Re: Father has Diffuse Lewy Body

[Guest guest]

Dear Sandie,

Welcome, although it would be nicer if you didn't have the need to be here.

My husband was diagnosed nearly 4 yrs ago and remains in our home, so I have

no nursing home experience with LBD. In fact, I have wondered how many homes

would be able to care adequately for the fluctuating needs of the LBD

patient. As for the general experiences, I would suggest that when you have

time you go to the archives here. You will find SO much experience and many

frustrations there.

I'm sorry your brother has so much trouble dealing with this reality. Some

manage it better than others. Now that you have found us you needn't feel

quite so alone anymore.

Cheryl

[Guest guest]

My heart goes out to you. This lbd with my mom is just beginning.(although I

now know her symptoms were there for a few years now) I now have new insight

in dealing with people. You may pass someone on the street and wonder why

they are the way the are. You never know the problems people face in life

until it is your turn. I don't look forward to the times ahead but hearing

everyone else share their experiences does help. I sometimes find tears

falling as I read your letters sometimes a smile comes over me. Much love

and strength to everyone. Shirley

>

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: Father has Diffuse Lewy Body

>Date: Sat, 26 Jan 2002 19:04:09 -0000

>

>My name is Sandie and my father was diagnosed with Diffuse Lewy Body about

>4 1/2 yrs ago. He lived in his apartment alone for a while and I found

>myself over there all the time helping to fix things that had been broken

>or even letting him back into his apartment when he locked himself out.

>The problems, depression, confusion, and hallucinations became overwhelming

>and safety became an issue. My brother and I decided it was time to move

>dad to a nursing facility. The first nursing facility was unable to tend

>to his needs and he became very ill. He then was moved to an Alzheimers

>unit in another nursing facility and life has been a little easier. I

>truly wish there was a better way to help him, sometimes the depression,

>crying, moods, anger, all of it is almost more than I can bare. I know

>there are times when he is overwhelmed with this also...its heartbreaking.

>I would love to hear from anyone with hands on experience that can share

>some insight to this huge disease. My brother doesn't deal well with this,

>so many times I feel somewhat alone. Thank You!!

>

>

_________________________________________________________________

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[Guest guest]

Thank you so much for your e-mail response. I am setting here with

tears in my eyes as I found it ironic that you would reply.....my mom

passed away 18 yrs ago on February 9, and her name was Shirley. Guess

it just goes to prove that someone looks over us all the time. Hey,

good luck with your mom. I pray all the time for strength and wisdom

and have nothing else to credit my making it through this disease with

my dad. You will find strength every day. You will also appreciate

that life is a gift and every day is a gift. Please e-mail anytime.

Thanks!

Sandie

[Guest guest]

Cheryl

Thank you for responding....and I wish you well with your husband. I

have found that in the nursing facilities, the Alzheimers unit seems to

be best for LBD patients. At times, my dad has many of the same

characteristics that the AD residents do, yet more times than not his

mind is so with it. This seems to be a very huge and confusing

disease....one that only family members really know about. I admire you

for keeping your husband in the home with you. Remember to also take

care of the caregiver. This can be very draining on caregivers as well

as the LBD person. Please write any time and thank you for helping me

with information on the website.

Sandie

[Guest guest]

Sandie, welcome to our group. You will find much, much information

here. LBD is a scary and baffling disease, and it really helps to

know that others are experiencing so many....if not all...of the same

problems. Mai-Liis

[Guest guest]

Thank you for responding. Even though I am not real new to the disease,

I am new to this website and appreciate all info. I can get. I have had

a few responses and the hospitality has been wonderful. I am just sorry

that we are here for this reason, yet it is comforting to see that so

many people care. You may write any time, and good luck.

Sandie

[Guest guest]

Sandie,

Glad you were able to find this group. I thought it would be of help to you

as it was to me. We can converse here or you can still call me when you need

someone to unload to.

Does your brother have a computer? Give him this address and let him read

what we are going through. Maybe it will help him to get involved.

Debbie C.

Norwalk

[Guest guest]

Debbie

Thank you so very much for this website. The hospitality has been so

warm and caring. Would love to converse through e-mails and on the

phone. I have told so many people about our conversation, just to let

them know I have found someone that can relate. Also, today my aunt and

uncle (with Parkinsons) went down to see my dad and I met them their.

It is always great to have dad have visitors other than myself. They

took him out for icecream and I got to go along. Wow....dad was in a

great mood!!!

Yes, my brother does have a computer yet I think it has recently crashed

and he is very busy and hasn't fixed it yet. I will mention this group

and let him decide if he wants to check it out. I need to meet him

where he is in this walk we face.....and know he still cares just not as

" hands on " as I am.

Thank you for the conversation Friday!! It truly means a lot to know

you and this group are there.

Sandie

[Guest guest]

Sandie--IF it will help any, all the things you wrote are ditto for

at least half the people on this board. I know that knowing that

really helped me when I first stumbled on this group.

Each family pops up an official strong person and the others are

officially useless and helpless--and they'll make more work for you

too if you let them.

But this weekend my sister brought me my valentine present (socks

with hearts on them) when she came to visit my mother because

a. she wanted them to be from her and mother both and

b. she makes fun of my fancy socks that I've bought for myself and

mother but I guess she knew I'd appreciate a pair with hearts.

She really is as supportive as she can be given her own situation and

issues and she does appreciate what this is taking from me.

My mother is grateful for my being there and talks about me all day

long when I'm not there even if she does confuse me with her mother

and act like a rebellious adolescent when I'm with her.

Baby sister is trying to get her act together--hasn't succeeded yet

but is trying. I think she was thinking about running away from home

yesterday -- or maybe suicide--I don't know. But luckily I'm psychic

and started pestering her to meet me at the grocery store. So I short

stopped whatever she had in mind. Good thing I'm a lucky guesser.

It's been about a year and half since our world fell apart. Mother

had tremors for a long time and may have been mentally degrading for

a long time but the big issues all popped up suddenly for us. It's

taken us all that time to get semi-stabilized -- each in our own way.

I just don't breathe too hard since even a strong breeze could undo

my balancing act.

> My name is Sandie and my father was diagnosed with Diffuse Lewy

Body about 4 1/2 yrs ago. He lived in his apartment alone for a

while and I found myself over there all the time helping to fix

things that had been broken or even letting him back into his

apartment when he locked himself out. The problems, depression,

confusion, and hallucinations became overwhelming and safety became

an issue. My brother and I decided it was time to move dad to a

nursing facility. The first nursing facility was unable to tend to

his needs and he became very ill. He then was moved to an Alzheimers

unit in another nursing facility and life has been a little easier.

I truly wish there was a better way to help him, sometimes the

depression, crying, moods, anger, all of it is almost more than I can

bare. I know there are times when he is overwhelmed with this

also...its heartbreaking. I would love to hear from anyone with

hands on experience that can share some insight to this huge

disease. My brother doesn't deal well with this, so many times I

feel somewhat alone. Thank You!!