New To the group

August 17, 2006

Hi There

I am fairly new to the group myself. Welcome. My mom was recently diagnosed

and is currently in the hospital for an issue she should have dealt with long

ago. I can tell you that there is a ton of invaluable information here. Hang in

there and know that you are not alone. Please tune in regularly and ask what

you need to. This group is wonderful, informed and sympathetic.

My best to you

& Mom Ginny 83 yrs

August 18, 2006

Welcome to the board (don't know your name)... You've come to the right

place for answers and to vent. What meds is your mom on right now? Be

sure to get into the website board -- there is a files section,

database section, and links section that has tons of useful info for

you. You can get there through the link in my signature.

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD to

Vascular Dementia caused by mini strokes to Binswengers...; was victim

to rapid decline from Risperidone (or combination of Risperidone with

other drugs OR possibly received another " bad drug " when she was

observed/tested in a hospital in 10/05); in a NH since 11/05. Update:

on antidepressant Celexa, 20mg (still teary, but not as weepy); as of

4/21 on Exelon (a/o 6/28 began following the suggested dosage for LBD);

as of 7/1 went on ALA (200 mg) and B1.

Visit the LBDCaregivers board on the web:

http://groups.yahoo.com/group/LBDcaregivers/

(See files, suggested links, databases, photos of members, and search

previous posts)

August 18, 2006

Hi (I don't know your first name)-

Welcome to this group. You will find lots of support here.

I can really relate to what you are saying about keeping your Mother at home.

However, I did not know at that time my Dad had LBD and that he would not get

better, only worse. Keeping Dad home was my goal and we did it. I want to

tell you, it was not easy.. I had assumed we would have lots of help esp. from

our medically oriented family, but that did not necessarily happen. My

brother clearly stated from the beginning he could not change diapers. I

respect him for being so up front and he did pay for part time help for the

first 6 months. He would stop by every Sunday for a 30 minute visit during

Dad's 4 yr. illness, but that was it. My sister, who like myself, is an RN.

About the time Dad was discharged from the rehab hospital, Diane took a fall

and was laid up for about 9 months and could not help as planned. She also

lives in Baltimore almost 2 hrs. away and has 2 school age children. My

Daughter, another RN, was going through a crisis of her own with 3 teens, one

who is bipolar and and marriage problems. I must say if I was having a problem

with Dad, she would come right away. For example, she would help get Dad off

the floor, make an assessment of a medical problem, or give an occasional shower

on the weekend, but 's plate was full with working and all the problems

going on at home. My brother has 2 grown daughter, another RN in the family.

They never visited, yet alone pitched in. My son, Rusty filled my Dad's shoes

as far as being the handy man in the family. He also visited Dad daily and was

another resource used to get Dad off the floor. Then there was my daughter

Becky, who had 2 little ones. She was a God send. She, like my brother, could

not do the diapers, etc., but she sure did fill in other ways. Becky took

care of all Dad's billing problems with the insurance companies and there were

many perplexing billls after spending more than 4 months in an acute care

hopsital and rehab after suffering a severe head head injury. There were

also ongoing bills from all the specialists we took hime to. Becky had worked

as an office manager in her physician/ husband's practice, so her business

knowledge was extremely valuable. Of all the people involved, Becky gets the

award for being the most helpful and supportive. She came to vist everyday,

with first her toddler and then her newborn baty. Her little children did so

much for my Dad's morale. His room became their playroom. Dad would lovingly

watch as they played with their toys. Dad would sing to them and the girls in

turn would dance and sing for him. Becky is on the petite side, but she is

stronger than many men. She was able to move my Dad easily when he got to the

point of not being able to do anything for himself. Becky also dried my tears.

The most difficult problem in keeping my Dad at home was my Mother. She hired

very little help. My Mom would rather do things for herself then spend the

money, which she had. It was a constant argument. I worked full time at the

hospital on the midnight shift. I remained on duty when I got home. I live

next door and kept a Fisher Price Monitor on, so I could run over there if there

was a problems. I was never off duty.

When we went to see the attorney very early on in Dad's illness, he warned my

Mother that in his practice he sees where the caregiver frequently ends of

sicker than then the loved one being cared for. I can see then happening now.

My Mother is is now showing signes of dementia. I feel aged (64) and still

drained at times a yr. after Dad's death.

Despite, the drawbacks and disappointments, I am still glad we kept Dad at home.

He was depressed, but he loved being in his own home. My best advice is not to

expect too much from others as I did. If they are willing and able, count it as

a blessing. It was hard enough caring for Dad 24/7 for 4 years, but I think the

hardest part was the let down when people did not live up to MY expectations.

Hugs,

Gerry

Daughter and caregiver of Dick Deverell, who died 9/11/05 after a more than 4

year battle with LBS+D.

New to the group

I am happy to have been accepted into the LBD caregiver group. I am new

to all this, so be patient please. My Mother started showing signs of

a dementing illness 6 years ago. It took the doctors awhile to decide

that she had LBD. She was very slow in her progression until our Dad

died in March. Since then, she has really gone down hill. We have

moved in to her home to care for her. It is difficult living in someone

else's home. The loss of privacy is very hard to deal with. The night

wakenings are going to be the death of me. It's really hard to go to

work and be productive next morning after one of her nightly

wanderings. Even though it has been hard, I am adamant about keeping

her at home. She is ambulatory and has some lucid moments (actually

very few). I feel ill to think about putting her in an unfamiliar

setting with people I don't know and I know they will not care for her

(or love her) like I do. It's very sad, I feel that my Mother is there

physically, but I feel that her personality and spirit died long ago.

Anyway, thanks for the support, I'll be reading the postings for

suggestions on how my family can get through this.

August 18, 2006

tlslloyd, I didn't see your name, so I don't know what to call you, but in

any case, I want to put in my warm welcome, and assure of the support of this

wonderful List.

Sounds like you will need it.

Hang in there. I know what it's like to get up all night and be half alive

the next day.

I'm not doing it right now, but I did with two different relatives, and had

six children too. No, to put it mildly it was too much for me. Between the

babies, and the older person up all night, no thank you. I couldn't handle that

very long. The bad part was that her own daughter had a big home, and was

not working, but she would not take her mother in. She said they didn't get

along. After the poor old woman was put in a nursing home she died the weeks

later. She was really out of it. She would be rummaging through dresser drawers

during the night in the dark trying to find her glasses. All kinds of things.

Right now, your Mom is further along than my husband. Do you have someone

with her during the day when you work?

My best wishes for you and your Mom,

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.

In a message dated 8/18/2006 12:54:47 AM Central Daylight Time,

tlslloyd@... writes: