I got a letter about a hospice agency ending services for a woman whose only diagnosis was dementia . As sad as I am to hear those stories (and I get many) I am not surprised. These families have had the comprehensive services of hospice for months, even a year or so and then they are  withdrawn because the person is no longer eligible.

These discharges are happening because dementia doesn’t play by the rules for end of life. It isn’t until eating becomes a problem that the dying process really begins. 

Dementia seems to be in a category of its own. It doesn’t fit into Home Health services that focus on getting people better. It doesn’t really fit Palliative Care, although maybe it could. 

There is a huge void in our medical system that so many families living with dementia fall into. These families have a loved one too sick and require too much care without hope of getting better. Yet because they have not yet entered the dying process they do not qualify for most health care services, let alone hospice care…

Hospice, to its credit, has stepped in to fill this void, but is tied by the six month prognosis clause in the hospice medicare benefit. If they can’t report continued decline toward approaching death after 6 months of care they must discharge a person from services.

If you find yourself in the situation where your special person is being discharged from hospice due to not declining fast enough, have the hospice social worker advise and help you get into community services that are available in the area. Check national resources like AARP. Services that can help support you in the loving care you are giving.

Ask about where you can get medical equipment, assistance in physical caregiving, even volunteer support. Also check end of life doulas in your area. Talk to them, see what they can offer and how much they charge. What about support from a church? Also some places now have dementia doulas. Do an internet search to see if any are in your area.

None of the above will be as comprehensive as the services hospice has provided, but use the hospice social worker while you have her/him.

Something More about…  Hospice Services Pulled for Dementia Patient

As for a resource that will support you and your family, I suggest getting my DVD/Vimeo, NEW RULES, For End of Life Care. Have everyone in the family watch with you as it will answer many questions about what to expect when the dying process begins. It covers food, hydration, pain, narcotics, sleep, withdrawal, Grief… In 30 minutes tense shoulders soften, heads nod with understanding and tender conversations will happen.

Originally Published on https://bkbooks.com/blogs/something-to-think-about

Barbara Karnes Registered Nurse

Barbara Karnes, RN Award Winning End of Life Educator, Award Winning Nurse, NHPCO Hospice Innovator Award Winner 2018 & 2015 International Humanitarian Woman of the Year

While at the bedside of hundreds of people during the dying process, Hospice Pioneer Barbara Karnes noticed that each death was following a near identical script. Each person was going through the stages of death in almost the same manner and most families came to her with similar questions. These realizations led Barbara to sit down and write Gone From My Sight, "The Little Blue Book" that changed the hospice industry.