Today was Mom's first Care Plan Review under hospice care. I participated from my office via conference call. To sum up what was covered:
Mom’s current weight is 147 pounds, down 9 pounds in the last quarter. She has trouble chewing, so they are changing to all ground/pureed meats. They are using liquid supplements between meals which Mom takes readily, but sometimes has trouble swallowing. Her leg muscles are contracting so are curling up, in turn causing heel pressure sores. They are not erupted, and she wears pressure boots in bed to minimize the problem. Pain is better, but still significant. Therefore, they are stopping the patches and changing to liquid Methadone, as well as twice daily Morphine. Within two weeks they anticipate her pain level to drop significantly. Behavior has already modified somewhat with pain control, i.e., less hollering. Volunteer companions and staff observe that Mom’s eyes convey recognition and cognizance, and she will attempt verbal communication with groans/moans, but no talking. They agree with me that talking with her is a definite comfort, and she likely hears everything and understands a lot. I asked for email addresses for Hospice team members and team leader took mine and will get them to me later today.The last time I visited Mom (last week with Daniel) Daniel and I both got responses from Mom with her eyes and verbally, but only when I leaned over her, talked loud, and asked direct questions – mostly moaning a positive or negative but no words. The time before that with Betty, Betty and I heard her talk a little. No one at Eventide or Hospice has heard her talk in a month, they said.
While Daniel stepped out of the room for a moment last week, I leaned over Mom and told her how much I loved her, admired her, etc. She looked deep into my eyes, and I looked back, and it was such an intense, incredible moment. I leaned over and kissed her, and held her hand…then Daniel came in and I acted like nothing happened – it was something I wished to keep for myself and not share, at least not then.
While this article refers to President Reagan, it’s actually a general guide to anyone with advanced dementiaMom’s condition, and offers some of the most specific information on what to expect, including life expectancy.
The information below is an extract of an article documenting a recent study of patients with advanced dementia...
BACKGROUND: Nursing homes are important providers of end-of-life care to persons with advanced dementia.Mom is receiving wonderful care considering what many people receive. It is a blessing to have a well-established and well-respected hospice near Mom that can offer such compassionate care at this difficult time in her life.
METHODS: We used data from the Minimum Data Set (June 1, 1994, to December 31, 1997) to identify persons 65 years and older who died with advanced dementia (n = 1609) and terminal cancer (n = 883) within 1 year of admission to any New York State nursing home. Variables from the Minimum Data Set assessment completed within 120 days of death were used to describe and compare the end-of-life experiences of these 2 groups.
RESULTS: At nursing home admission, only 1.1% of residents with advanced dementia were perceived to have a life expectancy of less than 6 months; however, 71.0% died within that period. Before death, 55.1% of demented residents had a do-not-resuscitate order, and 1.4% had a do-not-hospitalize order. Nonpalliative interventions were common among residents dying with advanced dementia: tube feeding, 25.0%; laboratory tests, 49.2%; restraints, 11.2%; and intravenous therapy, 10.1%. Residents with dementia were less likely than those with cancer to have directives limiting care but were more likely to experience burdensome interventions: do-not-resuscitate order (adjusted odds ratio [OR], 0.12; 95% confidence interval [CI], 0.09-0.16), do-not-hospitalize order (adjusted OR, 0.33; 95% CI, 0.16-0.66), tube feeding (adjusted OR, 2.21; 95% CI, 1.51-3.23), laboratory tests (adjusted OR, 2.53; 95% CI, 2.01-3.18), and restraints (adjusted OR, 1.79; 95% CI, 1.23-2.61). Distressing conditions common in advanced dementia included pressure ulcers (14.7%), constipation (13.7%), pain (11.5%), and shortness of breath (8.2%).
CONCLUSIONS: Nursing home residents dying with advanced dementia are not perceived as having a terminal condition, and most do not receive optimal palliative care. Management and educational strategies are needed to improve end-of-life care in advanced dementia.