Transcript
hi everyone I'm Norma Loeb founder of
the Lewy Body dementia Resource Center
this video Series has been created to
bring awareness through first-hand
experience of people living with Lewy
Body dementia their caregivers and
through expert Physicians
this crucial information will be shared
with Healthcare professionals with
families and the General Public
to heightened awareness and to enable
correct diagnosis.
please know we are here to help you
every single day on our Live helpline
I thank you for watching
early on in dementia with Lewy bodies we
can see various types of hallucinations
and they can be grouped into multiple
different categories the most common one
is probably what's called an illusion
where somebody might see a pile of
clothes for example .
I think that's a
doll or something similar so in that
respect they have a physical object
that's already there but their brain
mistakes are for something else so
that's what we call an illusion
um versus a well-formed hallucination
where you might see somebody or
something whereas there's nothing there
at all so the common thing that I hear
is that somebody might say oh I saw a
dog walk by when there was no dog there
or they might say I saw you know my
sister or somebody sitting next to me
when that person was now and not there
but may also be just be deceased or very
far away
and then you can have a delusion which
is different from the first two in the
sense that a delusion is just a fixed
form belief that's not true but it
doesn't necessarily have to be something
that they see so they could be in their
mind they could be 100 certain that they
went to the store yesterday
or that you know their spouse is having
an affair or that their children are
injured or something else where in their
mind it's it's a hundred percent reality
and how that's different than a
Hallucination is that they're not
actually seeing that person there.
it's just a thought process that they have
but in reality these are all kind of a
spectrum of the same problem but they're
just variations of that same issue and
then you can throw in something that's
very specific called capgrass where
it's kind of a mix of a hallucination
and delusion where you mistake a family
member for somebody that that doesn't
exist or they may confuse who their
family member is and typically that
involves faces in particular where they
might see a spouse and things that that
spouse is not actually their spouse and
they may not recognize them at all but
if they hear their voice or if they get
cues they can oftentimes reorient
themselves and realize who that person
is but they can very easily mistake that
person for some of that they don't even
recognize which can be very very
difficult for for family to to hear to
deal with
when I wake up in the morning
uh and I look at a wall or the ceiling
there are hieroglyphics all over the
ceilings and the walls okay they're not
really hieroglyphics but they are
totally unlike one another and there
must be a thousand symbols in the areas
that I just mentioned and I have no clue
I don't know if that's considered a
hallucination but I mentioned before or
not
but it's um it's really feelings that I've never
experienced before Nikki had auditory hallucinations
and those were the first really prevalent ones and then came the visual
hallucinations uh like a lot of people. he saw children and small animals and it
was very sweet in the beginning and then as the hallucinations progressed they
got a little bit stronger and and not so sweet uh
there was I remember an occasion where uh he woke from from a dream and said that he was seeing um squirrels and the squirrels were running all around the apartment and they were invading the bed and he needed to go out
and buy a seventeen thousand dollar bed because the squirrels had taken over and
then he got up to check to see in the
living room where the squirrels there
were they destroying things
and so it it it took on um took on different forms benign and then more aggressive forms there was never any violence happily and I know in some cases there there is with Nikki
there there was no violence uh there was
there was anger and it would come at me
in the form of mistrust but um or you don't you don't understand or
sometimes you're the crazy one
that the transference but all of it came back to
ultimately a a sweet and and docile grounding
which I think you can you can bring on by deflecting very often you you can't stop
it you just have to deflect it when it comes comes at you
hallucinations were evident from the beginning
we had a lot particularly at night in regard to small animals in the bed
and he would stamp them with his feet or hit them with his hand I had to be very
careful I always had a bolster pillow be between us so I wouldn't get belted
in his hallucinatory State because these were true hallucinations and they made him
very scared very anxiety provoking and there were animals
there were bad people also and there could be more than one bad person there could be several bad people
and he mentioned more than once that someone was trying to kill him
that they would hurt
so I tried to reassure him that he was safe
when he woke when he became more calm that he was safe and he was loved
and nobody would hurt him because I had locked the door and nobody could get in
and the doorman downstairs wasn't letting anybody in
they weren't permitted upstairs
so he was safe in his apartment and I was with him all the time
but they sure were difficult time frame
he has hallucinations still and now it could be Daytime Nighttime
anytime
and he often comes and takes my hand and says come with me
come with me I want to show you this and so he takes me into our bedroom
and he says look look on the bed
and I go over and I fluff the bed and I
I tell them what what one of our colleagues said
I'm not able to see what you see
I'm not able to see that so let me fix the bed and make sure there's nothing there
but I'm not able to see anything and that satisfies him for a time so the hallucinations
delusions I guess
I first want to say that people need to know that
Lewy Body dementia once you see One symptom it doesn't mean that symptoms
going to hang around
so it's going to shock you one day and then it may disappear and then it may
come back and so there's always this almost vigilance as a caregiver of wondering what you know when will that come back or will it come back or what
is this about
and the first hallucination was when he was first he was dramatically diagnosed with Lewy Body because uh we didn't know he had bronchitis and
he spiked a fever and just as any any new impingement like a fever a head
cold too much heat Outdoors too much cold when you're walking Outdoors can
exacerbate Parkinson's symptoms suddenly because he was Ill with the bronchitis
he suddenly developed all these Lewy Body symptoms and one of them was to
look down our hallway which just led to our bedrooms a flat hallway and to ask
me when did you put steps in the hallway
and so that was the first uh visual hallucination for Paul
those came and went and they weren't dramatic
that dramatic for a number of years
uh what was particularly dramatic was two years into the disease and I'm
dating that from the diagnosis
um
he suddenly uh did not he thought there were two of me
and the way I learned about it
he said to me you know you walk down the road to see your friend Anne and the other
Pamela comes back
and that was one of the most difficult
moments of dealing with this disease
because he was so confused and he was frightened
and I always say to people and it's kind of funny and I think I'm trying to ease
the discomfort is that I expected to see Rod Sterling standing in the corner of
my room smoking a cigarette saying that this woman thinks she's in her home but
she's really in the Twilight Zone because it feels that eerie to have
someone you love
your husband who's known you all these years look at you with the face that he turns to a stranger and he would say to me
how do I know you're who you say you are
if you go with me to see our friend Steve and Linda
will they know you
do they know who you are
and this went on and on and uh I'm lucky in that he never got belligerent
only once did he get belligerent and not trust who I said I was
um so he would usually he would believe me even though he didn't understand how
how he could really know that I was his wife
yeah I used to be very embarrassed by hallucinations
um that first one that I had which was a dragon out of the computer that happened
a couple of times and I didn't even tell anybody about it until I was
you know we were discussing the possibility of Lewy Body
um but I had others where I would often they were often in the peripheral of my
vision so uh typically to the right side and I would often see a woman standing
there
uh and it's just not from the distance either she's behind me or she's uh just
in the other room and uh not much going on but very clear right
um then I had uh uh mice that I thought I was seeing
and it got to the point where once I asked Taeyang my husband if he could get some mouse traps because I wanted to put mouse traps around the house and and his
response was we don't have mice might there's no mice we get the house treated
there's no mice and I said I could swear I've seen them and uh
then um what caused me to stop driving is uh I was driving one day and it was
just just here near the house we live on the corner and I was about to turn into
our street and I sat there uh at the turn for a prolonged period of time because I
thought I was waiting for a big truck to turn
and this big dark truck when I realized there was no truck there
because I just intellectually said that truck's not there
it is that's not that's not real and what it would as I turned the corner it
was the shadow of the hedges uh onto the street from the afternoon sun and
um that's very classic for me it's usually a shadow
or I'll see a rock while we're driving and the last day to slow down because I
think that's a turtle I don't think it's uh a little dog or something by the side
of the road and it's usually something that I'm making a mistake for whatever
the caregivers were here and I was here alone with them
um you know sometimes I would just come out in the kitchen to get some food or
whatever and he would like come up to me
and say like these people are trying to kill us like be careful
like we're not safe and I have to like reassure him
but honestly after that I just went back into my room
um I kind of left it for the caregivers to deal with
he always um would get scared that we weren't safe
and uh he would ask if we could call the police
because he is afraid someone's trying to come in someone's trying to steal his
money so I'm just trying to hurt us and I would actually use the the phone the building phone and call the doorman and reassure him that the door men are taking care of us and
that they're they're keeping us safe and that reassured him a lot
he uh was always thinking about someone trying to hurt us someone trying
to rob us someone trying to kill us and luckily some of the doorman doorman
would come upstairs and
tell him that we're safe and that that
was uh that was a lot of help
so her aides tell me that she's always
looking and she's she'd say do you see
that person over there and at first the
aid um would say no I don't see anybody
and she was but she's right there so
it's very obvious hallucinations the aid
learned not to say no after a while and
just say you know and I told her you say
well you have special powers you can see
her I can't see her but um but not to
argue about those so you know and she's
he does she definitely does now I mean
she's always looking and saying you know
waving to somebody or saying who's that
and there's nobody there I got some new
doctors for her who were willing to
explore other op you know this is not
just Alzheimer's or you know
you know whatever but um
you know he asked her Point Blank it's
like do you see like people or animals
or
and she goes oh yeah
this is I get you know there's all these
people sitting you know squatting along
the along the wall
you know they're all poor I mean she had
very they're all poor they're all like
waiting for food they were very you know
it was it was very
um detailed descriptions of what she's
seeing like she never mentioned that to
me but she was she was just like oh yeah
I see that and he's like how often oh a
lot
ing where did this come from one of
the early early ones that has stayed
with her for a long time is there's this
little boy Stuart and I've never figured
out where the name Stewart come from or
what but early on Stewart was climbing
the trees outside and he fell and he got
hurt and she was upset about Stuart or
so I was worried whether Stewart is
going to make it home if it's raining
out he needs code or he's cold or
so early on I'd always say oh no there's
no Steward there's no
we're at the place where I can say oh
she's gone home he's okay you know we
find a way to help her work through it
the other day uh when she's
at night time when she's in bed we have
a pillow under her knees and a pillow
under her heels so they don't rub so
much and
um she tends to think lately that there
are kids who get in bed with her
sometimes she'll say they're only eyes
but she'll say no stewards in the bed
so I tell all the AIDS when you go help
her to go to the bathroom don't throw
the covers or the pillows because she
thinks you're throwing the babies and
you're throwing kids and she gets so
upset so you got to move it carefully
make sure the other day I sat on the
side of the bed and she nearly had a fit
because I was sitting on Stewart
so
it's interesting that some of those
hallucinations and delusions hang on
they may shift or change the other day
Stewart was sick he needed to go to the
doctor well her ear was bothering her
and she needed to go to the doctor so
sometimes what she's saying about her
hallucinations is about what she needs
is round two not always but sometimes we
were coming back from dinner or
something and we were in the hallway and
again I had my arm on on his back for
support and I said to him because they
used to have like they had hallways that
had they were like spokes
from around Center hallway with a center
light fixture and then like a large drum
table with a flower arrangement
and I said to Jerry
do you see those children dancing around
the table they're like little little
table white children dancing
and Jerry kind of looked at me and he
said no
and I said oh oh okay good that was the
only time I ever mentioned anything to
him because I thought it was so odd
because it was like for the first time
it seemed like there was color
not
anything defined not like I could think
oh well the little girls were wearing
pink and the boys were wearing
red or it wasn't and but it was color of
some kind
and so I thought okay I'm just now I
know shut up
don't say anything else
