Liz,

My first reaction was that if he has been in hospital due to the
underlying condition alone (and not pneumonia or a broken bone or
something else on top of it), chances are you need to find somewhere
for him to live where he can round the clock care. (You can't do this
at home, unless you stop sleeping -- not advised <G>.)

In the states, we have what are called assisted living homes. They
offer around the clock care, but people who live there are not as
impaired as those in nursing homes. Do you have something similar in
Sydney? They offer activities and such that would keep him active and
involved in those more lucid times.

Best wishes in a tough time -- and welcome to the newsgroup, a place no
one wants to be but is glad they found.

Songbird

Liz, I dont see how anyone could possibly look after soemone else 24x7 with
teh condition you describe. Even if you gave up your job, and never left the
house, there are times you'll be asleep where something bad could happen
because he is alone.

In care, he will get better care than you can provide, and just as
importantly, you'll get better care than you'll give yourself.

I think the experience of many here is that if you do try it 24x7,
eventually a crisis will occur which will mean you wont get to choose the
care for him, and maybe the crisis will be your health, and you certainly
will be in the worst of both worlds then.

<snip>

Liz, look around on this site:

http://www.lewybodydementia.org/index.html

and _do_ sign up for the very, very informative and helpful Yahoo
groups. ("LBD Email Groups" link on the left panel)

Good luck!

Deborah

Hi,
My name is pat and I am going through the same thing that you are..My
husband has also had 3 DX..Parkinsons, Parkinsons Plus,LBD,and Shy
Drager..He fell again last night and I hsd trouble getting him up...I
finally had to put a pillow under his head and cover him with a blanket
until I could get help....Miraculously he managed to get up....I have a
visiting nurse coming to evaluate him today...he will not go to the
hospital..he has been in 3 times for falls...I went to my lawyer to get
things in order and he has referred me to an expert in Health Care and
Legal issues who is meeting with me at my home in Jan....she will go
over our assests and determine which situation is best for my husband
and financially best for me....I have been to Sydney and loved it...so
glad that we went when we could...I know that things are different
there but will let you know what she suggests...Can not beleive that
this is happenning...

Liz, I still consider myself fairly new to this group as I've only been
a caregiver about 6 months. And I know that there are variations from
one person to another & severity of their condition. But from what you
describe & knowing what I've learned & personally witnessed, there is
no way I'd leave someone with dementia alone.

Left alone, you have to think about them slipping and falling. Or
thinking they can operate things including sharp knives in the kitchen,
leaving something cooking too long until they & the house goes up in
smoke. And you can't tell when they are going to have another episode &
simply not be able to fend for themselves, even if it is drinking
something or making it to the bathroom.

If your husband is in the early stages, I can see where Assisted Living
might work out. However, because you are working, I'm not even sure if
that would the best situation. If he had a serious problem, would he be
able to pick up the phone & call for help? Is he able to reason with
things like knowing which clothes are appropriate? If a snack is in the
kitchen, is he able to go get it without any problems? If he has meds
he has to take during the day, is he able to take them correctly? Does
he have any problems with toileting - my point being when you gotta go,
you gotta go & if they have a reasoning impairment then they are
probably going to wait until the last second which can cause a mess if
they don't have help ready right there.

My MIL is very fortunate in that I'm with her all day long (we use a
monitor for the night), my husband works out of the house so we are
able to share some of the caretaking, and my SIL lives right up the
street so they also help. But if I were alone or just didn't have
enough help, or needed help beyound our abilities, there is no way - my
MIL would definitely be in a nursing home. When you get to the point
where you need them in a 24 hour watch & professional care, then that
is simply what has to happen.

Call around & see if you can find a support group in your area or
perhaps find a counselor who can help advise you so you can make this
most difficult decision.

Dementia is a truly horrid disease. My heart goes out to you.This is a
fabulous group - lots to learn here & loads of support:)

Octavia

He really sounds very typical for Lewy Body, and I would strongly urge
you NOT to try and look after him at home, unless you can hire full
time help (and even then, it would be a very hard row to hoe). I've
snipped the following description on dementia with lewy bodies
(sometimes called DLB) and you can see he's really classic in terms of
what you are seeing in terms of fluctuations, falls, stupor etc.

Mary G.

Clinical Symptoms of DLB

Following a consensus consortium in 1996, diagnostic criteria for DLB
were devised. Clinical features that were most characteristic of DLB
were a progressive dementia and at least 2 of the following three
characteristics: (1) extrapyramidal (Parkinsonian) signs (typically
bradykinesia, rigidity and postural instability, but rarely tremor);
(2) fluctuating course; and (3) prominent visual hallucinations. Other
features that are supportive but not required for diagnosis include:
(1) increased sensitivity to neuroleptics (antipsychotic medications
such as haloperidol); (2) repeated falls; (3) syncope (fainting spells)
or transient loss of consciousness; (4) systematized delusions
(discussed below); and (5) hallucinations in other modalities
(auditory, olfactory, etc).

The fluctuation in cognition has been the most confusing aspect of the
diagnosis and the most difficult feature to identify and agree on.
Cognitive fluctuation has been defined as the spontaneous impairment of
alertness and concentration (appear drowsy but awake, look dazed, not
be aware of what is going on) that varies from day to day or week to
week (i.e. become worse for a while then improved, up and down course).
Suggestions have been made that fluctuation of 5 points or more in the
Mini-mental State Exam (a commonly used psychological test) total score
over 3 administrations in a 6-month period can be considered
significant fluctuation. Of course, the problem with this
recommendation is that it would be rare to evaluate a patient so often
in a clinician's office unless the patient was part of a specific
research protocol. More recently, several rating scales have been
proposed to quantify the presence and severity of fluctuation, one of
which can be administered by the caregiver.

Extrapyramidal (Parkinsonian) signs have been correlated with the
severity of dementia in DLB. There are several features that may help
distinguish DLB from PD: 1) myoclonus (an irregular jerking movement),
2) absence of rest tremor, 3) no response to levodopa or 4) no
perceived need to treat with levodopa. These signs were 10 times more
likely to be associated with DLB than PD and are not characteristic of
AD. Although clinicians tend to think of DLB only in the presence of
Parkinsonian signs, these features are not absolutely required for the
diagnosis. Several clinicopathological studies have demonstrated that
in the presence of a progressive dementia, fluctuation and visual
hallucinations, the clinical diagnosis of DLB can be made.

Neuropsychiatric Spectrum of DLB

Studies retrospectively examining the psychometric profile of patients
with DLB using Mini-mental State Exam (MMSE) scores, the
information-memory-concentration scores of the Blessed scale or the
Mattis Dementia rating scale have demonstrated that patients with DLB
perform worse than AD patients in tests of visual tracking and visual
attention shifting. DLB patients also performed worse with respect to
verbal and motor initiation capacities and in comparison of the ability
to perform similarities. With regard to visuospatial abilities, DLB
patients perform more poorly than AD patients on visuospatial tests
such as block design and clock draw testing do. DLB patients also
perform worse on the copying portion of tasks such as construction
subtests. Patients with DLB performed equally as poor as AD patients in
regards to verbal and semantic memory, naming, abstraction and episodic
memory tasks.

When these same tasks were applied prospectively to patients who met
clinical criteria for DLB, these patients were found to be more
impaired than AD patients in areas of visuospatial working memory,
timed attention tasks, and copying two- and three- dimensional drawings
and the clock draw.

When followed longitudinally, DLB patients tended to experience a more
rapid decline than seen in AD, especially when motor symptoms were
present. Patients with extrapyramidal motor symptoms deteriorated 67%
faster on the MMSE (4.5 points per year) than patients without motor
symptoms (2.7 points per year). Another study comparing DLB and AD
patients reported that the average rate of MMSE decline in DLB was 5.8
points per year compared to 4.1 points per year in AD. One study
looking at patients with AD and extrapyramidal symptoms demonstrated
greater deficits on tests of verbal comprehension, automatic speech,
semantic fluency and praxis than AD alone.

In summary, longitudinal studies have demonstrated a significantly
faster functional or cognitive decline in DLB or in AD patients with
Parkinsonism compared to AD. The exact profile of decline and the time
period for this decline is still lacking.

Hi Liz,I am in Adelaide and scorching today.
I have a Mum with late stage AD but also I work in a aged care
home(assisted living)
when I read your intro story it was to me like reliving the story of
one of our past residents.He came to us diagnosed with Parkinsons,then
staff would say he acted like a person with AD/Dementia.
As time went on he had increasingly more falls,would have psychotic
episodes and then appeared to be getting rigidity episodes.
At the time we had a RN who just wouldnt listen,over 2 days I saw this
man get to the stage where he was so rigid he could not even open his
mouth to be fed.I will never forget this day as apart from trying to
get some soft mashed potato in his mouth for the umpteenth time the RN
insisted I push a capsule of his meds in his mouth.When I refused she
pushed it in with her finger.
Needless to say I lost it with her and insisted she get a Dr before I
reported her,she did and he was diagnosed with Frozen Man Syndrome.I
had never heard of it.He was transferred immediately to hospital and
sadly from that day to this about 18 mths I never found out what
happened to him.
My strongest advice to you,push for a placement in a care facility.

Forgot, My Mum has been diagnosed from the beginning with just memory
loss Haha, Frontal Lobe Dementia,Dementia with Lewy bodies and AD with
frontal lobe dementia and capgrass syndrome.I find the capgrass
syndrome to be very interesting and not widely known of or discussed.
All in all to me they are basically the same thing but with varying
different responses and actions by the sufferer.
Michelle

Hi, Liz;

So sorry you are having to deal with this. My father in law had frontal lobe
dementia, though the kind was never diagnosed. Frontal Lobe dementias are a
little more peculiar than AD and may need institutional care earlier.

I know you are sad and frightened over his accusations. It's hard to not
take them personally when they are backed with much emotion and force. But
this is the Dementia and Parkinson's talking, and not the man who loved and
married you. Sadly, the part of your partnership which was mutual and
supportive isn't something he is capable of any more. Not in his current
state. Sometimes, there are antipsychotics that can help, but the
Parkinson's and Lewey Bodies limit what drugs can be tried.

When the frontal lobe is affected, the executive functions are often
affected before memory. So our loved ones appear more lucid, but they
hallucinate more and have no control over emotions. Neither do they have a
sense of what's appropriate. Hence - the frightening anger, the paranoia,
the obsessions over sex and money. The accusations that you are all out to
get him and suing everybody are also part of it. If you can't tell that
people are acting to help you, but they are putting you in hospital, filling
you full of drugs and saying you can't go home again - wouldn't you think
people were out to get you? Parkinson's has a major anger component as well.

My FIL held it together pretty well in doctor's offices but hallucinated at
home, obsessively entered contests and these 'send a dollar to 10 people and
see how much you get back" scams. MIL finally just stopped his access to
money by not keeping cash at home. She also did whatever she could to keep
him from getting violent. She was living on eggshells and under extreme
stress, but wouldn't accept help.

FIL finally decided that he didn't need his cardiac medication anymore (got
violent when you tried to coax) and wound up in hospital with congestive
heart failure. When he couldn't hold it together 24 hrs a day and the
hospital staff noticed just how bad the hallucinations were, the docs
refused to release him except to a nursing home. There, he wound up
'assaulting' another patient (we don't know details) and was sent to a psych
ward.

On the one hand, psych wards aren't set to deal with dementia patients and
no one made him shower or shave - for weeks. On the other hand, they did a
PET scan to finally diagnose what part of the brain was affected and found a
balance of medications which made him his old self - a sweet, calm person
(as long as his meds were given exactly on schedule). He was discharged to
and remained in a nursing home until a cascade of other health events
resulted in death a few months later.

The release from stress by putting her husband in care was extreme. MIL
slept, only rousing to eat, for the first few days, just because she was
exhausted. But then she slowly reclaimed some sense of her own life, which
allowed her to deal with her husband's condition with much better
perspective.

You need to live, too. You need to provide an income for yourself. You need
to eat and sleep. Doing these as a 24 hour caretaker is impossible. You are
not dealing with a toddler who can be put in a crib. Your husband is a large
strong man whose anger could be very destructive - and he can't control it.
Not that he won't, but can't.  You need to protect yourself by creating a
situation that is really in his best interests, even if it is arousing
extreme anger and resentment for the moment.

May the new year bring better things.

Adelle

The problem is not what you think.

http://www.midnightcafe.com/alzh/

http://www.midnightcafe.com/alzh/diagnosis5.html#recovery

I went from mean as a snake back to my cheery self by taking Capric acid for
candida yeast. Had to change doctors. Most of the dementia went away also.
Overnight.

However food allergies go hand in hand with yeast infections. Watch how he
acts a hour or two eating!!!!!!!!!!!!!! Can be anything. The butter they put
on hambuger buns at my favorite resturant would send me to lala land. I had
to quit eating potatoes for a year.

Have them tested him for metal poisoning?

Did he have major dental work before this started?

If your health is shot  then something a simple a coke from a can instead of
a bottle can mess you up. I found switching from cans to bottles dramaticly
improved my mental capabilities. Simply reading a book printed with the
wrong ink(fumes) in a closed room would mess me up. I started only reading
where there was a breeze.

This all goes away has your health improves.

Talk to a doctor about Chelation treatment.

http://www.bernardjensen.org/item.jhtml?UCIDs=1060728%7C1063169&PRID=1024630

This is a very effective alternative to chelation treatment at a FRACTION of
the cost.

I strongly advise "The cure for all disease" by Dr. Clark   Her 3 health
purges are a must.

Best of luck. If he won't or can't  do what it takes to help clear this up I
would advise a resthome. When you are that far down you don't want the
people you knew around you. You can't deal with them and don't want them to
see you like that.