Our family member with dementia is now in a hospice program. She continues to live in her apartment and to be helped by the caregivers that she is used to having as a part of her daily life. Mother was clear that she did not want to go back to the hospital for any reason (October 25, 1009 posting), and her greatest fear before the dementia took hold was that she might be attached to machines in a hospital. This hospice overview provides more information.
Because of her dementia, Mother has gradually lost the ability to do all but the most basic activities, she and needs constant supervision. She depends on others for every activity in her daily life — from getting dressed to eating to moving about, and even with support many of the activities are getting harder and harder. Just about the only thing that mother can do for herself is move her spoon from the plate to her mouth, though someone needs to put the food on the spoon, and sometimes the spoon takes a circuitous route and needs a helpful hand before it reaches her mouth. Thus we needed to find a way to focus on her end-of-life needs because we knew that her type of dementia does not miraculously change course.
After the most recent visit to the hospital emergency room in October we investigated hospice programs as a possibility. Mother entered the program. Just the other day Jane Brody wrote this article in the New York Times, talking about end-of-life hospice care.
The first thing that hospice professionals did was to take her off many of her daily medications — up to about thirteen. They kept her on meds that help for her (three of them), but took her off of the meds that fix or correct a problem (because they can’t fix anything). Once off of these medications mother seemed much more alert. She does not sleep as much, and she does not seem to get as dizzy. She is much happier.
The second thing that happened was that the nurses from hospice put notices in her apartment, in her chart, and with the assisted living managers, asking everyone to call hospice if there is an incident. (Hospice has a 24 hour number) rather than an ambulance and traveling to the hospital emergency room.
A nurse visits regularly as does a health aid who can help with bathing. A social worker visits to be sure she does not have any other issues.
When mother complained of pain, the nurse was in her apartment within an hour, figuring out where the pain was, discovering the cause, and solving the problem.
This has made our interaction with mother much more relaxed and we have far less anxiety. We are not worrying every time the phone rings that she may be on her way to the emergency room, and when we visit, we worry about fewer issues because there are others who are managing those issues. Thus our time is conversational and enjoyable. Several times a week we are able to share a meal with mother in the dining room and we help her get ready for bed.
There is plenty of information about hospice programs at the National Hospice and Palliative Care Organization.