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 These families have had the comprehensive services of hospice for months, even a year or so and then they are withdrawn because the person is no longer eligible.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.
7 comments
Barbara, I am too familiar with the pulling of hospice for dementia patients. My wife was diagnosed with early onset Alzheimer’s when she was 53. She died when she was 60. The rollercoaster ride through the medical professions and hospice care during those years was a complication neither I nor my daughters needed. Fortunately, the agency we were using worked diligently with us to fight to keep my wife under hospice for the last 18 months of her life. The necessity of having to work with the agency and doctors to fight for this care every few months seemed unnecessarily cruel to the family. I hope that someday the politicians who create the laws we navigate will provide relief to so many families who need it.
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BK Books replied:
Dan, I hear of similar to your Hospice experience way too frequently. We need health and respite care specific to dementia. Hospice is trying to fill a gap but it’s like trying to put a square peg in a round hole. It provides needed services but doesn’t really fit its designed purpose. Blessings to you. Barbara
Barbara,
Thank you once again for your insight. As a hospice worker, I get very discouraged when told we have to discharge someone with dementia because they “aren’t declining.” I have literally seen patients who were doing fairly well one week and took a drastic turn the next. No one knows when we’re going to die, but we all are. Six months is a benchmark that should be reconsidered-at least where dementia is concerned. It doesn’t follow any rules.
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BK Books replied:
Hi Cathy, you are so right, dementia doesn’t play by the same “rules” of dying that most other diseases do. It really isn’t until food becomes an issue that you can predict a timeline——— and even then it is iffy. Thank you for sharing and blessings to you in the work you are doing. Barbara
My husband with dementia was denied Palliative care. Shortly thereafter, he was put on hospice after two hospitalizations and died less than 4 weeks later. Hospice changed their visit schedule from 2 times a week after the second week because “he could live a long time in the condition he was.”
Side Note: that particular hospice should have their license pulled….big corporation with assisted living and memory care homes nationwide.
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BK Books replied:
Doreen, I hope you contacted Medicare.gov with a complaint about the quality of care you received from the hospice. If we don’t say something when service is poor the actions will continue. Blessings! Barbara
Barbara, I appreciate your advice to Kimberly. My mother who had dementia was evaluated by 3 different hospice organizations and they were vastly different. We found one that would accept her as a client but they weren’t the best of the options. The third one also appropriately accepted her and their caring services were extraordinary and made all the differences in her final months. She did live longer than six months but her condition declined predictably over the months.
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BK Books replied:
Cheryl, thank you for sharing your experience. It shows to “shop” hospices just like we “shop” for other things. Blessings! Barbara
I can’t tell you how the timing of this article applies to my mom and her dementia decline. I just had Hospice do an evaluation of my mom who’s in a SNF. Because she really doesn’t have any other underlying health issues she wasn’t accepted for Hospice. As a former Hospice volunteer this was quite hurtful. There are patients who stay on Hospice longer(thankfully) but my mom can’t be considered. I truly feel in my heart she doesn’t have much time left. I simply wanted her to receive the care and compassion that others receive. Just doesn’t seem fair. None of us know our exact time to die, her heart could stop beating tomorrow. I think when they get to this stage changes need to be made.
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BK Books replied:
Kimberly, I’m so sorry your mother wasn’t accepted onto the hospice benefit. You might try a different hospice in your area. Sometimes professionals view situations differently. Worth a try. My blessings to you and your mom. Barbara
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