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 When to start hospice, hospice resources? 
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Joined: Sat Oct 21, 2017 4:26 pm
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Post When to start hospice, hospice resources?
I am new to this forum. My father ( 71 years old) does not have a formal diagnosis of LBD. He was in good health until March-April of this year, working as a professor/driving long roadtrips/managing finances/etc., when he started feeling "off" and confused. In April he developed issues with visual perception (depth perception, speed of objects), terrifying dreams, and had to quit driving. He started having very intense, disturbing, and vivid hallucinations almost daily. He was hospitalized in April, found to have a vitamin deficiency and was diagnosed with depression and placed on a psychiatric facility briefly. He managed to get out and was at home where we hoped that this "depression" would improve. However, his erratic behavior, the hallucinations, complaints of fuzzy thinking and difficulty concentrating continued and progressed. He not only was no longer able to drive, but he could no longer read and had difficulty holding a conversation by June. In June he was having progressive difficulty walking and was barely talking. We took him to another hospital where he had a full workup. MRI and EEG were read as normal and the Creutzfeldt-Jakob Disease (CJD) CSF testing was normal. He was treated empirically with steroids (no response). He had a PET scan which showed low metabolism in the back of the brain. Despite this, the diagnosis given was again depression and he was discharged home (on family's insistence that he not be sent to a psychiatric facility where he would get electroconvulsive therapy). In any case, over the last 4 months he has further deteriorated and was again just recently hospitalized. His behavior has become aggressive at times. The lucid periods are few and far between (spaced by weeks or 1+ months) and while he is able to hold a conversation during them what he says is utter nonsense/delusions, so the thought content has fallen apart (back in April when he was lucid most of what he was saying was sensible). He is currently minimally verbal, does not eat on his own (we spoonfeed him) but doesn't yet have signs of obvious aspiration, and he is basically bedbound. He does not get out of bed on his own and has constipation and urinary retention with daily incontinence (he appears to hold in all his urine during the day and then floods the diapers and bed at night). When he is taken out of bed he has significant difficulty walking. He is stiff all over and there are episodes of rigidity and frequently a resting tremor. He can no longer clean himself. He did have a DATScan about 1 month ago which was read as normal. He has lost a lot of weight. No fecal incontinence or bedsores and no aspiration.

At this most recent hospitalization (3rd hospital, each was at a different one) the neurologist did agree that this does not look like depression and he strongly suspects a neurodegenerative dementia. He deferred recommending further tests like EEG or MRI as he said all reversible things were ruled out in June. We have finally gotten a diagnosis of dementia (the type is not specified) which will allow us to enroll him in hospice when the time comes. Does my father sound like a hospice appropriate patient? What has the experience been with nursing facilities vs 24 hr home care? How do the costs compare? What sort of things should we as a family be pushing for in terms of hospice, and what is typically provided? Of course we would want him to be in home hospice.

One final point, many of the symptoms my father has had look like LBD or at least another Parkinson's plus dementia. The negative DATScan would seem to argue against LBD (but there may be exceptions) and the extreme rapidity (normal until March, and now is dependent in all ADLs, incontinent, bedbound, minimally verbal, and hallucinating endlessly just 7 months later) seems a bit unusual. CJD remains on the differential. We are interested in having a brain-only autopsy done. I have looked into the Case Western Prior Surveillance Center to do it and have yet to hear back from them. How have others pursued brain-only autopsies locally for confirmation of LBD (if this is what it in fact is)?

Any help is appreciated greatly.

Sat Oct 21, 2017 5:07 pm

Joined: Mon Apr 03, 2017 8:13 pm
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Post Re: When to start hospice, hospice resources?
I'm so sorry for what you are going through. You seem like a very caring and capable son/daughter. Your Father's fast onset/deterioration are a similar pattern to my husband with Lewy Body. And the symptoms you mention sound entirely possible for the disease. If you really need a diagnosis at this point (not sure it's needed), it's best to look for a teaching hospital with a neuro psych program.

I'd recommend getting a complete list of his medications and review their side effects. Also review the anticholinergic medication list against what he is taking. ... e_2014.pdf In my husband's case, it was an over the counter cold medication that sent him into a psychosis. Many of the typical Alzheimer's medications are helpful with Lewy, but not universally. The rule is, go low (dose) and go slow to minimize side effects.

It does sound like he would qualify for hospice NOW. Your doctor should make a referral for evaluation. The "six month rule" for hospice isn't quite the same for dementia patients. Typically, hospice will visit him where he is living (home, assisted living, etc). They won't admit him to a residential hospice facility until he is into the active dying phase. Regardless, it's good to get hospice involved early. And do shop around for a good hospice provider. They are not all created equal. Some focus more on cancer.

Residential care is typically less expensive than 24-hour home care. And with an aggressive patient, home care could be a dangerous situation. Get a care manager who will help you find a place that will accept a patient with behavior problems. It's not an easy situation, but better to disclose up front than be kicked out of a facility when the aggression shows up.

While this is a good group of folks, the site isn't active. If you want more interaction, check out the Yahoo group for Lewy Body and the Alzheimer's discussion boards. That group includes all types of dementia, is very active and has very experienced people.


jjKing, caregiver

Sat Oct 21, 2017 6:26 pm
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