Re: My Daddy

[Guest guest]

Dear ,

My husband, Jim, also has LBD. I am 57 and my husband

is 78. I think that your brother e-mailed one time

that there is a big gap in your parent's ages also. I

also live in California. I am in the San Francisco Bay

Area. Where are you located? I visit Southern CA at

least once a year. I have a good friend that lives in

Laguna Hills. Possibly we could meet one time. I was

sorry to hear that your dad also has other

complications besides all the LBD symptoms. It must be

very hard for you, especially being so far apart from

your family. I am glad that you have found this site.

There are many long distant caregivers and others

feeling removed from their LOs. Guilt seems to run

through us all whether we are an at home caregiver or

a distant caregiver. We all need to know that we are

doing the very best that we can in whatever our

situation is with our LO. Don't beat yourself up for

not being there with your dad. You are there with him

in spirit. Even we at home feel at a loss of what we

can do for our LOs. We are not always in control of

this disease. Know that you are not alone in your

feelings. Come here and vent, cry, scream and laugh

anytime. We all understand your emotions....Jan

Colello

--- Caution_BlondeThinkin

wrote:

> Hi,

>

> I am very new to this group. My brother found the

> group and joined.

> He then passed it on to my mom who is taking care of

> my daddy who

> was diagnosed with LBD in February. My brother is

> elevatorman71360.

>

> It is hard for me because I live in California and

> the rest of my

> family lives in Louisiana. I do not feel like I am

> able to help with

> the care of my daddy, as I am so far away. I am a

> single mom,

> raising two children, working full-time and going to

> school full-

> time. I feel so helpless not being able to help my

> mom with daddy.

>

> We did not find out what was wrong with him until

> February. We knew

> something was wrong but we were receiving no answers

> from the

> doctors in Louisiana. It seemed like they were

> giving us the

> runaround. Finally his Cardiologist told my mom that

> if it was his

> spose he would recommend the Mayo Clinic. Well mama

> said she would

> think about it. It took a week to think about it

> because my dad had

> a " bad episode. " He took off while my mom was in the

> other room and

> we didn't know where he went. He was hallucinating,

> forgetting where

> he was, getting loss...etc... I was in California

> and unable to help

> look for him. My brother lives two hours away and

> took off to mama's

> and went looking for him. My brother called his

> friends to help

> search for him and my best friend from High School

> lives there so I

> called her and she went looking for him. This was

> the worst day of

> my life. I couldn't do a thing to help. My best

> friend found him

> sitting in the parking lot of Home Depot. She didn't

> approach him

> but called my brother who went to where he was at.

> He looked so lost

> and confused I was told.

>

> I had already made plans before this episode to fly

> out there on a

> Friday to help mama for a week. Well my plans were

> stepped up by two

> days and I flew to Louisiana the very next day. Mama

> had made the

> decision to go ville, Florida where the Mayo

> Clinic was at.

> Well this was for the best. I went with them and

> within 10 minutes

> of seeing the doctor we were told Daddy suffered

> from all the

> symptoms of LBD. We had never heard of it until

> then. We were glad

> we had found the answers and daddy was put through a

> series of

> tests. Where they found he had Lung Cancer along

> with other minor

> things. I can not say enough about the Mayo Clinic

> in Florida. They

> actually care about their patients.

>

> I was able to be with mama through the beginning but

> now I am here

> in California and not able to help. Except for

> listening when mama

> needs to cry, talk or even laugh with. I have always

> been a " Daddy's

> Girl " and I am losing my Daddy. I am not ready for

> this to happen. I

> know that is selfish but that is how I feel. I am

> going home after

> my kids get out of school in June. I want them to

> see their

> grandfather. My children have always been so very

> close to my daddy,

> especially my son, who is 15 now. If I could move

> back to Louisiana

> to help my mom with my daddy I would in a heartbeat.

> I am unable to

> because I am not able to move my children out of

> state.

>

> I know this seems like I am rambling on and I am

> very sorry. This

> has been inside me and I have not had anywhere to

> talk about it. My

> mom needs me, my brother needs me, my kids need me,

> and most of all

> my daddy needs me. I still need my daddy though. I

> don't know what

> to expect with this disease or how long we do have

> with daddy. If

> anyone can help I would really appreciate it. I want

> to know how I

> can help my mom, brother and children through this.

>

> Thank you for taking the time to read this email and

> hope it made

> some sense, as I am crying as I type.

>

> Take Care,

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi Jan,

You are right my brother did email once. My mom is 57 and my daddy

is 74. I live in the Palm Springs area. That would be nice to meet

someone who knows about LBD. I only know about LBD on what I have

read in the brochures from the Mayo Clinic and the research we did

online. Yes, it is very hard to be so very far away. I feel so lost

and even alone. Thank you for making me feel so welcome.

My mom joined the group as well. If she is reading this, " Hi Mama, I

love you very much! " Her screen name is gragra.

Janet also feel free to write or send me a message in yahoo.

Take care,

>

> > Hi,

> >

> > I am very new to this group. My brother found the

> > group and joined.

> > He then passed it on to my mom who is taking care of

> > my daddy who

> > was diagnosed with LBD in February. My brother is

> > elevatorman71360.

> >

> > It is hard for me because I live in California and

> > the rest of my

> > family lives in Louisiana. I do not feel like I am

> > able to help with

> > the care of my daddy, as I am so far away. I am a

> > single mom,

> > raising two children, working full-time and going to

> > school full-

> > time. I feel so helpless not being able to help my

> > mom with daddy.

> >

> > We did not find out what was wrong with him until

> > February. We knew

> > something was wrong but we were receiving no answers

> > from the

> > doctors in Louisiana. It seemed like they were

> > giving us the

> > runaround. Finally his Cardiologist told my mom that

> > if it was his

> > spose he would recommend the Mayo Clinic. Well mama

> > said she would

> > think about it. It took a week to think about it

> > because my dad had

> > a " bad episode. " He took off while my mom was in the

> > other room and

> > we didn't know where he went. He was hallucinating,

> > forgetting where

> > he was, getting loss...etc... I was in California

> > and unable to help

> > look for him. My brother lives two hours away and

> > took off to mama's

> > and went looking for him. My brother called his

> > friends to help

> > search for him and my best friend from High School

> > lives there so I

> > called her and she went looking for him. This was

> > the worst day of

> > my life. I couldn't do a thing to help. My best

> > friend found him

> > sitting in the parking lot of Home Depot. She didn't

> > approach him

> > but called my brother who went to where he was at.

> > He looked so lost

> > and confused I was told.

> >

> > I had already made plans before this episode to fly

> > out there on a

> > Friday to help mama for a week. Well my plans were

> > stepped up by two

> > days and I flew to Louisiana the very next day. Mama

> > had made the

> > decision to go ville, Florida where the Mayo

> > Clinic was at.

> > Well this was for the best. I went with them and

> > within 10 minutes

> > of seeing the doctor we were told Daddy suffered

> > from all the

> > symptoms of LBD. We had never heard of it until

> > then. We were glad

> > we had found the answers and daddy was put through a

> > series of

> > tests. Where they found he had Lung Cancer along

> > with other minor

> > things. I can not say enough about the Mayo Clinic

> > in Florida. They

> > actually care about their patients.

> >

> > I was able to be with mama through the beginning but

> > now I am here

> > in California and not able to help. Except for

> > listening when mama

> > needs to cry, talk or even laugh with. I have always

> > been a " Daddy's

> > Girl " and I am losing my Daddy. I am not ready for

> > this to happen. I

> > know that is selfish but that is how I feel. I am

> > going home after

> > my kids get out of school in June. I want them to

> > see their

> > grandfather. My children have always been so very

> > close to my daddy,

> > especially my son, who is 15 now. If I could move

> > back to Louisiana

> > to help my mom with my daddy I would in a heartbeat.

> > I am unable to

> > because I am not able to move my children out of

> > state.

> >

> > I know this seems like I am rambling on and I am

> > very sorry. This

> > has been inside me and I have not had anywhere to

> > talk about it. My

> > mom needs me, my brother needs me, my kids need me,

> > and most of all

> > my daddy needs me. I still need my daddy though. I

> > don't know what

> > to expect with this disease or how long we do have

> > with daddy. If

> > anyone can help I would really appreciate it. I want

> > to know how I

> > can help my mom, brother and children through this.

> >

> > Thank you for taking the time to read this email and

> > hope it made

> > some sense, as I am crying as I type.

> >

> > Take Care,

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Hi ,

I am Kathleen and I live in Scotland.

I lost my daddy 5 weeks ago, he died from LBD. He had had the symptoms for

about 6 years and was diagnosed 3 years before his death.

We too knew nothing of Lewy Boyd but boy we became fast learners. My dads

symptoms were at first thought to be Vascular Dementia - a series of tiny mini

strokes causing odd behaviours. He DID have Vascular Dementia but Lewy Body was

the predominant illness.

We took care of him at home for 2 years, this was really really tough. My mum

who was 75 at the time was main caregiver, but my sister and I both only live 15

minutes away from their home. We both also work from home so were able to

commit a lot of time to help mum caring for my dad. We went to their house

every day for 2 years taking alternate days each, our lives and families put on

the back burner. We cooked, cleaned, took care of their money & business,

arranged all the care help, doctors, consultant, community nurse, home care,

oversaw any medical appointments. Shopped for them, paid their bills, collected

their banks and pension money, and on top of this took care of my dads every

progressive need.......the first year wasn't so bad but the 2nd year was VERY

tough.

We had many many crisis during this time. Like you though once my dad was

diagnosed we went into shock. It took us some time to realise and come to terms

with the fact my dad had essentially a terminal illness.

The features and symptoms of Lewy Body Dementia appear one by one. The disease

NEVER stays the same, it fluctuates up and down and in all directions - just to

confuse the carers as well as the patient. It is a very difficult disease to

care for as you never know from one day to the next what your getting and no two

patients react the same way. With LBD there are GOOD days with a lot of

cogniscance......unlike Alzheimers which is the constant slow downward decline.

Lewy goes Up/down Up/down Up/down. In year 3 my dad was getting very ill with

constant infections, chest infection, urine infection, kidney infection - all

caused by his immobility and spells of Lewy Body which would really lay him

low.....constant bouts of agitation would keep him up all night long rambling,

then on the down time he'd sleep 24 hours straight, this erratic pattern meant

he wasn't eating/drinking/getting meds as normal - thus the infections. He also

had many falls with lewy Body which then made him hesitant at times to move -

immobility also causes infection.

Eventually into year 3 after actual diagnosis (but probably year 6 of the actual

disease) we had to look at permanent care as we could no longer cope. We were

lucky finding a local hospital Dementia unit and the Consultant who cared for my

dad onhome visits was able to oversee him, the care was good but it was so

heartbreaking to move my dad finally from his home - it's something I don't

think I'll ever really get over.

He was there for one year and 5 days before he died. The care was great, we

still visited every day and participated a lot in his daily routine. Took him

out almost every day, he had his own little room and we furnished it with his

own things & his tv & videos and family photos, his room looked out onto a

little courtyard garden which we used often. But the disease progressed and he

just broke down under it and evnetually lost most of his functions, speech went,

appetite went, mobility went, he had constant infections and the neurological

damage finally got beyond what his body could fight.

Even as I write to you now I cannot believe he is gone, it is devastating, but

this is Lewy Body. I'm trying here just to let you see that even though your at

a distance it's the same for those of us who are on hand to help. Sure I have

the 'comfort' now of knowing I did all that I could throughout my dads illness

and hopefully we were a comfort to him, but now that he's gone enough never

seems to feel like enough. I absolutely ACHE for what your going through right

now, please just know that your not alone out there.

Obviously your circumstances are such that you have to be at a distance, so

content yourself with long distance care. Write to your dad and have someone

read your letters to him if he can't read them himself. Better still record

some tapes and send them, little cassettes of day to day life with your kids,

I'm sure he'd LOVE that, hearing your voice and his grand-kids, there ARE things

you can do to help. Taking regular vacations to see him as you can afford,

offering your mom somewhere to run to when SHE needs a vacation (and she will

need one believe me) if someone else in the family can look after dad your mom

can have a break.........send him treats by post....simple things, sweets that

he likes or a video or dvd that he likes. And obviously you have access to the

net, research his illness, gather information, print off fact sheets, make a

diary of his days as you hear them from your mom - this can be really useful in

doctors appointments and your family who are caring for dad will be too

exhausted to do it.

Don't feel your at a distance because there are miles between you - contact him

daily by e.mail if your brother has a computer....get him to print off your

daily or weekly e.mails for daddy......tell him how much you love him and hug

him from afar.....he can still listen and he will still understand.

As for the disease itself, well there ARE good drugs out there that help a lot

with the hallucinations and other symptoms. In the first year my dad was on

Seroquel which worked well with calming the hallucinations, it didn't take them

away completely but it helped them become less and manageable. Second year he

went onto Exelon which for us was the BEST LBD drug....it gave him back great

mobility which fast seemed to be disapearing and helped enormously with other

things like peaceful sleep, helped him be more articulate, balance got

better........but both of these drugs seemed to have a shelf life of about a

year. In the third year he went onto Reminyl which again helped, kept his mood

very happy, but by this time the disease was taking over and getting beyond the

drugs really. All of these drugs however work differently on every different

LBD patient (another frustrating aspect of the disease) what works well for one

may not work well for another, so they HAVE to be overseen by someone competent

like a Physco-Geriatrician, we're very lucky here in the UK to have good

consultant care that is free.

I know EXACTLY how your feeling right now, like you have the weight of the world

on your shoulders, but your dad could still have a way to go in his illness yet,

again everyone progresses differently. Even with the illness though he can

still find good moments with you, send him a favourite teddy bear or something,

tell him you sent it to watch over him and keep him company as you can't be

there, it's amazing what brings comfort. We were lucky, I could hold & hug and

kiss my dad every single day, but dealing with the illness close up and personal

was also really really difficult so there's no easy answers out there.

Try and arm yourself with information that will help you understand what he and

your family will be going through and just try to accept what you have left of

him WHILE you can, there will be precious moments in there as well, it's not all

gloom and doom, just know that lots of others on here know what your going

through and will do anything they can to help.

Sending hope, courage and hugs your way.

Kathleen - Scotland.

My Daddy

Hi,

I am very new to this group. My brother found the group and joined.

He then passed it on to my mom who is taking care of my daddy who

was diagnosed with LBD in February. My brother is elevatorman71360.

It is hard for me because I live in California and the rest of my

family lives in Louisiana. I do not feel like I am able to help with

the care of my daddy, as I am so far away. I am a single mom,

raising two children, working full-time and going to school full-

time. I feel so helpless not being able to help my mom with daddy.

We did not find out what was wrong with him until February. We knew

something was wrong but we were receiving no answers from the

doctors in Louisiana. It seemed like they were giving us the

runaround. Finally his Cardiologist told my mom that if it was his

spose he would recommend the Mayo Clinic. Well mama said she would

think about it. It took a week to think about it because my dad had

a " bad episode. " He took off while my mom was in the other room and

we didn't know where he went. He was hallucinating, forgetting where

he was, getting loss...etc... I was in California and unable to help

look for him. My brother lives two hours away and took off to mama's

and went looking for him. My brother called his friends to help

search for him and my best friend from High School lives there so I

called her and she went looking for him. This was the worst day of

my life. I couldn't do a thing to help. My best friend found him

sitting in the parking lot of Home Depot. She didn't approach him

but called my brother who went to where he was at. He looked so lost

and confused I was told.

I had already made plans before this episode to fly out there on a

Friday to help mama for a week. Well my plans were stepped up by two

days and I flew to Louisiana the very next day. Mama had made the

decision to go ville, Florida where the Mayo Clinic was at.

Well this was for the best. I went with them and within 10 minutes

of seeing the doctor we were told Daddy suffered from all the

symptoms of LBD. We had never heard of it until then. We were glad

we had found the answers and daddy was put through a series of

tests. Where they found he had Lung Cancer along with other minor

things. I can not say enough about the Mayo Clinic in Florida. They

actually care about their patients.

I was able to be with mama through the beginning but now I am here

in California and not able to help. Except for listening when mama

needs to cry, talk or even laugh with. I have always been a " Daddy's

Girl " and I am losing my Daddy. I am not ready for this to happen. I

know that is selfish but that is how I feel. I am going home after

my kids get out of school in June. I want them to see their

grandfather. My children have always been so very close to my daddy,

especially my son, who is 15 now. If I could move back to Louisiana

to help my mom with my daddy I would in a heartbeat. I am unable to

because I am not able to move my children out of state.

I know this seems like I am rambling on and I am very sorry. This

has been inside me and I have not had anywhere to talk about it. My

mom needs me, my brother needs me, my kids need me, and most of all

my daddy needs me. I still need my daddy though. I don't know what

to expect with this disease or how long we do have with daddy. If

anyone can help I would really appreciate it. I want to know how I

can help my mom, brother and children through this.

Thank you for taking the time to read this email and hope it made

some sense, as I am crying as I type.

Take Care,

Welcome to LBDcaregivers.

------------------------------------------------------------------------------

[Guest guest]

,

One of the best things you can do for your mom is listen. Yes, we have this

wonderful group here that can listen and share, but we don't know your daddy.

You can share memories with her and talk of the good times. Sometimes an " I

love you " is the thing a caregiver needs most.

I live in Texas and I have my Daddy will LBD and my Mama with early Alzheimer's

living with me. My daughter lives out of state and has a family of her own. I

know she wants to help, but right now, her family needs her most. We spend

hours on the phone each week. Thank heavens for cell phone plans with generous

night and weekend minutes!

Right now, I am at my daughter's house with my mother taking a much needed break

(sort of since Mama needs some care). I left Daddy with the care giver, my

husband, and my 21 year old son (with Asperger's). Of course Daddy picks this

week to start some new behaviors. I wish I could be there to help out, but I'm

not sure what I could do that isn't already being done.

This has turned in to a longer message than I planned. I just wanted to tell

you that I'm sure your mother knows you want to help, and that knowldege in

itself is comforting.

Margee

[Guest guest]

Hi Margee,

Thank you for responding back. I just talked to my mama and she has

been reading the posts. She wanted to thank me for listening. I

guess that is all I can do for now. She knows I am here for her no

matter what. You are right thank goodness for cell phone plans. We

have the same cell service so we have free mobile to mobile. While

they were in Florida we talked up to 3 or 4 times a day. It was one

way for me to be there.

I am really glad you are getting the much needed rest you need. I

keep telling mama she needs some " ME " time. She is going to wear

herself out and get sick. She will not be able to help daddy then. I

not only worry about my daddy, but my mama as well. My lil' brother

(he hates when I call him that..lol) has been a BIG help to mama. He

is there whenever she needs him. He has a family of his own and

working a lot, but is always there for mama. Sam, if you are reading

this...I Love you little brother.

Margee thank you for your kind words and support. It does help a

lot.

Take care and you hang in there as well,

[Guest guest]

Hi Kathleen,

I am so sorry to hear about the loss of your father. I know it is

hard on you and your family. Your family will be in my thoughts and

prayers.

When daddy was diagnosed at the Mayo Clinic in Florida, Mama and I

were doing research in the motel. We never heard anything about it.

Boy did we learn some things.

I am happy that you lived so close and were able to see your daddy

as often as you wanted. I have mama give daddy hugs from me all the

time.Your ideas about what I can do, recording the kids and I,

emails...etc... are a wonderful idea. I was talking to mama this

morning about that. We have already been collecting things for a

scrapbook about the journey we are going to be going through.

Your story had me crying this morning because of the loss of your

father and also, knowing that my family will be going through the

same thing. Thank you so much for sharing.

Hugs,

---Southern California

> Hi ,

>

> I am Kathleen and I live in Scotland.

>

> I lost my daddy 5 weeks ago, he died from LBD. He had had the

symptoms for about 6 years and was diagnosed 3 years before his

death.

>

> We too knew nothing of Lewy Boyd but boy we became fast learners.

My dads symptoms were at first thought to be Vascular Dementia - a

series of tiny mini strokes causing odd behaviours. He DID have

Vascular Dementia but Lewy Body was the predominant illness.

>

> We took care of him at home for 2 years, this was really really

tough. My mum who was 75 at the time was main caregiver, but my

sister and I both only live 15 minutes away from their home. We

both also work from home so were able to commit a lot of time to

help mum caring for my dad. We went to their house every day for 2

years taking alternate days each, our lives and families put on the

back burner. We cooked, cleaned, took care of their money &

business, arranged all the care help, doctors, consultant, community

nurse, home care, oversaw any medical appointments. Shopped for

them, paid their bills, collected their banks and pension money, and

on top of this took care of my dads every progressive need.......the

first year wasn't so bad but the 2nd year was VERY tough.

>

> We had many many crisis during this time. Like you though once my

dad was diagnosed we went into shock. It took us some time to

realise and come to terms with the fact my dad had essentially a

terminal illness.

>

> The features and symptoms of Lewy Body Dementia appear one by

one. The disease NEVER stays the same, it fluctuates up and down

and in all directions - just to confuse the carers as well as the

patient. It is a very difficult disease to care for as you never

know from one day to the next what your getting and no two patients

react the same way. With LBD there are GOOD days with a lot of

cogniscance......unlike Alzheimers which is the constant slow

downward decline. Lewy goes Up/down Up/down Up/down. In year 3 my

dad was getting very ill with constant infections, chest infection,

urine infection, kidney infection - all caused by his immobility and

spells of Lewy Body which would really lay him low.....constant

bouts of agitation would keep him up all night long rambling, then

on the down time he'd sleep 24 hours straight, this erratic pattern

meant he wasn't eating/drinking/getting meds as normal - thus the

infections. He also had many falls with lewy Body which then made

him hesitant at times to move - immobility also causes infection.

>

> Eventually into year 3 after actual diagnosis (but probably year 6

of the actual disease) we had to look at permanent care as we could

no longer cope. We were lucky finding a local hospital Dementia

unit and the Consultant who cared for my dad onhome visits was able

to oversee him, the care was good but it was so heartbreaking to

move my dad finally from his home - it's something I don't think

I'll ever really get over.

>

> He was there for one year and 5 days before he died. The care was

great, we still visited every day and participated a lot in his

daily routine. Took him out almost every day, he had his own little

room and we furnished it with his own things & his tv & videos and

family photos, his room looked out onto a little courtyard garden

which we used often. But the disease progressed and he just broke

down under it and evnetually lost most of his functions, speech

went, appetite went, mobility went, he had constant infections and

the neurological damage finally got beyond what his body could fight.

>

> Even as I write to you now I cannot believe he is gone, it is

devastating, but this is Lewy Body. I'm trying here just to let you

see that even though your at a distance it's the same for those of

us who are on hand to help. Sure I have the 'comfort' now of

knowing I did all that I could throughout my dads illness and

hopefully we were a comfort to him, but now that he's gone enough

never seems to feel like enough. I absolutely ACHE for what your

going through right now, please just know that your not alone out

there.

>

> Obviously your circumstances are such that you have to be at a

distance, so content yourself with long distance care. Write to

your dad and have someone read your letters to him if he can't read

them himself. Better still record some tapes and send them, little

cassettes of day to day life with your kids, I'm sure he'd LOVE

that, hearing your voice and his grand-kids, there ARE things you

can do to help. Taking regular vacations to see him as you can

afford, offering your mom somewhere to run to when SHE needs a

vacation (and she will need one believe me) if someone else in the

family can look after dad your mom can have a break.........send him

treats by post....simple things, sweets that he likes or a video or

dvd that he likes. And obviously you have access to the net,

research his illness, gather information, print off fact sheets,

make a diary of his days as you hear them from your mom - this can

be really useful in doctors appointments and your family who are

caring for dad will be too exhausted to do it.

>

> Don't feel your at a distance because there are miles between you -

contact him daily by e.mail if your brother has a computer....get

him to print off your daily or weekly e.mails for daddy......tell

him how much you love him and hug him from afar.....he can still

listen and he will still understand.

>

> As for the disease itself, well there ARE good drugs out there

that help a lot with the hallucinations and other symptoms. In the

first year my dad was on Seroquel which worked well with calming the

hallucinations, it didn't take them away completely but it helped

them become less and manageable. Second year he went onto Exelon

which for us was the BEST LBD drug....it gave him back great

mobility which fast seemed to be disapearing and helped enormously

with other things like peaceful sleep, helped him be more

articulate, balance got better........but both of these drugs seemed

to have a shelf life of about a year. In the third year he went

onto Reminyl which again helped, kept his mood very happy, but by

this time the disease was taking over and getting beyond the drugs

really. All of these drugs however work differently on every

different LBD patient (another frustrating aspect of the disease)

what works well for one may not work well for another, so they HAVE

to be overseen by someone competent like a Physco-Geriatrician,

we're very lucky here in the UK to have good consultant care that is

free.

>

> I know EXACTLY how your feeling right now, like you have the

weight of the world on your shoulders, but your dad could still have

a way to go in his illness yet, again everyone progresses

differently. Even with the illness though he can still find good

moments with you, send him a favourite teddy bear or something, tell

him you sent it to watch over him and keep him company as you can't

be there, it's amazing what brings comfort. We were lucky, I could

hold & hug and kiss my dad every single day, but dealing with the

illness close up and personal was also really really difficult so

there's no easy answers out there.

>

> Try and arm yourself with information that will help you

understand what he and your family will be going through and just

try to accept what you have left of him WHILE you can, there will be

precious moments in there as well, it's not all gloom and doom, just

know that lots of others on here know what your going through and

will do anything they can to help.

>

> Sending hope, courage and hugs your way.

>

> Kathleen - Scotland.

> My Daddy

>

>

> Hi,

>

> I am very new to this group. My brother found the group and

joined.

> He then passed it on to my mom who is taking care of my daddy

who

> was diagnosed with LBD in February. My brother is

elevatorman71360.

>

> It is hard for me because I live in California and the rest of

my

> family lives in Louisiana. I do not feel like I am able to help

with

> the care of my daddy, as I am so far away. I am a single mom,

> raising two children, working full-time and going to school full-

> time. I feel so helpless not being able to help my mom with

daddy.

>

> We did not find out what was wrong with him until February. We

knew

> something was wrong but we were receiving no answers from the

> doctors in Louisiana. It seemed like they were giving us the

> runaround. Finally his Cardiologist told my mom that if it was

his

> spose he would recommend the Mayo Clinic. Well mama said she

would

> think about it. It took a week to think about it because my dad

had

> a " bad episode. " He took off while my mom was in the other room

and

> we didn't know where he went. He was hallucinating, forgetting

where

> he was, getting loss...etc... I was in California and unable to

help

> look for him. My brother lives two hours away and took off to

mama's

> and went looking for him. My brother called his friends to help

> search for him and my best friend from High School lives there

so I

> called her and she went looking for him. This was the worst day

of

> my life. I couldn't do a thing to help. My best friend found him

> sitting in the parking lot of Home Depot. She didn't approach

him

> but called my brother who went to where he was at. He looked so

lost

> and confused I was told.

>

> I had already made plans before this episode to fly out there on

a

> Friday to help mama for a week. Well my plans were stepped up by

two

> days and I flew to Louisiana the very next day. Mama had made

the

> decision to go ville, Florida where the Mayo Clinic was

at.

> Well this was for the best. I went with them and within 10

minutes

> of seeing the doctor we were told Daddy suffered from all the

> symptoms of LBD. We had never heard of it until then. We were

glad

> we had found the answers and daddy was put through a series of

> tests. Where they found he had Lung Cancer along with other

minor

> things. I can not say enough about the Mayo Clinic in Florida.

They

> actually care about their patients.

>

> I was able to be with mama through the beginning but now I am

here

> in California and not able to help. Except for listening when

mama

> needs to cry, talk or even laugh with. I have always been

a " Daddy's

> Girl " and I am losing my Daddy. I am not ready for this to

happen. I

> know that is selfish but that is how I feel. I am going home

after

> my kids get out of school in June. I want them to see their

> grandfather. My children have always been so very close to my

daddy,

> especially my son, who is 15 now. If I could move back to

Louisiana

> to help my mom with my daddy I would in a heartbeat. I am unable

to

> because I am not able to move my children out of state.

>

> I know this seems like I am rambling on and I am very sorry.

This

> has been inside me and I have not had anywhere to talk about it.

My

> mom needs me, my brother needs me, my kids need me, and most of

all

> my daddy needs me. I still need my daddy though. I don't know

what

> to expect with this disease or how long we do have with daddy.

If

> anyone can help I would really appreciate it. I want to know how

I

> can help my mom, brother and children through this.

>

> Thank you for taking the time to read this email and hope it

made

> some sense, as I am crying as I type.

>

> Take Care,

>

>

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

>

>

> -------------------------------------------------------------------

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>