Re: New Person/Longish

[Guest guest]

Kathie,

Welcome to this site and the best of luck to you. There are many wonderful

correspondents here who are caring for parents and I am sure that when they

read your letter, they will respond with good information as well as

encouragement.

I am caring for my husband, and am a member of the LBD_caringspouse site as

well, so I feel that I am less qualified as well as currently too tired to

offer you more than a greeting.

I did also care for my MIL from the time she moved in with us at age 88 to

her death in a nursing home at age 98 1/2. (She did not have dementia until

the last few months.) One thing I did immediately was to contact the local

agency for the aged here on Staten Island. I received a lot of written

information in addition to the opportunity to discuss that situation with a

member of the agency's staff. It was a good start for me.

After raising five children, I would say you are well qualified to cope now!

Bertha (husband has had PD since 1983, LBD dx 1997)

[Guest guest]

,

I am sure you will receive a lot of information and lots of concern from the

many caring members in this group. Most of what we have all learned

regarding this disease is from one another. Welcome to the group that no one

wants to belong to..... Shirley (mother has LBD, dad is careing for her full

time and running himself ragged.) I know what you mean about wanting to help

but can not financially and time wise. Good Luck to you and your families.

>From: autumn01@...

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: New Person/Longish

>Date: Thu, 29 Aug 2002 22:35:29 EDT

>

>Hello Friends:

>I would like to introduce myself. I was permitted to join this e-group on

>August 28 which seems like weeks ago; I am so far behind. I have been

>trying to read the archived e-mails to get acquainted, but there are so

>many,

>so I am just going to start by being current. ( I have only read several

>hundred of the 7 thousand -- I will catch up!)

>

>Several years ago (More than 10) my father was diagnosed with Parkinsons.

>I

>live two states away so have not been actively involved with his care. He

>was always very pleased to be able to handle his own doctors' appointments

>and medictaions. My mother had few health problems until an aneurysm in

>her

>brain. Two years after the first hospitalization with the aneurysm she

>died.

> That was nearly two years ago, and dad has been able to be by himself.

>Shortly after her death we became aware that he was " seeing things " . We

>thought it was a reaction to being alone and he still had mom " there " to

>keep

>him company. Slowly we have become aware that it is more than that. He

>has

>a whole company of men in the back bedrooms who are either having continual

>meetings or sleeping. A week ago Saturday there was a woman in the

>bathroom

>(only one) and he couldn't (wouldn't) use it. He decided to go to the

>basement (no bathroom there). About three weeks ago, our father was picked

>up by the police in our town of approximately 9,000 at 2:30 am. He told

>them

>he was going to the federal building and had to be there before 9 am or

>would

>be considered awol. They took him home, found my sister's number and

>called

>her.

>

>There are five of us siblings ... ranging from 56 to 43. My sister is the

>only one that lived near them (Ohio). One bro is in Indiana, one in PA and

>one in TX. I live in Illinois. I have raised five children, my youngest

>just graduated high school and has started jr college where i work (for

>financial reasons). One bro is retired military and dealing with lupus;

>one

>is currently unemployed; one has four under 18 children, as does my sister

>who is employed full-time as well (for financial reasons).

>

>After my dad was found wandering, my sister took FMLA (unpaid), because she

>didn't feel comfortable leaving him alone and has been with him ever since.

>The one thing that the five of us sibs agree on is that she can no longer

>take care of him (exhaustion and financial reasons). She can't stay with

>him

>and she can't leave him alone. We began looking at alternatives. The only

>good alternative for her was committing him to full time care at an

>eldercare

>home. All of this was just happening too fast, so in an effort to buy more

>time I am bringing him to my home in Illinois. My plusses are that I will

>soon be able to cut my work hours, and have four of my five children in the

>area who have told me in no uncertain terms that we " HAVE " to make this

>work

>(taking care of grandpa). My negatives are I don't really know what I'm

>dealing with, none of us have any money (hand to mouth), my fathers assets

>are an unkept 30 year old home and the above listed children and

>grandchildren who want to do the best for him. (Just like the people on

>this

>list. I am so very impressed with all of the e-mails I have read so far.)

>Another negative is I am so very scared. I am ill-prepared to take on such

>a

>responsibility. I don't want to learn at my father's expense, yet there

>seems

>to be no other alternative. We cannot just drive him to a home and drop

>him

>off ... yet that is what it will have to come to if I don't step up to the

>plate, so to speak.

>

>I have joined this list becasue we have come to believe that my father

>actually has LBD, and it is my desire to have him re-evaluated somehow.

>I'm

>not yet sure of the meds he's taking. The only one I know for sure is

>selegeline ... and I believe some sort of dopamine. Since my sister has

>been

>the responsible person, we have all agreed not to second guess her and the

>doctors decisions. Just didn't seem fair since she was doing all the work.

>

>So, let me tell you this sincerely. In my seaching the net for

>information,

>I found this support group ... Membership must be requested. I requested

>and

>then fell into fear that I would not be allowed to be a member ... that I

>would be rejected for some reason ... and I was SO VERY DESPERATE to talk

>to

>others! I nearly cried when I got my letter that I was a member. I hope

>you

>can see both the humor and the pathos in that scene. But that is how close

>to the edge I am ... and I haven't even started.

>

>I have decided to settle down a bit and apply the one day at a time rule.

>In

>fact, so much so, I have not made a plan for where my dad will be while I

>am

>at work on Tuesday (another attempt at humorous insite there ....)... so

>I've

>decided that one day at a time will start AFTER Tuesday!

>

>Anyway, the rests of my posts won't be this long ... I " m sure. I m just

> " depressurizing " a bit. I'm going to need the information on this list to

>guide me along ... I can learn from those who have gone before me. Thank

>you

>for lighting the path with this e-group! Kathie

>

_________________________________________________________________

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[Guest guest]

> Hello Friends:> I would like to introduce myself. I was permitted

>to join this e-group on August 28 which seems like weeks ago;

Kathie welcome to the group, as has been said you will find a lot of

usefull information here. Get as much help as you can from local and

government agencies. Check around to see what Doctors would be

qualified to treat LBD, that does sound like what your dad is going

through. Make sure that you go into the doctor appointments with

him, that way you will have first hand knowledge of what was said.

And read, read, read...it isn't an easy thing to digest but the more

you know about this disease the better you will be able to help make

the right choices. My husband also was diagnosed with PD 2 years ago

and within the last month has been diagnosed with LBD. Good luck to

you and your family. Barb in Alaska

[Guest guest]

Kathie,

Your father is lucky to have such great children and grandchildren! I am

sorry to hear about your father and the loss of your mother too. You will

find this group a great place for information and there are a lot of

shoulders to lean on too! I help coordinate care for my MIL (Mother-in-law)

who was diagnosed with this beast of a disease this year, however, her

symptoms have been apparent for about 5 years. My MIL is married, has 4

children, and lives in a group home (only 5 minutes from her husband) which

we get assistance with funding for from the State of Minnesota. It is a

lovely place with only 5 patients. She has her own room and they do a

decent job caring for her. Some of the staff are better then others, but

overall, we are pleased with her care she receives. My SIL (who is in the

Navy and off at sea right now!) and my FIL (Father-in-law) are the main

family members who help orchestrate her care.

My big thing as you will see from previous posts is obtaining the proper

medical team and getting on the right medications. Both can prove to be

very challenging tasks. I can tell you what works for me and our family.

We have her primary physician who is in the same network as her neurologist

and psychiatrist. All are excellent about keeping me informed and then I

pass all the information to the entire family via email. My MIL sees her

psychiatrist once a month and we really like her. She specializes in this

field and in geriatrics. She has been great. Before my MIL fell ill to

this disease, she was vibrant and full of life! She was always dressed

nice, hair and make up perfect. She cooked, painted, bowled, and loved to

chat! Now she is so different. She no longer pays much attention to her

wardrobe and rarely cares what her hair or nails look like. She rarely

draws or paints. She has almost no short term memory left so she can't

remember what she just did which makes things hard. She doesn't smile or

talk much anymore, although she talks to herself a lot. She paces up and

down the halls of her group home. She lives in her past in her mind.

Depending on where she is in her thoughts, she may not remember she has

kids, she may be in labor, or she may tell you that she has to go find her

cat. She has conversations with her sister, children, and husband to

herself, but it is usually almost always good chatter and " healthy " for her

according to the doctor.

Things started with her just repeating herself a lot and her short term

memory was starting to give out. She was no longer able to drive after

getting lost in her neighborhood. That progressed to her saying there were

2 ladies in her home trying to take her socks. That led to 911 calls and

then she started to carry knives around saying people were getting into her

home. Finally, she left the house and was found in the backyard under a

tree in the fetal position with no shoes or coat in the middle of November

(this is Minnesota. That resulted in a hospital stay on the psychiatric

ward of Abbott. Not a great place I assure you. After a battery of tests,

she was diagnosed with Organic Brain Disease. After a few sessions with

what seemed to be the worst psychiatrist in the world, we searched for a

better doctor and found her! She has been great and things are better.

This disease has no rhyme or reason and the medical community does not know

enough about the disease. There are good days and bad days. Your " one day

at a time " approach will prove ideal for the challenges that lay ahead.

Getting the right medication " cocktail " is essential. Without it my MIL

becomes very agitated, angry, and difficult to control. Getting enough

sleep is also vital. With sleep deprivation comes difficult behavior. My

MIL attacked one of the staff at her group home due to a medication change

and lack of sleep.

The best medication cocktail we have found is: 30mg Paxil, .5mg Risperidal,

10mg of Aricept, 2000IU of Vitamin E (to slow down the progression), and

200mg of Seroquel (at night to help sleep). Since we have added the

Seroquel, she has been so much better. She is no longer waking up several

times a night and now that she doesn't experience sleep deprivation she is

doing so much better. She is smiling more and even talking more. She has a

more pleased look about her.

With LBD, often times 24 hour care becomes a necessity. I urge you to read

everything you can find on this disease and carry along one of the print

outs (there is a great 2 page document on the internet that explains LBD and

its symptoms pretty well)to give to your healthcare providers. Make sure to

get any legal needs (POA's...) addressed and taken care of. Your healthcare

provider can also assist you in obtaining outside services that you may find

helpful.

Good luck and I will include you in my prayers. Take Care,

New Person/Longish

Hello Friends:

I would like to introduce myself. I was permitted to join this e-group on

August 28 which seems like weeks ago; I am so far behind. I have been

trying to read the archived e-mails to get acquainted, but there are so

many,

so I am just going to start by being current. ( I have only read several

hundred of the 7 thousand -- I will catch up!)

Several years ago (More than 10) my father was diagnosed with Parkinsons. I

live two states away so have not been actively involved with his care. He

was always very pleased to be able to handle his own doctors' appointments

and medictaions. My mother had few health problems until an aneurysm in her

brain. Two years after the first hospitalization with the aneurysm she

died.

That was nearly two years ago, and dad has been able to be by himself.

Shortly after her death we became aware that he was " seeing things " . We

thought it was a reaction to being alone and he still had mom " there " to

keep

him company. Slowly we have become aware that it is more than that. He has

a whole company of men in the back bedrooms who are either having continual

meetings or sleeping. A week ago Saturday there was a woman in the bathroom

(only one) and he couldn't (wouldn't) use it. He decided to go to the

basement (no bathroom there). About three weeks ago, our father was picked

up by the police in our town of approximately 9,000 at 2:30 am. He told

them

he was going to the federal building and had to be there before 9 am or

would

be considered awol. They took him home, found my sister's number and called

her.

There are five of us siblings ... ranging from 56 to 43. My sister is the

only one that lived near them (Ohio). One bro is in Indiana, one in PA and

one in TX. I live in Illinois. I have raised five children, my youngest

just graduated high school and has started jr college where i work (for

financial reasons). One bro is retired military and dealing with lupus; one

is currently unemployed; one has four under 18 children, as does my sister

who is employed full-time as well (for financial reasons).

After my dad was found wandering, my sister took FMLA (unpaid), because she

didn't feel comfortable leaving him alone and has been with him ever since.

The one thing that the five of us sibs agree on is that she can no longer

take care of him (exhaustion and financial reasons). She can't stay with

him

and she can't leave him alone. We began looking at alternatives. The only

good alternative for her was committing him to full time care at an

eldercare

home. All of this was just happening too fast, so in an effort to buy more

time I am bringing him to my home in Illinois. My plusses are that I will

soon be able to cut my work hours, and have four of my five children in the

area who have told me in no uncertain terms that we " HAVE " to make this work

(taking care of grandpa). My negatives are I don't really know what I'm

dealing with, none of us have any money (hand to mouth), my fathers assets

are an unkept 30 year old home and the above listed children and

grandchildren who want to do the best for him. (Just like the people on

this

list. I am so very impressed with all of the e-mails I have read so far.)

Another negative is I am so very scared. I am ill-prepared to take on such

a

responsibility. I don't want to learn at my father's expense, yet there

seems

to be no other alternative. We cannot just drive him to a home and drop him

off ... yet that is what it will have to come to if I don't step up to the

plate, so to speak.

I have joined this list becasue we have come to believe that my father

actually has LBD, and it is my desire to have him re-evaluated somehow. I'm

not yet sure of the meds he's taking. The only one I know for sure is

selegeline ... and I believe some sort of dopamine. Since my sister has

been

the responsible person, we have all agreed not to second guess her and the

doctors decisions. Just didn't seem fair since she was doing all the work.

So, let me tell you this sincerely. In my seaching the net for information,

I found this support group ... Membership must be requested. I requested

and

then fell into fear that I would not be allowed to be a member ... that I

would be rejected for some reason ... and I was SO VERY DESPERATE to talk to

others! I nearly cried when I got my letter that I was a member. I hope

you

can see both the humor and the pathos in that scene. But that is how close

to the edge I am ... and I haven't even started.

I have decided to settle down a bit and apply the one day at a time rule.

In

fact, so much so, I have not made a plan for where my dad will be while I am

at work on Tuesday (another attempt at humorous insite there ....)... so

I've

decided that one day at a time will start AFTER Tuesday!

Anyway, the rests of my posts won't be this long ... I " m sure. I m just

" depressurizing " a bit. I'm going to need the information on this list to

guide me along ... I can learn from those who have gone before me. Thank

you

for lighting the path with this e-group! Kathie

[Guest guest]

Kathie

Big hugs to you :-)). So glad you found this group. I too lost my

mom...more than 18 yrs ago. I became the sole care giver to my dad

almost 5 yrs ago, and even before than when symptoms first starting

showing. I have one brother, 2 yrs older than I, and I am 39. He

doesn't go to see dad much and does no cares. He is supportive in my

decisions, when we talk, and has never stood in my way for decisions

where dad is concerned...and for that I am thankful.

I would suggest to you to get advance directives, power of attorney, and

the such in order while your dad is in the beginning stages. I did that

and highly recommend it. There may be times when your dad is so

delusional that P.O.A. will alleviate some of the stress if he is

hospitalized. Anything else concerning LBD, please ask me directly. I

am on my way to see my dad now, and each time keep an open mind to what

I will find. Some days he is up, walking the halls of the nursing home,

and many days he is laying in his bed. He refuses many cares, food, and

meds., yet some days he will eat a cookie and take some of his meds.

Unfortunately, this disease follows no straight and narrow path. There

are many bumps and hills along the way, yet we have all found a way to

make it through. You will too!! Take care of yourself, the caregiver.

You will be added to my daily growing prayer list.

Sandie

Des Moines, IA

[Guest guest]

Welcome, Kathie. You have already probably received some good suggestions (I

am several days behind reading posts). You will find a lot of support and

information in this group. Cheryl

[Guest guest]

Welcome, Kathie. You have already probably received some good suggestions (I

am several days behind reading posts). You will find a lot of support and

information in this group. Cheryl