Persevering

We returned from MSKCC to our subacute rehab center on Hudson St. on Dec. 2. (I am getting shaky on dates and other such details, but I have the time intervals more or less straight). For various reasons, some of which you may have read already in earlier bulletins, we decided to try getting our caregivers from an agency. We consulted two people familiar with such things and they suggested the same agency --- Partners in Care. So we called them and they provided round the clock coverage.

The rule in these situations is that a caregiver does not leave the patient until a replacement arrives. In the first three days of our use of the agency, their caregivers were quite late, one by five hours. This left the one that was waiting in a terrible state. I was none too calm about it either. Then, on Thursday, Dec. 9, I got a phone call at 6:15am from the rehab center. The caller hemmed and hawed for a while, worrying me no end, till he finally confessed that Barbara had gotten out of bed and fallen at 2:15am. It was not clear why he waited so long to notify me but this was not the moment to discuss such issues. I got myself to Hudson St. and found Barbara asleep and seemingly OK except for some bruises on her arms.

This was quite painful especially as the chief reason for engaging the agency was to prevent just such incidents. According to some of the nurses' aides, the watcher of that evening was observed napping behind a curtain. This called for some action and I spoke to various people including the workers in the rehab center. We got some names and Mimi tried to put together a cohort of watchers but it proved impossible to mesh their schedules to achieve full time coverage, especially given the need to hurry. We did finally manage to hire a consortium of caregivers that seems more reliable than some of the agency people. None of these arrangements is perfect but it seems as if the present situation is workable, in large part because of Barbara's bravery and cooperative spirit. She has been amazing throughout this whole ordeal which has now gone on for over seven months.

In the past few days, from about the 9th of December, Barbara has been conversing with visitors, carrying on with her therapies (physical and speech) and gamely battling the intense fatigue caused by her illness and (I gather) her medication. It grieves me greatly to leave her side at night but I feel that the present arrangement is still safer for her than living at home in her present impulsive mode. And she has medical care at all times here at the rehab center.

There were also a few small disappointments in the past week besides the fall, which upset me far more than it upset Barbara. Ulla was going to come down from Cambridge to New Haven on Wednesday Dec. 9 and join up there with Kim. They were planning to come into town together for lunch with Barbara and Mimi. But Willem fell quite ill and so that meeting has been postponed until Willem is in better shape.

Then, on the evening of Dec. 10, Mimi called to report that Barbara's coat was missing. This was just the right coat for the current weather and I was planning on using it for our trip uptown on Tuesday when we are to see Dr. Omuro. I will skip the details of that detective story but report only that the coat was returned to the room on the next day, Saturday. This allowed me to take Barbara out for a wheel chair ride. We bought a berry scone in a nearby famers' market and ate it in the sunshine in Abingdon Square, a pleasant mini-park. When I then asked Barbara if she wanted a cappuccino, she said yes and off we went to the Minerva coffee shop on 4th St. I made a bad choice there because there was no wheel chair access. But after all this time in these circumstances, I know my wheel chairs and got the thing up the (approximately) five inch high step. Imagine my disappointment when Barbara did not like the cappuccino at all. (She has not had real coffee for several months and may have lost the taste for it.) Still, it was a very enjoyable outing.

The next day, Sunday, Judy and Mimi were to take Barbara to a bistro for lunch but they were rained out. So they settled for nice visits separately in Barbara's room. Mimi brought lox and bagels but Barbara preferred the Sunday turkey dinner provided by the Center. Her taste buds are completely other than of old owing to various factors. But Mimi and I enjoyed the brunch Mimi had provided. (Yes, I showed up in time for that.)

Now it is Monday evening (Dec. 13). Barbara has had one of her sleepier days and she has slept through visits of Steve C. (who brought me a sushi lunch) and Peter K. who told me how to prepare a reed for use with an oboe. Tomorrow morning we'll set off at 7:45 to go see Oncologist Omuro and then return to the new quarters at 214 Houston St. --- assuming that the move will have been completed on schedule. I believe that our new room number will be 218 but there is no telling for sure till we are installed.