When You Realize Your Loved One Could Be On Their Last Rope...
Sometimes you need to get out of the forest to be able to identify the tree.
I know that sounds like I’ve corrupted the old saying, but I’ve found this other saying to be true in relation to the progression of Alzheimer’s disease. Since the disease often doesn’t cause a loved one to have a straight downhill spiral, you’re not really sure what stage your loved one is in. One day, they don’t know who you are; the next day, they identify you by name as you walk in the door.
During the final week of Mom’s life, we weren’t sure what was going on. We knew that she was still alert after being released from the hospital the previous week. By that Sunday, she was visibly weak, leaning sideways in her wheelchair and responding to visitors in what appeared to be a mental haze. By Tuesday, Mom was so weak that she remained in bed most of the day, but she still was relatively alert. Although she didn’t move her head to acknowledge me when I stood by her bedside, she did focus on me if I sat so that I was in her line of vision. And she tried to speak to me, albeit incoherently. I didn't panic at this point, because I had seen Mom go through something similar about a year before. I figured it might just be a matter of time before Mom gathered her strength and snapped out of the haze mentally.
During that last week, the nursing home staff – especially the aide who was assigned to Mom -- stopped by to give me the latest status report. Although my gut instinct was that they sensed that Mom had taken a downturn, they held out hope that she would rebound. The aides’ reports indicated that they got Mom up for breakfast and that she was eating at that meal; however, after the meal was over, the aides would take Mom back to her room and lay her down. And Mom wouldn’t want to eat at lunch or dinner.
By Wednesday afternoon, I found that Mom was no longer alert, although her eyes remained open. I described her condition to someone as “looking through me and not at me.” Later that day, one of the nurse’s broached the subject of the family’s desires concerning a feeding tube, if it became necessary. Dad responded that we wouldn’t go that route, because Mom would not have wanted it. Still, we knew that Mom had eaten that morning and had responded a little bit verbally when she was up. So we still clung to hope.
I had a business trip on Thursday that took me away for the day. During my morning commute, I had the opportunity to think about what was happening with Mom, but nothing rang a bell. But after my mind had focused on the intense business meeting that consumed much of the day, I finally had the mental breakthrough that helped me to recognize “the tree” that I hadn’t seen while I was focusing on the forest that made up Mom’s day-to-day status.
“The tree,” in this case, was the stare. I had seen it before, that looking “through me and not at me.” That stare had belonged to Laura, another person who had dementia. Laura had entered the nursing home’s secure unit shortly after Mom did and appeared to be at the same stage that Mom was when she entered the nursing home. A sweet lady, Laura was a calming influence on my mom and became one of her friends. Laura also adored me, always wanting to hold my hand and talk when I came to visit Mom.
After the nursing home closed the secure unit and moved all the residents who had dementia into another section, I lost track of Laura since she was placed in another wing. Then one day as the residents were congregating around the nurse’s station prior to dinner, I saw Laura. I went up to say hello, and was surprised at what I found. She was in a wheelchair at this point, propped up in a sitting position by a thick foam cushion that fit over the front of the wheelchair to keep her upright. When I got down to her eye-level, I experienced a stare where she was “looking through me and not at me” – the same stare that I was now seeing from my mother. Shortly after that encounter, I found out that Laura had died.
As I got ready to head for home after my business meeting, I quickly called my father to tell him about my suspicions. I also told him I was going to go on and alert my brother. By the next morning, my brother had made the decision to fly down to see Mom and would be arriving late Friday night.
Even though it would have been nice to have spent that Thursday – less than 48 hours before Mom died – at Mom’s bedside, I am thankful that I had to go to that business meeting. It gave me time (and enough distance) to get a perspective by tapping into my gut instincts based on what I’d seen previously with Laura. And it resulted in our family being together immediately after Mom died in order to begin to grieve her loss.