Where Do I Even Begin?

[Guest guest]

It's been a while since I've posted anything, so allow me to remind you a bit

about why I'm here. (Bring a snack and a drink, this is going to be a long

one... I have a mnl with BPD. I can't even recall what the last thing was that I

posted on here, but now there are some new developments. Also, I didn't know

what the Waif, the Hermit, the Queen, and the Witch were, so I looked them up,

and my mnl is definitely the Waif first and foremost, and the Hermit at a close

second. She is only the Queen when she doesn't get enough attention, but right

now, she's living in a big fat freaking fantasy world. Here goes. Ahem. Stop me

if you've heard this...

My father-in-law, , has Lewy Body Dementia. Have you ever heard of that? I

read about it in the book, " Making Rounds With , " written by Dr. Dosa

who was featured in the New England Journal of Medicine. He is a gerontologist,

a doctor who specializes in the care and treatment of diseases of the elderly.

Dr. Dosa writes about his experiences as a doctor and some of his patients who

have dementia, (One lady he spoke of only had arthritis, and her memory was

amazing!) and his experiences with , a male cat who would sit with dying

patients. He was the cat that would " predict " their deaths. He would stay in the

room with the patient until after their body was removed. The book is also a

collection of stories and memories from the families of patients who have had

experiences with , but it's so much more than that. For example, one

couple's story was so amazing. I sobbed as I read about and Ruth

Reubenstein and how they met in a concentration camp, and how they were

separated, how they promised to meet in a church somewhere if both of them made

it out alive, and they did. They married, had many wonderful years together, and

then Ruth got dementia. It was so difficult for that he couldn't visit her

anymore and he died of a heart attack. Or the two sisters who spoke of their

father calling in the middle of the night, asking who the strange woman sleeping

next to him in bed was. I had no idea that this book was preparing me, teaching

me how to deal with dementia. If you have a loved one who is going through

dementia, it's a good read.

My father-in-law, Newton Townsend, was born on May 17th, 1943 to Harley

Vance and Mable Varner Townsend in Barboursville, West Virginia. He is the first

born child and has a younger brother, Todd V. Townsend and sister-in-law, Nancie

Townsend of Fremont, California. His father, Harley was born September 15th,

1900, and his mother, Mable was born September 15th, 1906. Both Mable and Harley

were school teachers and Harley served as the mayor of Barboursville for a

while. attended Barboursville schools and graduated from Barboursville High

School circa 1963 or 64. He became a small engine mechanic. met his wife,

my mother-in-law, Ruth Ann Sommerville, because the families were close friends.

Ruth Ann's dad (born in April 1896, I was never told the day of his birth) was a

school teacher. Ruth Ann's car broke down, so took her to school. That's

how they got connected. They married on July 7th of 1967 and had one son,

B. Townsend, nine years (and approx. 50 weeks, 357 days) later on June

27th, 1977. I guess you could say he was an early 10th Wedding Anniversary gift.

After a stint of three years in Cincinnati, Ohio, where they managed several

properties, (Doug was born just outside of Cincinnati) they returned to

Barboursville, WV, where their parents lived, where they raised their son and

where they currently live now...sort of.

My father-in-law's display of dementia symptoms began on April 4th, 2009 on

Easter Sunday. (Looking back, there were minor symptoms before that.) My family

and I went to Golden Corral to eat together on Easter Sunday. My friends,

, Crystal Maggard and her fiance, Amos joined us that Sunday. Doug

prayed before we went to fill our plates, and Ruth Ann, who is notoriously last

minute with birthday cards and gifts, brought me a birthday card that she had to

sign, and told me not to look. She read it and signed it and handed it to .

I watched him read it (I couldn't see the front of the card), sign it, and hand

it back to Ruth Ann. He looked at her and said, " Whose birthday is it? " When I

looked at the card, it had DAUGHTER-IN-LAW on the front, written in large enough

letters that even a person with pop bottle lenses in their glasses could see it.

I turned away and started to cry. was eating. She was about to faint from

needing food. Amos was eating. (That man loves to eat.) But Crystal saw me. When

I got up to get a bit more food, she went with me. She said, " e, what is

going on? Is okay? " I told her that I wasn't sure he was or not.

During this time, I was reading the book I mentioned, " Making Rounds With

. " I got to the part where a family member was describing Lewy Body

Dementia. Dr. Dosa took a moment and explained Lewy Body Dementia. For those of

you who haven't heard of it, allow me to share a little about it.

Taken from: http://www.lbda.org/node/14

Dementia with Lewy bodies is characterized by abnormal deposits of a protein

called alpha-synuclein that form inside the brain's nerve cells.

These deposits are called " Lewy bodies " after the scientist who first described

them. Lewy bodies have been found in several brain disorders, including dementia

with Lewy bodies, Parkinson's disease and some cases of Alzheimer's.

SYMPTOMS OF DEMENTIA WITH LEWY BODIES

Memory problems, poor judgment, confusion and other cognitive symptoms that

overlap with Alzheimer's disease.

Excessive daytime drowsiness.

Visual hallucinations.

Cognitive symptoms and level of alertness may get better or worse (fluctuate)

during the day or from one day to another.

Movement symptoms, including stiffness, shuffling walk, shakiness, lack of

facial expression, and problems with balance and falls.

In about 50 percent of cases, dementia with Lewy bodies is associated with a

condition called rapid eye movement (REM) sleep disorder.

REM sleep is the stage where people usually dream.

During normal REM sleep, body movement is suppressed and people do not " act out "

their experiences while dreaming.

In REM sleep disorder, movement is not blocked and people act out their dreams,

sometimes vividly and violently

TREATMENT OF DEMENTIA WITH LEWY BODIES

There are no drugs currently approved by the U.S. Food and Drug Administration

(FDA) specifically to treat dementia with Lewy bodies.

Some experts believe this condition may have the best response of any dementia

to Alzheimer's drugs called cholinesterase inhibitors.

If the movement symptoms are severe, medications used in Parkinson's disease may

be considered.

Antipsychotic drugs should not be used in Lewy body dementia.

Individuals with Lewy body dementia are extremely sensitive to these drugs,

which are sometimes used to treat hallucinations or behavioral symptoms of

dementia.

More information

National Institutes of Neurological Disorders and Stroke

Dementia with Lewy Bodies Information Page

Information from one of the National Institutes of Health (NIH).

Mayo Clinic - Lewy body dementia

Information from Mayo Clinic's consumer health information Web site.

Lewy Body Dementia Association, Inc.

A nonprofit organization providing information and assistance to individuals

with the disease, caregivers and medical professionals.

Here is a more in depth explanation of symptoms and facts about the disease:

From: http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=570

Facts

Dementia with Lewy Body (DLB) is also called " Lewy Body Dementia " (LBD),

" Diffuse Lewy Body Disease " , " Lewy Body Disease " , " Cortical Lewy Body Disease " ,

" Lewy Body Variant of Alzheimer's Disease " or " Parkinson's Disease Dementia. " It

is the second most common dementia, accounting for 20% of those with dementia

(Alzheimer's Disease is first). Dementia is a gradual, progressive decline in

mental ability (cognition) that affects memory, thinking processes, behavior and

physical activity. In addition to these mental symptoms, persons with DLB

experience physical symptoms of parkinsonism, including mild tremor, muscle

stiffness and movement problems. Strong visual hallucinations also occur.

DLB is named after smooth round protein lumps (alpha-synuclein) called Lewy

bodies, that are found in the nerve cells of the affected parts of the brain.

These " abnormal protein structures " were first described in 1912 by Frederich

Heinrich Lewy, M.D., a contemporary of Alois Alzheimer who first identified the

more common form of dementia that bears his name.

Lewy bodies are found throughout the outer layer of the brain (the cerebral

cortex) and deep inside the midbrain and brainstem. They are often found in

those diagnosed with Alzheimer's, Parkinson's, Down syndrome and other

disorders.

The cause of DLB is unknown and no specific risk factors are identified. Cases

have appeared among families but there does not seem to be a strong tendency for

inheriting the disease. Genetic research may reveal more information about

causes and risk in the future. It usually occurs in older adults between 50-85

years old and slightly more men than women have the disease.

Symptoms

Initial symptoms of DLB usually are similar to those of Alzheimer's or Vascular

Dementia and are cognitive in nature, such as acute confusion, loss of memory,

and poor judgment. Other patients may first show the neuromuscular symptoms of

parkinsonism—loss of spontaneous movement, rigidity (muscles feel stiff and

resist movement), and shuffling gait, while still others may have visual

hallucinations as the first symptom. Patients may also suffer from delusions or

depression.

KEY SYMPTOMS ARE:

Problems with recent memory such as forgetting recent events.

Brief episodes of unexplained confusion and other behavioral or cognitive

problems. The individual may become disoriented to the time or location where he

or she is, have trouble with speech, have difficulty finding words or following

a conversation, experience visuospatial difficulty (for example, finding one's

way), and have problems in thinking such as inattention, mental inflexibility,

indecisiveness, lack of judgment, lack of initiative and loss of insight.

Fluctuation in the occurrence of cognitive symptoms from moment to moment, hour

to hour, day to day or week to week. For example, the person may converse

normally one day and be mute and unable to speak the next day. There are also

fluctuations in attention, alertness and wakefulness.

Well defined, vivid, recurrent visual hallucinations. These hallucinations are

well formed and detailed. In DLB's early stage, the person may even acknowledge

and describe the hallucinations. They are generally benign and patients are not

scared by them. Hallucinations may also be auditory (hearing sounds), olfactory

(smelling or tasting something) or tactile (feeling or touching something that

is not there).

Movement problems of parkinsonism, sometimes referred to as " extrapyramidal "

signs. These symptoms often seem to start spontaneously and may include flexed

posture, shuffling gait, muscle jerks or twitches, reduced arm swing, loss of

dexterity, limb stiffness, a tendency to fall, balance problems, bradykinesia

(slowness of movement), tremor, shakiness, and lack of facial expression.

Rapid Eye Movement Sleep Behavior Disorder. This is characterized by vivid

dreaming, talking in one's sleep, and excessive movement while asleep, including

occasionally hitting a bed partner. The result may be excessive daytime

drowsiness and this symptom may appear years before DLB is diagnosed. About 50%

of patients have this symptom.

Movement and motor problems occur in later stages for 70% of persons with DLB.

But for 30% of DLB patients, and more commonly those that are older, Parkinson's

symptoms occur first, before dementia symptoms. In these individuals, cognitive

decline tends to start with depression or mild forgetfulness.

My father-in-law has had noticeable symptoms since atleast 2008. Excessive

daytime drowsiness, movement symptoms such as falling and his hands shaking. I

shrugged off news of 's constant falling because my in-laws are hoarders,

like on the television show, and there are newspapers and boxes everywhere. I

assumed that he slid on newspapers. But Ruth Ann and I would hang out everyday

and she would say something atleast five times a week like, " fell today, "

or " I fell today. " And I always assumed it was from the mess. was even

tested for Parkinsons several years ago (circa 2006/2007) and I have never heard

about the results of that test. And in 2008, Ruth Ann asked Doug and I to pray

for because he was seeing " faces on the highway " which concerned us.

On Tuesday, November 10th of 2009, had a cyst removed from his knee. He was

in the hospital overnight. On Friday, May 14th, 2010, had another surgery

on his knee. He had spinal anesthetic, and he was happy and ready to eat after

surgery. He chatted away as he munched crackers and begged for more food. He was

in the hospital from that day to May 29th, on a Saturday. Ruth Ann was still

working at the time, and I remember the week of Monday, May 17th, he called one

night, freaking out, asking where Ruth Ann was. I looked at the clock and said,

" , it's only eleven-thirty. " He said, " I could have swore the clock said it

was after midnight. " (She got off work at midnight.) " Okay. Thank you. Love you.

Bye. " Then he hung up. I reported this to Doug and to Ruth Ann who said that the

clock in his room was fast. I asked how fast. She said five to seven minutes. So

at eleven-thirty p.m. his clock read 11:35 to 11:37 p.m. not 12:00 a.m. or

something after.

Doug and I had been in Louisville, KY visiting the newlyweds, Crystal and Amos.

We went up for their wedding in March/April 2010 and then again in June of 2010.

While we were in Louisville, Ruth Ann called and informed us that was back

in the hospital for nausea and abdominal pain on June 24th on a Thursday . They

were going to release him on Friday, June 25th, but Ruth Ann begged them to look

more into his complaints (the Queen moment may have saved his life because she

is NOT assertive very often), and they found an obstructed bowel. Things are a

blur from there. He was in the hospital and had atleast two more surgeries, one

for a twisted bowel, and another for intestinal problems. During this time

(prior to receiving anesthesia) he was confused and had no idea where he was or

what was going on. Doug would have to go watch him so his mother could go to

work or go home and get things. (Ruth Ann had to quit her job to become his full

time caregiver.) While we were there, he didn't know who we were, he kept

thinking his was at work, he kept having hallucinations, he slept 90% of the

time. Doctors kept saying it was the anesthetic. I wasn't buying that. He was in

the hospital for almost two months. Finally, he was taken to Huntington Health &

Rehab, where he was still confused, but in a better mood. He would hold part of

a conversation before drifting off to sleep. He remembered 's cat Biz and

our cats. Then in late August, he was taken to Chateau Grove in Barboursville to

get rehabilitated, and every single day there, he walked with the use of a

walker to the dining hall for breakfast, lunch and dinner. He didn't have very

many days of confusion there, but again, that's how Lewy Body Dementia works.

The person is perfectly fine for several days, weeks, maybe even months, then

they return to their state of confusion and fear.

In November, circa the 30th of 2010, was sent back home to live. The house

was still in the same condition as it had always been, except the outside was

cleaned and painted. The physical therapist was coming in, but they refused to

come back until the house was cleaned up. In December, the 22nd or 23rd,

was hospitalized again for a stomach virus.

In May/June of this year, a person who was helping and Ruth Ann get to

doctor appointments abused through carelessness and being rough when he was

helping him in and out of the car and in and out of their house. He complained

about the mess, he complained about Ruth Ann, saying she was neglecting her own

husband, then he reported her to Adult Protective Services. (If I ever see that

man who abused my fnl out in public, I will abuse him!) Several people called

Doug from APS asking a bunch of personal questions. I was certain that

would become a ward of the state of West Virginia, but for some odd reason, the

case was dropped, even after the social worker seen the state of the house. I'm

glad for some many reasons that it was dropped, but I'm also shocked that

nothing has been done about it.

On July 21st of this year, was rushed back to the hospital for muscle

degeneration. Dr. Ferguson recognized the symptoms of dementia, and ordered an

MRI. They got one clear picture that showed more atrophy than normal for a man

who is 68 years old. Dr. Ferguson said he had Lewy Body Dementia, which is what

I've been saying for the last two years! Then, the hospital shipped him off to

Heartland of Riverview in South Point, OH and away from Dr. Ferguson, who can

maybe help him, although I'm not sure would benefit from help this late in

the game.

My mother-in-law is in denial. She still thinks it's a permanent issue from the

anesthesia from the surgeries he had over a year ago now. We could tell her all

day that he has dementia, but she's still hanging on for dear life to her

fantasy. She doesn't want to lose her husband. She still believes in the power

of prayer and that God still heals today. Don't get me wrong, there is power in

prayer and God can heal and still heals today, but until God intervenes, we have

to look at and deal with the now situation. That's good advice that I need to

live by as well, but I have OCD and I'm afraid of getting fat, but that's

another story for another time.

My mother-in-law is stuck in the Waif and the Hermit roles, and I understand she

probably does feel helpless, but she's living in a fantasy world. 's

brother, Todd gets a completely different story from her because she's wearing

rose colored denial glasses! She says, " Oh he's doing so much better today, "

which translates to, " He was awake longer than an hour and he went to physical

therapy and he's not talking about the hallucinations at this very present

time. " So then, Todd and his wife Nancie call and get the real story from me and

my husband. Like today, they heard from mnl about how well my fnl is doing on

his walker, and I told them what she really said, which was... " isn't doing

well in physical therapy. He walked on his walker a little bit... " and no

mention of if he did well or not, but I'm guessing not. And then there's my fnl

and his dementia...Here's an excerpt from a message I sent to Nancie.

" It's obvious that Ruth Ann is either telling you and Todd things that she's not

telling us, or she's telling you and Todd what you want to hear. She tells us

that is having a hard time in physical therapy and even falls asleep while

he's in P/T. She says that he's walked on a walker, but didn't say whether he

did well or not. She says they go outside during the nicer days we've been

having, and that is still confused and he tells her that he's in West

Virginia. She argues with him, which doesn't help. Doug and I just play along

when he insists on these hallucinations being real. Arguing with someone with

dementia is counter productive, just like yelling at your children or your

spouse. is still confused and has that horrible frown on his face almost

every single time I go in with Doug. (The times I wait in the car for them, Doug

comes out and says he's in a good mood, so I'm beginning to think it only

happens when I'm not there.) He still bursts into tears at times and when Ruth

Ann tries to tell him where he is and that he's getting physical therapy, he

says, " Yeah right. I don't have a room or a home. " Then he tells her or us that

the gremlins informed him of these things, and says something like, " No wonder

they laughed at me. " So I'm having a hard time thinking that being at

Heartland is beneficial to him in any aspect. What I do know is that they don't

have to use that sling to get him in and out of bed or in and out of the

wheelchair anymore, but so far, that's the most progress I've seen. I still

wonder why the hospital wanted him to go to a facility so quickly. We finally

found a doctor who knew what was going on with , and proved it with some of

the tests he did, and then as soon as that happened, they made him go to

Heartland. Doug and I are beginning to wonder if he will see Dr. Ferguson again,

or if/when he goes home, things will go back to the way they were before, and

then the cycle starts over again. Home Health refuses to come back until the

house is cleaned up, Ruth Ann wasn't making him use his brain and she can't take

care of him by herself, and Doug and I are concerned that things will go back to

the way they were before.

When we were staying there years and years ago, Doug and I cleaned up the

bathroom, living room, dining room, and kitchen. Within one day, the living room

was back to the way it was before, the kitchen didn't even look like we cleaned

it. The bathroom and dining room looked good for a couple of days, then it went

back to the way it was. I mean no disrespect at all. It's just that Doug and I

have been there and done that several times. The storage building that they pay

for is loaded with trash and empty boxes. This was stuff that they took over

when they first returned from 's mother's house, and that did not clear even

one fourth of the boxes out of the house. If they had a storage building,

there's no guarantee Ruth Ann wouldn't go out and drag stuff from the building

back inside the house that she " needs " for some reason. Doug and I cleaned up

the two upstairs bedrooms and had them looking nice, but now, they're worse. The

room we stayed in was spotless and & Ruth Ann used to come upstairs and

hang out with us. (Those were some good times.) Ruth Ann was depressed when we

moved the first time, so they would come and hang out three times a week in our

first place. (I can't wait until we get a permanent place to live, something we

own or rent to own instead of just renting.) But anyway, we've tried outright

cleaning the house ourselves, even throwing newspapers away. We employed the

help of some friends one time, and we found a newspaper from 1987 that she said

she " might want to read. " never said much about the hoarding. He was the

enabler of the situation. As a matter of fact, he told Doug that the gremlins

were the reason the house was like that, because they would mess things up. Doug

and I giggled about that one when we were out of earshot. We couldn't help

ourselves.

Whatever we can do to help. Just don't ask me to clean the house again. I'll do

the polishing and detailing after the majority of the threat has been removed. I

just can't put all that hard work into it again for fear of seeing it go back to

where it was. I know it sounds crazy, but I need a legal, notarized document

with her signature on it, stating the house will remain clean/safe for family

and visitors, and I'm not trying to be mean. I want what's best for her and for

them, and sometimes I can be controlling, but I know in the end that she will be

happier and they will be safer and healthier because of this. I'll even find

them a dining room table (they need one) and a better couch (theirs is falling

apart), as well as a refrigerator. (Theirs is not working properly.) We'll just

try and take it as it comes, and again, whatever we can do, we'll do it.

I agree that needs to be able to walk and move (which is why he's staying

at a facility). I just don't want his mental state to be ignored. If he's in the

early stages of dementia, he may have a few fair to good years with treatment. I

also want Ruth Ann to wake up and see the situation for what it is instead of

through rose colored denial glasses. Right now, she thinks the aspirin regimen

will make 's mind return to normal. I tell her if that were the case, the

regimen would have started working by now.

So, that's what I'm going through. Any suggestions?

[Guest guest]

Long post, short answer. We never have success at making BP s do the

right, or healthy thing. Cleaning for them, if they are hoarders, ( my

nada was) is short term, ineffective, and unappreciated.

And sadly, short of them climbing up on a building with a rifle and

opening fire, mental health and law enforcement will not intervene, make

that, cannot , and press them into healthy choices.

Look around you. Many of the homeless you see have mental health

problems, and in any sane , logical world, ought to be

institutionalized. But the bar for that is very, very high. They can

choose to sleep outside in sub zero weather to avoid going to a shelter,

and no one will interfere.

It is sad. It is unfair. But it is the reality in which we live.