For the first four or five years, Minnie was an active participant in all these events. Drawing on her background as a community organizer, she attended meetings of the Resident Council, started conversations, kept track of the schedule of events, got herself to activities without reminding, knew where she was "geographically" in the building, easily found her way to her room, socialized with other residents, made phone calls, asked questions of me and staff, and otherwise made her presence felt. This is no longer true. At first, too, Minnie was a frequent user of the well-stocked library at the Residence-but failing eyesight and cognition soon prevented her from reading-and she lost the strength in her hands to hold a book.
As she declined, Minnie was fortunate to be accepted into a new day care program for the memory impaired and, later, into a dedicated residential program for people with Alzheimer's disease or other dementias. I hoped she could eventually end her days in the comfort of these familiar and supportive surroundings. In fact, every effort was made by staff and management to help my mother to age in place-and for this I am truly grateful. Minnie, however, eventually lost the ability to take advantage of the program on the Memory Unit. She could sometimes respond to a direct question or stimulant, but she could no longer initiate conversation or action, or participate in the structured Unit activities.
It soon became obvious that Minnie's dementia had reached the point where the Memory Unit could not help her. Clearly, someone on the waiting list, less severely impaired than Minnie, would be able to utilize these services more effectively. So I did what she begged me ten years previously never to do. I "put her" in a nursing home.
I won't go into the pain and horror of shopping for, evaluating, choosing, and paying for a nursing home. There are many good books already available that can help a family with that task (e.g. "Choosing A Nursing Home" by Seth B. Goldsmith, Prentice Hall Press). I'll only say that there are few fabulous nursing homes out there. Again, we got lucky and found a facility that, on balance, provides reasonably acceptable care. So she was admitted.
At the same time, a decision was made to discharge her from hospice services. While she was becoming increasingly feeble, the doctor could no longer certify that she was hospice qualified (i.e. within six months of death). She was still very much alive.
How did Minnie react to her move to the dreaded nursing home?
"Ma," I asked, the day after the move. "How do you like your new home?"
She looked around, then at me, and smiled. "What new home?" she asked.
Rather than answer directly, I asked another loaded question about her new living arrangement, something I felt guilty about. She had gone from an almost private room to the center bed of a three bed room, the only dividers being thin, hospital type curtains-and one of her roommates moaned and groaned continuously far into the night.
"Ma," I asked. "Are you okay with your new room?"
"What new room?"
I ignored that too and asked, "Are you being annoyed or kept awake by your roommate's noises?"
Conveniently, the roommate let out a loud shriek at that moment. If Minnie heard it, you'd never know from her demeanor. She looked at me with a bewildered stare and quietly shook her head. A new phase had begun
This is an extract from his book entitled "Dementia Diary". You can contact Bob Tell email: email@example.com