Re: From Charlotte

March 6, 2005

Charlotte,

I'll try to be brief with my tuppence worth - but with LBD it's difficult as you

know - very complex!

We took care of my dad in his own home with my mum for two full years after

diagnosis. The first year was ok although we had to learn different ways &

different types of things to do with him, we had a few bad spells where he got

sick from over medication/changes of medication and he had a couple of chest

infections in immobile times.

My mum was then 75, she coped not too badly, but the nights were hardest for

her, limited sleep and as my dads condition progressed it was very difficult,

he'd be up in the night to the loo (which was never straightforward) and then

with hallucinations & general bad dreams. His hallucinations could mean he

thought there was intruders in the house, he & my mum would have to go round

with a torch-light to convince him all was well. Even then he was rarely

completely convinced. He would also want food & drinks in the middle of the

night......his night-times were never consistent.

In the daytime he could SEEM so normal, his LBD symptoms & hallucinations were

always worse from around 5 pm onwards.

In the first year we had one admission to a short stay hospital. He was

over-medicated between visits from the Consultant & his GP so they weaned him

off & re-booted everything, gave him some physio to help things along and he

came home to us again. We also had him out walking & in the car whenever we

could, again in the first year this was easy but in the 2nd year it got very

much more difficult even with a wheelchair......some days he'd know how to

co-operate and get himself out & in the car, other days he would not. Some days

we would go to the park or the mall and he'd imagine all these scenarios around

us - always danger - and we'd have to turn tail and take him home again.

But the 2nd year in general it got very much worse. There would be a mini

crisis at home every day. Even just going to the toilet was an ordeal as his

mobility got worse and my mum got more tired and she'd be trying tohelp him do

one thing while he wanted to do another. Then the nights also got worse, he was

having night-scares and hallucinations almost every night. His infections got

worse because their flat was very small & his mobility was reducing each day.

He fell easily and a small crisis would occur just because my mum couldn't get

him back up again and people would have to go running. Or he'd have a toilet

'accident' because he could not get there in time - again mobility, eyesight

problems and just general Dementia problems. We also think he suffered a few

TIA attacks - mini strokes - also affecting tiny areas of brain, his behaviour

sometimes would look like the brain was running a short-circuit.

In year three we were EXHAUSTED, very very worn down. Our lives revolved ONLY

around my mum & dads house & caring for my dad. My mum because so exhausted and

stressed that she couldn't cope with her own household so we were also running

that, shopping for them, cooking, cleaning, overseeing all the medical personnel

who came to the house, doing their washing, ironing and generally trying to be

all things. My sister went one day, I went the next, there's only the 2 of

us......we went to their house on alternate days for two solid years non

stop......no holidays,......no breaks........no social life........just my dad

and this continuing awful illness. We were all 'on call' and when the phone

went it was usually a problem, so you'd get in the car and go......over & over &

over & over........all hours of the day & night.

We initiated 'help at home' in the form of carers twice daily for my dad at the

rear end of year two. We were unable to cope with all the

washing/dressing/showering/shaving etc. and my dad was getting worse at being

able to help himself. My mum & dad were horrified at the thought of 'strangers'

coming into their lives but I'm afraid the disease finally dictates what you

mmust have. At this point we also had a once weekly visiting Physciatric nurse

(she reported to our Consultant) we had the Consultant to the house once monthly

- a wonderful man - we had a Social Worker who co-ordinated the carers side of

things and as I said the carers twice daily for my dads immediate needs. But

even with this level of care at home things were STILL getting beyond us all.

We struggled through to the start of 2004 (year 3 since diagnosis) but we knew

that eventually we were going to have to look at permanent care. My dads

hospital team in the short term physciatric unit for the elderly were advising

us to do this 6 months previous, our weekly community Physciatric nurse & social

worker were ALSO urging us to look at this path, but like many families I'm

sure, we thought that no-one could care for our dad/husband as we could and the

thought of him ever going into care of any sort just terrified us, we were VERY

reluctant to even discuss or look at it.

But I'm afraid the decision was made for us through an incident which occured

February 2004 when my dad got out in the night and put himself and my mother in

severe danger, they were both out on a cold February night in their

night-clothes, my dad had stumbled and fallen on some stairs yet still managed

to get out and my mother went after him. She couldn't get him to come back in

and finally got help from a passing motorist........they were helped back

indoors at 4 am and she phoned us. The story was actually a bit more detailed

but sufficient to say that safety was breached that night and we couldn't for

both their sakes allow it to repeat, it was a horrendous night and a catalyst to

us all that something more had to be done.

Long story short - my dad was finally admitted to a local hospital unit for long

term care of Dementia sufferers. It is 15 minutes from his home, he is seen

there once weekly by our beloved Consultant who has been with my dad since day

one of diagnosis. He has a general ward doctor who oversees the many infections

and physical problems that finally result with LBD.....my dad now has swallowing

problems, he is losing his ability to communicate, his voice is going, he has

rigidity in his limbs (fine sustained tremor I believe) and his mobility is now

very bad. But in the unit they are VERY geared to his needs, because he is in

an elderly mental health unit all patients are the same age and have various

types of Dementia, the staff are trained specifically to Dementia and are able

to best evaluate what he's capable of on any given day & also evaluate his needs

re medication, doctor visits etc.

His transfer was reasonably smooth although nonetheless heart-breaking for us.

He had gone into the short term unit first of all then was transferred from

there after we'd done our homework on what type of care would be best for him

and would serve him best. We looked at a lot of local nursing homes etc. but we

could not find any that had a decent proportion of Physciatric staff - if any.

Also a lot of the nursing homes did not know anything about his very specialist

drugs that he needed and we were told that in a lot of cases these particular

drugs would be too expensive to fund - at least they were honest. So with the

help of our Consultant Physco-Geriatrician we opted for the hospital unit where

my dad has plenty of trained Physciatric staff and a Consultant Physco

Geriatrician looking after him. We visit daily, my sister & I on alternate

days, so we continue to take a big part in his day & fully support his care. He

has his own room with en-suite loo and we have furnished it as if at home with

his own things & tv etc.

As to how you handle your dads symptoms, it's FINE to tell him he's just

dreaming, if that works then just do it. We first of all were told my dad had

'Vascular Dementia' and when he had hallucinations we told him it was " the old

Vascular problem " and used to jokingly refer to his " old vascular eyes " ......he

could accept that.

The scrap books and photo albums are a great idea, visual things need little

explanation.

I don't know what a PET scan is. My dad at one point had a CT scan, this was

year two and they were actually 'ruling out' Vascular Dementia which is a series

of tiny mini strokes also affecting and killing off parts of the brain. The CT

scan showed only miniscule stroke damage but by the amount of symptoms my dad

then had & their type they then diagnosed Lewey Body Dementia because of the

hallucinations & paranoia etc. also the shambling gait & increasing rigidity.

It's unlikely that any scan will tell you how much longer your dad has to live,

in a way it's frustrating NOT to know and yet in some ways it's better not to

know - sods law. They say that it's only at autopsy that LBD can definitely be

recognised, before autopsy or post mortem it's only a good educated guess, but

by the symptoms they're usually pretty sure. So the scan definitely won't SHOW

anything of LBD......they have to take a sliver of the brain and have it

analysed after death.

From my experience & listening to other people and web-sites everyone seems to

progress through this illness differently. My dads progression has seemed to me

very painfully slow. He has had this illness for much longer than diagnosis, we

now know that symptoms probably were occurring maybye 2 years previously if not

more. His progress of disease I'd say has sort of 'halted' in the last few

months, he is quite infirm and incapable although up, dressed, and processed

through his day, but he's reached a stage of not much communication but still

knows us all well and manages wee bits of conversation. I hear others saying

progression is much quicker......there seems no rhyme or reason.

I think seeking as much information as you can on the disease is a great help,

and also being on a web site like this where other people are having the same

problems & listening to different ideas, i wish I'd found it a long time ago!!

Just as a for instance, my dad has this recurring 'theme' that he is in prison,

that he must have done something wrong, that they're 'coming to get him'.....and

I read just yesterday that another carer is in the same dilemma with her dad -

he too has a 'prison' theme of symptoms....strange strange illness..!!

I hope this isn't too long winded, I forget where you are from Charlotte but I

hope reading my story is some help to you. Please e.mail me direct at:

thebeeches@... with any other questions or just to compare notes -

any time, I am in Scotland.

Take care,

Kathleen.

From Charlotte

Thank you to all of you for welcoming me into this. I have learned a

lot from all my readings on here. My husband has been checking out

all the links and files. Very helpful!

From my readings I was not sure if any of you had your loved one at

home still like we have my dad. My siblings and I do not want to put

him in a home if at all possible. My family is the only one close to

take care of him. The others all live at least 2 days or more away. At

what point in time do you decided they need to be in a home?

The doctors told us that if we move him then that will make us at a

point of no return with his mind. Even going to the doctors, out to

eat, just around town, or changing the furniture has him confused

lately for about 2 days. How do you all deal with that? We make photo

albumns and scrap books for him to bring him " up to date " . Is that ok

to do?

Also, with the hullusinations, we tell him he is just dreaming and it

is ok to do that. So far he is ok with that, but will that get to a

point of not working? He is not scared of them, just knows they are

very real.

He had a PET scan done this week and we will get the results next

week. What exactly will that tell us? How long we have left with him

(can they even determine that) or just how much he has left to

function with?

Realizing that all persons are different, I am assuming that this is

not like cancer and they give you a dreaded date. I think I am just

looking for something I am not going to find. For me, that is what is

making me so frustrated. And my prayers sometimes are not being

answered.

Thanks for listening,

Charlotte

Welcome to LBDcaregivers.

March 6, 2005

Hi Charlotte,

My husband, Jim, was diagnosed in October of 2003 with

LBD. Up until the year 2000 he had some parkinsonism,

mostly in his gait and his feet being stuck to the

floor and hard to get moving. In 2000 everything came

to a head; the parkinsonism, hallucinations, delusions

and dementia. I thought I was dealing with two

separate issues of Parkinsons and Alzheimers. I had

never heard of LBD and I thought I was all alone in

this nightmare. In desperation, I called the

neruologist after we had returned from a trip across

the U.S. We live in California and traveled to

Connecticut to visit my husband's family. That trip is

what brought everything on and was the trip from Hell.

Never again did I travel with my husband. The

neurologist after hearing year after year my horror

stories in dealing with this beast of a disease

finally diagnosed him with LBD in 2003. I asked him

about the disease and he told me if I had a computer

to look it up, because it could explain a lot more

than he could, so I did look it up and one link led me

to another and I found this site. This site has been a

blessing to me, because I can identify with so many

people and almost always can get an answer to help me

get through my challenges. I have come on here at 2AM

or 3AM looking for answers or just someone to help me

through whatever is occuring at the moment and because

we all live in different time zones, there is usually

someone out there that hears me and comes to my cry

for help. My husband lives at home and I am his

primary caregiver. I have no family support. I do have

a caregiver from an agency that comes twice a week for

4 hours on each of those days and also my husband goes

to a Day Program twice a week, but some days he

resists, so I can't depend that I have those days for

me. I take a weeks vacation every year and leave my

husband in respite at an Assisted Living Facility for

dementia. I feel I couldn't make it if I didn't get

away a least once a year. Since my husband does not

travel well, he and I go every 6 months to the Hilton

Hotel in our area and check in for 4 days. It is so

helpful to have a change of scenery and to get out of

the house where all I see is work surrounding me,

since I have to handle everything on my own.This has

helped me tremendously. I request a handicapped room,

so the bathroom is equipped for my husband. I feel

when I am in that hotel that I can relax, my husband

feels secure, because I am never out of sight, since

we are just in one room together and he has the TV,

which all he can do anymore is watch TV. I think I

would be a basket case, If I didn't take these moments

to replenish myself. There are times when he is very

confused when we are in the car and he will open the

car door when I come to a stop sign or signal and

attempt to get out, thinking we have reached our

destination. I have had child protection locks put in

the car to avoid this danger. I keep doing daily rides

in the car with him to keep it routine. With him the

more routine the easier for him. It is very hard to

tell with LBD when the end is coming, since they

fluctuate so much. My husband has been to no response

and very confused and disoriented then within a few

hours, days, weeks, months it all turns around and he

seems alert and lucid again. I never know what I have

from hour to hour, day to day, but I think that the

loss of swallowing is a signal when things are getting

worse, from what I read, this seems to be the time

that the LO starts to become more weak. As of now, my

husband still has a good appetite. I brought him to a

speech therapist to have his swallowing tested, he has

a little trouble with light liquids and coughing after

he takes a sip, so I thicken his liquids now or give

him smoothies.

I have learned how to handle situations through trial

and error and what works for us both. I think the

photo albumn and scrap book is a wonderful idea, it

stimulates the memory. Any stimulation is good. My

husband too is not afraid of his hallucinations and I

also tell him it was a dream and he is okay with it.

There have been a few times where he has had an

hallucination that seems real and scary to him and I

play along with him to get rid of the thing that is

bothering him and then he is secure again and goes

back to sleep.

I'm keeping you in my thoughts Charlotte, know that

you are not alone in this and that all of us are here

to help you in any way that we can.Jan Colello

--- bearteddy000 wrote:

>

> Thank you to all of you for welcoming me into this.

> I have learned a

> lot from all my readings on here. My husband has

> been checking out

> all the links and files. Very helpful!

>

> From my readings I was not sure if any of you had

> your loved one at

> home still like we have my dad. My siblings and I do

> not want to put

> him in a home if at all possible. My family is the

> only one close to

> take care of him. The others all live at least 2

> days or more away. At

> what point in time do you decided they need to be in

> a home?

> The doctors told us that if we move him then that

> will make us at a

> point of no return with his mind. Even going to the

> doctors, out to

> eat, just around town, or changing the furniture

> has him confused

> lately for about 2 days. How do you all deal with

> that? We make photo

> albumns and scrap books for him to bring him " up to

> date " . Is that ok

> to do?

>

> Also, with the hullusinations, we tell him he is

> just dreaming and it

> is ok to do that. So far he is ok with that, but

> will that get to a

> point of not working? He is not scared of them, just

> knows they are

> very real.

>

> He had a PET scan done this week and we will get the

> results next

> week. What exactly will that tell us? How long we

> have left with him

> (can they even determine that) or just how much he

> has left to

> function with?

>

> Realizing that all persons are different, I am

> assuming that this is

> not like cancer and they give you a dreaded date. I

> think I am just

> looking for something I am not going to find. For

> me, that is what is

> making me so frustrated. And my prayers sometimes

> are not being

> answered.

>

> Thanks for listening,

> Charlotte

>

__________________________________

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March 10, 2005

Kathleen, Thank you for your amazing story about your father and how LBD has

affected him. I am fairly new to this group. But your one point about an

elderly mental health unit very GEARED to your father needs and staff trained in

all dementias have hit a cord with me. Because at my mother's facility everyone

has Alzheimers and no one has LBD. And also, I thank you for explaining how

your father is as he gets worse. I know everyone is different with this disease

but your tender, loving words, help me, because I keep wanting to know what is

possibly going to happen as my mother digresses. She is still in an assisted

living facility having much difficulty walking now, she uses a walker, can

barely get up from sitting now and much more problems with memory and cognition,

esp. in the later part of the day. Thanks again for sharing. Carol B. Chicago

area.

--------- From Charlotte