum Beta-lactamase (ESBL) producing e-coli bacteria. This was like most of Robin's earlier infections, and is resistant to most antibiotics. On July 15th (my birthday, by the way), Robin started another two week treatment of IV antibiotics. This treatment was only once a day, so it was much easier to treat Robin. Her last dose was on Thursday, July 28th, and she seems to be doing well now.

Now, on to the new development…

For the past month, Robin has been much weaker than before. She has been unable to transfer into her wheelchair, or to go to the bathroom in the bathroom, or get a shower. This development has made it much more difficult to care for her, as you might guess. A little over a week ago, a friend (or two) mentioned that hospice might be helpful. Robin said that she would look into hospice to find out what was involved and get questions answered about insurance, out-of-pocket expenses, available services, etc. Within 2 days (although it seemed like minutes), Robin was signed up and they were moving equipment into the house. They even came on Sunday, July 24th to fill out paperwork and to give Robin an exam. Hospice apparently takes over all patient comfort issues: such as, pain prescriptions and medical equipment. They will help with baths, a nurse will visit regularly, a doctor will come every few months; even a Baptist chaplain came to visit. What they don't do is anything to fight the disease or to replace Robin's primary care physician. During the last week, we needed to call for help a couple of times, and the responses were quicker than I expected. Another couple of times, an assistant came and helped Connie (Robin's attendant) give Robin a bath and change the bed linens.

Like I said, I still have not yet digested this big change. Certainly, the extra help is appreciated, but the word "Hospice" has a feel of finality to it for which I was not ready. I have been assured that they are not just for people for whom death is imminent, but that's the feeling that I have. It reminds me of the sacrament of "Extreme Unction" (also known as "Last Rites") in the Catholic Church. It sounds like it's so final. The Church changed the name to "Sacrament of the Sick," and that doesn't seem so bad. Maybe Hospice should be renamed something like, "Medical Comfort Support," or something along those lines. I guess "hospice" is easier to say and already well-defined, so a name change isn't in the cards.

Robin's vision is still terrible. Her right eye is totally blind, and her vision with the left is very poor. She still cannot read the text on the television. In spite of all the problems and difficulties, Robin still has good spirits and she can still smile. I'm not sure how or why, sometimes, but she still has that memorable smile.

Speaking of how memorable Robin is, I had an interesting experience last week. I took a sports coat to the dry cleaners. This was probably my fourth visit to this shop in the last eight years, and the last visit was probably three years ago to pick up some stuff for Robin. When she was still working, Robin was a regular customer at this dry cleaner store. As the little Vietnamese lady took my name and address, she asked, "Where's you wife? I haven't seen her in a long time." I was dumbfounded. I never thought she would associate me with Robin, since I don't think we were ever there together. And I couldn't believe she remembered Robin after so many years. I asked her how she could remember Robin after so long, and she said, "She has cats, and I told her to keep the cats off of her clothes!" After I explained about Robin's illness, she said she was so sorry to hear about the cancer, and she said they would pray for her.

Well, I must close for now. Please keep praying for Robin and for everyone affected by Cancer. We continue to hear of people who have Cancer, newly diagnosed or recurring. We pray for them and for their families. This is a brutal disease, and some of the treatments are just as brutal. Please join us in prayer. And know that we appreciate your thoughts and prayers, your cards and letters, and your phone calls and visits.

Thank You!

Love,

                  --- Larry, Robin, & John