Mid-October to beginning of November

Yesterday, Mimi and I met with the team at the NYU rehab center on 17th St. The situation, as I already knew from my reading, is grim and we can expect things to get only worse. The choice offered was to continue treatment or just stop. In the best case, with treatment, we have one year, though exceptions arise. I elected to try another round of treatment to see if Barbara could feel better for a while. We also had to choose between bringing her home and getting her into a sub-acute rehab center. That is a tough call since she needs help with all her activities and would be at risk of injury at home, especially as things get worse, even with hired help. I am leaning toward a rehab center but it is a painful choice. Predrag has come and is helping me get ready at home if it goes that way. He and Steve Childress have installed the motion detector in the small room. It beeps in the bedroom but the frequency is high and it is not loud enough to wake me up if I am asleep. This triviality is really a decisive factor since Barbara does not wait for help. And she cannot walk unaided.

Oct. 24: Sub-acute on Hudson St.

Barbara was moved from Rusk on 17th St. on (or about) Oct. 24. to the sub-acute rehab center (VillageCare) on Hudson and 12th Sts.

The center assigned (what they call) one-on-one persons to watch her around the clock. They normally do not provide such care and it was kept up for only two days and two nights. But Barbara was still not aware enough to be cautious. She tried to get out of bed whenever she felt like it. However, she could not stand or walk without support and such actions put her in danger of falling. I had to act quickly and hired a woman and her two daughters to maintain a 24-hour watch on Barbara. They charge $15/hr for this service.

This team was found by Mimi who found it through a friend of Barbara. They have done such work for several patients, until the patients died. They prefer to work in the patient's home where their care includes light cooking and cleaning, travel to medical appointments, and administration of medicines. The mother has various licenses for these tasks. Such one-on-one treatment for a year would run into some serious expense, but I feel it would be worth it if it gives some comfort to Barbara. I cannot tell whether she likes what is going on but I do not detect any enthusiasm. I am not entirely happy with the three ladies --- they seem a bit insensitive. Since Barbara cannot speak, this is an awkward situation. I have to decide what to do when B is discharged from this rehab center, which is considered short term. Once we go home, it becomes awkward to change the arrangements.

Nov. 2: Evaluative meeting

On Nov. 2, the staff had its evaluative meeting. They had to decide whether the goals for Barbara had been met after her nine days in the center. They felt that this may have happened since she has been able to walk a bit (with some support) as a result of the physical therapy they provide. By raising their expectations of the goals, they were able to agree to another two or three weeks here in VillageCare. So I now must seek a long term solution for looking after Barbara.

In the afternoon, following my meeting with the staff in the morning, we had to go uptown to for the first MRI since the five weeks of radiation and chemotherapy. Then the oncologist will no doubt pronounce on the situation. That will be reported in the next installment.