Labyrinth, Ideas, and Wanderings

Learning as we go…

This past year has been quite a trial. As my mother’s health declined and her dementia progressed, my world became much less predictable. Already stressed by work and guiding our young adult daughters through their college years with the fog of depression, the slow but fast march of looming decisions crashed on us in November. Mom fell the night before Thanksgiving, and was admitted to the hospital with pneumonia. She had a major emotional break in the hospital, and the battle was on. She fought against every single effort to improve her situation. When told she was NOT going home, she became ill, literally heartsick. The stages of grief apply in dementia as well as in death. We went from anger to sadness and back again. Rehab in a skilled nursing facility failed to build up her physical strength as her body and mind slid into permanent rebellion. Christmas passed with Mom refusing to eat, still throwing up and unable to keep anything down. My husband and two daughters cooked dinner at home, and visited Mom in her room that evening. Holidays the last 3 years have been spent with Mom in the hospital or ill at home. I have despaired of ever having a “normal” Christmas again.

The week after Christmas Mom continued to throw up. I finally called the nursing director to complain because the nurses did not seem to be proactive in dealing with it. Someone had called for an anti nausea medicine, but they were not giving it until after she had an episode, because they were waiting for her to ask for it.  With no short term memory, Mom could not remember how to use the call light most of the time, let alone request medicine. The next two days after the discussion with the director led to meeting with the doctor (finally), only to have her say something about it being “emotionally related”… REALLY?!?  Yes, Mom got upset at the discharge planning meeting that occurred the week before Christmas. But she didn’t start throwing up until 3-4 days after the meeting, and discharge to assisted living was planned for two weeks from the meeting date. She had actually reconciled herself after talking to her best friend and was pretty satisfied with where I had chosen to send her, as she had a friend already living there.

So, the fight was on with this Doc. I demanded X-rays, testing her blood sugar (which had been high thanks to steroid therapy), basic care that most physicians or nurses should be well versed in. Doc looked rather startled when I didn’t just meekly agree with her. (I am a nurse, by the way. And this physician and I have spoken many times on the phone due to the nature of my job.) She ordered an X-ray series for the next day, which I dutifully went along with, but the road trip was a disaster. Mom was too frail for me to handle by myself, I discovered when we arrived at the hospital. Our norm of me being her caregiver had changed and we both knew it. I was also thinking assisted living was not going to be a good option with her rapidly declining state.

Upon returning to the rehab facility after  this disastrous escapade, I asked the nurse about IV fluids. She acted like that was a novel idea. They finally found someone to start an IV, and gave 1 small bag of fluid very slowly over 24 hours. When I questioned the slow rate, I was told “you cannot bolus a heart failure patient, you will fluid overload them.” They had actually started an antibiotic also. Mom’s vitals were ok, so I went home that evening, still with a heavy heart.

When I returned the next morning, Mom was very disoriented and even weaker. It took two of the nurse aides to get her up to the bathroom because she couldn’t even stand. I demanded that they call an ambulance and sent her to the hospital. The nurse was like “well, I need to call Dr so and so.” I told her to get on it or I was calling 911 myself. She went and made the phone call to the doctor, and came back to ask “so are you taking her yourself or do you want me to call 911?”

I just looked at her and said “911 of course”, thinking “REALLLLLY?!?! Were you NOT listening????” I packed all of the stuff in Mom’s room by myself, called immediate family to say we were headed back to the hospital, and invoked my FMLA for the next few days I was to be working. I seriously thought we would lose Mom.

To be continued…