Once Bernie was in 24 hour care, there were still instances of his being with it in spite of the dementia. We were all moved by his participation at our granddaughter, Lianna's pre-Bat Mitzvah.
Whenever he was with Lianna, she found a way to engage him: she would involve him in an exercise routine or some games. She said she did not want to be Bat Mitzvah without Bernie's presence and it was clear that he could not travel to Baltimore. So, a few months before the actual Bat Mitzvah, we arranged with the facility to use the living room for a pre-Bat Mitzvah ceremony, borrowing a Torah, and all 18 of the immediate family gathered for the service, which she and her family conducted. Although Bernie could not recognize a single one of us, his whole demeanor including the expression on his face nevertheless indicated that he clearly knew that this was an important event. At an appropriate point in the ceremony, he spontaneously stood up and spoke about the family with emotion and clarity, as though it were the old days, BA (Before Alzheimer's).
Family was very much involved in all decisions and their support of whatever I did was helpful. It really makes a difference when a family can agree. In support group, we heard of the angst in families where there was disagreement about the care of the patient and often about related financial matters.
Fortunately, early on in support group, I had learned about getting involved at the VA. With that contact established early on in the disease, we knew that when he needed nursing care, he had a place to go.
Bernie thrived at the assisted living facility. However, after two years, his condition worsened. He became less steady on his feet and less able to engage in activities. He also caused major flooding damage when he turned on water in the laundry room and left it running. It was determined that he was now ready for more medical care. At that point, we moved him to the VA. Again, personnel at the Alzheimer's Association were most helpful, practically and emotionally, in the transition.
The personnel and the care at the VA were excellent, but it is not pleasant to visit any nursing home. Bernie maintained his pleasant appearance in spite of the dementia. He also still maintained a pleasant demeanor and the aides and nurses appreciated his expressions of appreciation although by now, it was mostly a smile or maybe a word or two. He was no longer able to walk and needed to be fed.
Robin, Sharon, Joel and Eric with Bernie