AboutMargot RN BScN CGN Expertise I nursed my own Mother and Grandmother at home when they were dying so I have personal experience with the emotions involved. I have also spent the last 15+ years as a Registered Nurse caring for The Elderly and Terminally Ill and it has brought me great satisfaction. I am willing to answer any questions I can.
Experience
Past/Present clients Hundreds of Long Term Care Residents as well as hundreds of Cleitns and families in the community (including my Mother and Grandmother).
Question Dear Margot,
I am the caregiver for my mother who has had alzheimer's disease for at least 12 years. She is on Palliative Care with Home Health. The nurses only visit every two weeks. They are telling me she does not need to be in Hospice yet. I disagree since the only function she still has is chewing and swallowing. I do everything else for her, including removal of bowels manually for the last month. I spoke with her doctor asking if loss of bowel function is a symptom of the disease. He said he's never heard of it and expects with stool softeners and other laxitives that bowel movements on her own will return. I just read the fantastic piece on this site called Alzheimer's and Dying. My mother has many of the symptoms written in that article: Seeing and talking to deceased relatives, urine decrease (she has a catheter), irregular breathing, withdrawal, and more. She also sleeps most of the day, and is only up in her wheelchair 3 hours in the morning and 3 hours in the evening for meals. I have two questions: 1. Do you believe she is ready for Hospice? 2. When a person begins having these symptoms, how near is death? Thank you for your expertise.
Answer Hi Lisa and thanks for writing,
I am sorry but I really cannot guess how long your mother may last in her current condition - I have seen too many patients linger for years despite end stage Alzheimer's and no quality of life - they sometimes live for years much like new born babies requiring total care, sometimes including manual bowel extraction. I have also seen other patients slip away quite quickly with no obvious cause of death, they just decline until they quietly pass.
I cannot say your Mother is ready for hospice unless there are signs her system is shutting down - has he condition suddenly deteriorated in the past few weeks, or has it been more of a gradual decline over the years. I would watch for signs of deteriorated health like chest congestion (remember they call pneumonia “the old man’s best friend” as it’s a relatively peaceful way to pass on), urinary tract infection (dark or smelly urine) or increased sedation and decreased appetite. Also remember that although we always want to provide adequate nutrition and fluids, we do not want to force feed anyone – don’t feel it’s a crime to allow someone to quietly slip away as they eat less and grow weaker, it’s only a crime if we intentionally withhold food or fluids. Always watch for signs of discomfort and make sure she is given adequate analgesics or even narcotics if she appears to be in pain (facial grimacing or moaning with movement);l you might want to give some Tylenol 30 minutes before each time you get her up during the day.
I know it’s a lot of work and I am proud of you for caring for your dear Mother so these many difficult years, but you will never regret it. As much as I hated to see my own mother be ill, I would relive the 18 months I spent nursing her again and again.
Take care and please feel free to write again anytime if you have more questions or concerns,
