Cunningham-Ramos AML & Stroke after TBI Journey

May 1, 2023 Waiting for breakfast to be served

Since Kim came home under hospice on November 1, 2022 (over 6 months ago), I’ve come across various research papers that discuss the length of time patients in Hospice remain before they die. The vast majority of hospice patients die within a week of admission because these patients tend to enter hospice when they are very ill and already near death. According to the National Institutes of Health, “about 90% of patients die within the six-month timeframe after entering hospice. If a patient has been in hospice for six months but a doctor believes they are unlikely to live another six months, they may renew their stay in hospice. However, on rare occasions, patients go into remission or improve enough to leave hospice and return home or to an assisted living facility. ”

When the Hospice nurses come to see Kim they keep asking me: “Is he eating less? Sleeping more?” Well, no, he wants to eat all the time and he is not sleeping as much at all! He has become more alert and, except for his loss of memory from the time he suffered the stroke back on August 9, 2022, he looks and sounds like the old Kim after his last TBI 10 years ago.

The question is: should I take him out of Hospice? Because AML is a terminal illness that can show up anytime without warning and that could take his life in a matter of days or weeks, Hospice continues to approve continuing Hospice care.

I have considered taking him out of Hospice but have come to the conclusion that he is doing so well that intervention would only inject suffering into his life. He enjoys his “suite’ on the lower level of our home, all the attention he gets, and the food and care he receives. He is on very few medications, mainly vitamins, and yet he is doing remarkably well. He is generally happy and often, when he becomes very aware of his situation, he expresses his deep gratitude to me for all I have done for him over the years. So, for now, I carry on with life and continue to make his life the best it can be.

Tomorrow, I am driving Kim to the Finger Lakes, NY where we have been visiting over the years. We plan to stay 2 weeks, the time allowed by Hospice. He really likes being in a car though this would be the longest trip (about 6.5 hours) he would take since the summer of 2020. Wish us well :=)