On Hospice, the initial benefit period is 90 days, then
after that benefit periods are only 60 days long. If you are caring for your loved one at home, you are qualified for 5 days of respite in each benefit period. I have always selected a Hospice provider who has their
own inpatient units, and that's the only place I would allow them to
take our Gary for his respite stays. No outside facilities were allowed because of repeated bad care experiences.
To be
qualified for Hospice, you must have a life expectancy of less than 6 months, and
must continue to show decline each benefit period to be recertified on
Hospice. If you stabilize, their service will be discontinued, no matter
that you sill have a terminal disease. You must have nearly all 7
symptoms of end-stage dementia on the FAST scale to be Hospice qualified
with dementia as your only terminal diagnosis. Multiple diagnoses can
be used, but the primary diagnosis dictates which medications Hospice
will pay for and which will be excluded. The horror is if services
start, then you stabilize at some point in your decline and they kick
you off, still terminal, but now stable, which makes you ineligible for
Hospice services. When you are stable, you are also not qualified for
Home Health, because in that situation, you must be improving to receive
those benefits. Many dementia patients and carers get caught in that
awful limbo of stability with no support, which means no in-home skilled
care and no respite unless all paid for out-of-pocket despite having a
terminal illness and needing a medical transport to get to appointments.
Our system desperately needs an overhaul!! LBD is SUCH a difficult
primary Hospice diagnosis because of the cognitive and behavioral
fluctuations.
We
were kicked off Hospice last July and had to fight for rehab so Gary
would be showing improvement for us to have Home Health help at home. I
was able to advocate enough to keep it going until he had to be
hospitalized in November for a sudden bout of infections that started at
Adult Day Care. He qualified for Hospice again starting in December,
and we kept noting and pointing out all signs of decline to keep
Hospice involved in his care. Hospice would miss many signs if we don't
advocate for him. It is exhausting. You leave Hospice and the basic
needs, which would keep your loved one maintaining a comfortable
stability are kept out of your reach unless you pay on your own
because Medicare has stacked the red tape so high to get them. The fight
for a hospital bed with an air mattress for bed sore prevention is
monumental and nearly insurmountable without multiple letters of
explanation from doctors and therapists. An oxygen concentrator requires
a sustained reading below 88% blood oxygen for several minutes within a
24 hour period even if you had a lifetime certification for it before
Hospice admission. Medicare considers you to be "recovered' if you are kicked
off Hospice services, so you must scratch your way back to get back items you had proven
were needed in the past! Beyond ridiculous!!
The attitude of Hospice when kicking you off is, "This
is a good thing because they are doing better!" No, it's hell for the
carer and patient because you have to fight so hard for basic needs and
to keep them out of the hospitals that will kill them with their
medication adjustments upon admission, and they aren't ever getting
"better"! It is all decline, just sometimes imperceptible to untrained
and inexperienced medical personnel who don't listen to advocates. This
has been the most stressful, exhausting experience of my life and I have
become an impatient, and often sarcastic, advocate because of all the
continuous battles I've been forced to engage in. Still ongoing even
though we're end-stage. Common sense and simple care logic are NOT
empathetic medical traits, they have to be taught over and over again,
in every single setting, and with every new medical encounter. For
example, urine retention is ALWAYS met with a permanent or straight
catheter intervention. Straight caths cause infections more frequently
than retention, and a permanent catheter WILL BE PULLED OUT by a
dementia patient. The medical community doesn't think in terms of individual circumstances and past experiences, and they love to try and trump the advocate. This constant battle has become my definition of absolute insanity!
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