March 5, 2010
This week has actually been worse than I thought it would be. I am beyond exhausted. Suffice it to say that I put my bra on over my pajama top yesterday. I’ve lost six pounds since this began. Mom becomes very groggy and unfocused on the pain meds. It is hellish to try to do a transfer with her for at least six or seven hours after a dose of medication. She can’t figure out how to move her feet, answer a simple question, or eat. Unfortunately this is also PMS week for Lauren. She is having major mood swings and is very irritable. That means that she is very noisy and vocal, doesn’t sleep well. I’m averaging about four hours of sleep a night. I’m a little dizzy with a slight buzzing in my head.
My family has been helping as much as possible this week. My sister-in-law and nieces have been coming in to help me shower and dress Mom as well as put her to bed. But the hours between are filled with bathroom trips, coaxing nourishment, and attempts to provide some stimulation to take her mind off of the pain. The doctor had the Visiting Nurse Association contact us and after some discussion they recommended hospice to meet Mom’s needs. The hospice representative spent three hours with us, a lovely woman who was respectful of my father’s feelings and empathetic with our situation. She said they could provide us with some equipment, twice weekly nurse visits to ensure the best formula for pain management and two hours, five days a week of a home health aide. Not nearly enough to meet our needs, but it was something.
Twenty-four hours later I realized that the service system for seniors functions much like the service system for the developmentally disabled – erratically and insufficiently. The clinical supervisor called to tell me that Mom was not eligible for hospice services. She never came right out and said it, but apparently she isn’t sick enough. An eighty-nine year old woman who requires total care and is in excruciating pain, I guess, doesn’t fit the parameters for hospice. Shouldn’t the woman we spent three hours with have known this? The supervisor said that they would stick with us for a couple of weeks and then probably determine that they could no longer serve Mom. The home health aide will come, but the two hours includes her travel time – they serve two large counties. They can’t guarantee what time she can come. Won’t it be helpful if she is here for all of fifteen minutes watching Mom sleep?
Tonight will probably be another sleepless night. My brother and I are going to talk to my father tomorrow about what to do next. It will be a very difficult conversation. He still thinks they will be returning to Florida – avoidance, stubbornness, delusion? I don’t know. I hope Lauren is feeling better by tomorrow; I don’t need the added stress of knowing I can do as little to address her discomfort as I seem to be able to help my mother’s.