Re: New Member - Here's my story.

[Guest guest]

Hi, and welcome to the group. I am so sorry about your dad. He sounds like

an incredible person. I know you are very proud of him. My dad is 75 and is

my LO with LBD. He lives at home with us, and it is often a struggle.

I am in a real estate related field (land development) so I understand how it

is difficult for you to take time off. I think I probably have struggled

with many of the issues that you are dealing with now. Somehow, you will find

time when you need to.

I have to run home now, but I wanted to give you a quick welcome. I look

forward to seeing your posts here. It is a great group of people.

Sending hugs your way,

Piper

[Guest guest]

Olivier,

Welcome to the group. My father is also 77 and has LBD. I am 41.

I have a son who is 20 and one who is 21. You sound like a

remarkable young man who has been through quite alot in your short

21 years. I can not even imagine what it must be like dealing with

this disease at such a young age. I know how hard it is for my boys

to see their grandfather this way, but it must be so much harder

watching your dad. You have found a wonderful place to be to vent,

find comfort and advice. Lots of information in the files section,

although you seem to be pretty knowledgable already. I am impressed.

I am sure that your mom understands that you can't be with her.

Sounds to me like you are very supportive from a distance to the

best of your ability. I am a mom and I am sure she loves getting

the frequent phone calls through the week. I know I would. If your

mom is into the net, there is a group here for spouses of LBD

victims also. Maybe she would be interested in joining. I really

don't know what to say to help you cope, Olivier. I have lost 1

parent, my mom, 3 years ago to cancer. It is a very hard thing to

watch someone you love suffer. Don't isolate yourself. If you

can't be with your mom, find someone to talk to. A friend,

relative, minister, whoever.....find someone to share your feelings

with. Don't try to do it alone. You need the support. You can

always come here. There is always someone here who will listen. We

may not always have all the answers but we are great listeners.

Take care and I hope you find the comfort and support you are

looking for here.

Donna L

> (AFter writing this message, I realize how long it is, sorry, I

tend

> to ramble, but this is my story)

>

> Hello All. I am so happy to have the oppertunity to finally talk

to

> others who are dealing with this terrible condition that not

affects

> the infected individual but also all around them. My father has

been

> ill since a tumor was removed from his stomach almost ten years

ago.

> For the next few years we noticed only minor cases of confusion,

> dizzyness, and other physically debilitating things.

>

> Every day it seemed, his health was decreasing without any of us

in

> the family or even his doctors knowing why. Like most people with

> LBD, he was first diagnosed with Parkinsons about 4 years ago.

After,

> we had doctors telling us he also had Alzheimers. Lately, within

the

> last year, he has been diagnosed conclusively with LBD.

>

> My situation is very hard because my whole life I have lived with

the

> thought that my now 77 year old father has always been older than

my

> peers parents, seeing that I am now 21. I do remember us playing

> baseball, going to see hockey games together, going on trips,

playing

> golf, and him always being in a great mood. I never once (ok, ...

> maybe once or twice) heard my parents fighting, or even my father

> ever raising his voice.

>

> He was also an extremely intelligent man. We are Canadian, and he

was

> a very influential cabinet minister and deputy prime-minister in

the

> Pierre Trudeau cabinet. I always say to people when they ask me

about

> my father, that, 'He lived such an incredible life, he used his

brain

> so much to help people and the country as a whole that now, his

brain

> is getting tired and needs to rest.'

>

> These days, his disease has progressed to a level where after a

while

> with full-time home care, my mother and I have made the decision

to

> put him into a 'retirement community' (as I like to call it) with

24

> hour supervised care, referred to as 'assisted living'.

>

> I also have this terrible feeling all day every day that I don't

have

> a word for. Basically, I finished high school in my hometown of

> Ottawa, and then moved to Toronto for my current career in Real

> Estate. It is a very demanding job and I hardley ever have time

for

> the five hour drive home to see my mother and father. I do manage

to

> get home at least once a month.

>

> I dont know who I need to help more... my mom or my dad. I have

not

> spoken to my father (at least had a real conversation) on the

phone

> for a long time because it is too difficult for him to call me,

and

> if he gets through to me, he speaks in gibberish or just mumbles.

>

> My mom, on the other hand, I speak to many times in a week. She

keeps

> me informed, but I can tell she is not happy, in any way. She is a

> very strong woman, french Canadian, who always looks at the best

or

> happiest in every situation, but I think she has ran out. She sees

> him every day and takes care of him as best she can, tries to keep

> him lively and 'up' but some days she feels like he cant

understand

> what she is saying, and he cant communicate. Other days, however

he

> is very lucid and clear. It is very rough on her, since they have

> been together for almost 25 years, and this is the first time he

has

> lived in another place.

>

> The last time I went home was the first time I saw him in

> the 'retirement community' and he is not well. It went from the

cane,

> to the walker, to the wheelchair. It is so hard to see him like

that,

> because it is not the man I know, and I have realized I will never

> see my 'DAD' agian, but I still care for him with all my heart,

and

> think about him all the time, but I dont know if he knows that is

> that.

>

> I often think of dropping everything here, and moving home for a

> month or two, but I realistically can not do that. Mainly due to

> money, and I think that is so sad of myself. I'm terrible that

way, I

> cant make time for my own family!

>

> We heard about a month ago a time frame for him, we heard 2 years.

> Which is a long time until you break it down. If I go down max.

once

> a month, does that mean I will see him another 24 times? Well,

now,

> 22 times. And what do I do the 19th, 20th, 21st time? I cant even

> bring myself to leave him when I do go down to see him now, I dont

> know how I am going to be able to handle this next couple of years.

>

> I'd love to hear from anyone ... again, sorry for the lengthof

this

> note

>

> Help me! I'm all alone! If anyone lives in the Toronto area, feel

> free to send me a message, maybe we can just chat, a voice really

> helps!

>

>

> Thanks all, sorry for the rambling!

[Guest guest]

Hiand welcome to the group. What name can we call you?

I'm sorry you are going through such a hard time.

This disease does take a toll on everyone. It really turns your life upside down

but you will get through it. Some days i think i'm just going to break but i do

make it to the next day.

It is such a rollercoaster and you just want to get off!

You will find many wonderful people here and will give you much needed support.

People here understand and we also have wonderful people who have lost their

LO's to LB and are still here helping us still fighting this beast.

My mom was also dx with PD 7 years ago. She was dx with LB 10 months ago. She is

in a NH and my sister or i are there every night with her. It breaks my heart.

She is one of the best friends i ever had an a wonderful mother and grandma.

You have found a good place to be here.

Hugs-

Sharon

New Member - Here's my story.

(AFter writing this message, I realize how long it is, sorry, I tend

to ramble, but this is my story)

Hello All. I am so happy to have the oppertunity to finally talk to

others who are dealing with this terrible condition that not affects

the infected individual but also all around them. My father has been

ill since a tumor was removed from his stomach almost ten years ago.

For the next few years we noticed only minor cases of confusion,

dizzyness, and other physically debilitating things.

Every day it seemed, his health was decreasing without any of us in

the family or even his doctors knowing why. Like most people with

LBD, he was first diagnosed with Parkinsons about 4 years ago. After,

we had doctors telling us he also had Alzheimers. Lately, within the

last year, he has been diagnosed conclusively with LBD.

My situation is very hard because my whole life I have lived with the

thought that my now 77 year old father has always been older than my

peers parents, seeing that I am now 21. I do remember us playing

baseball, going to see hockey games together, going on trips, playing

golf, and him always being in a great mood. I never once (ok, ...

maybe once or twice) heard my parents fighting, or even my father

ever raising his voice.

He was also an extremely intelligent man. We are Canadian, and he was

a very influential cabinet minister and deputy prime-minister in the

Pierre Trudeau cabinet. I always say to people when they ask me about

my father, that, 'He lived such an incredible life, he used his brain

so much to help people and the country as a whole that now, his brain

is getting tired and needs to rest.'

These days, his disease has progressed to a level where after a while

with full-time home care, my mother and I have made the decision to

put him into a 'retirement community' (as I like to call it) with 24

hour supervised care, referred to as 'assisted living'.

I also have this terrible feeling all day every day that I don't have

a word for. Basically, I finished high school in my hometown of

Ottawa, and then moved to Toronto for my current career in Real

Estate. It is a very demanding job and I hardley ever have time for

the five hour drive home to see my mother and father. I do manage to

get home at least once a month.

I dont know who I need to help more... my mom or my dad. I have not

spoken to my father (at least had a real conversation) on the phone

for a long time because it is too difficult for him to call me, and

if he gets through to me, he speaks in gibberish or just mumbles.

My mom, on the other hand, I speak to many times in a week. She keeps

me informed, but I can tell she is not happy, in any way. She is a

very strong woman, french Canadian, who always looks at the best or

happiest in every situation, but I think she has ran out. She sees

him every day and takes care of him as best she can, tries to keep

him lively and 'up' but some days she feels like he cant understand

what she is saying, and he cant communicate. Other days, however he

is very lucid and clear. It is very rough on her, since they have

been together for almost 25 years, and this is the first time he has

lived in another place.

The last time I went home was the first time I saw him in

the 'retirement community' and he is not well. It went from the cane,

to the walker, to the wheelchair. It is so hard to see him like that,

because it is not the man I know, and I have realized I will never

see my 'DAD' agian, but I still care for him with all my heart, and

think about him all the time, but I dont know if he knows that is

that.

I often think of dropping everything here, and moving home for a

month or two, but I realistically can not do that. Mainly due to

money, and I think that is so sad of myself. I'm terrible that way, I

cant make time for my own family!

We heard about a month ago a time frame for him, we heard 2 years.

Which is a long time until you break it down. If I go down max. once

a month, does that mean I will see him another 24 times? Well, now,

22 times. And what do I do the 19th, 20th, 21st time? I cant even

bring myself to leave him when I do go down to see him now, I dont

know how I am going to be able to handle this next couple of years.

I'd love to hear from anyone ... again, sorry for the lengthof this

note

Help me! I'm all alone! If anyone lives in the Toronto area, feel

free to send me a message, maybe we can just chat, a voice really

helps!

Thanks all, sorry for the rambling!

Welcome to LBDcaregivers.

[Guest guest]

Hello Oliver,

You asked for someone who lives in Toronto and you've just found her! My

name is Gourete Broderick but everyone here knows me by name pen name

" Courage " . Where in the city do you live? Perhaps we can get together for

coffee and talk about what's happening to our LO (loved ones). In my case,

its my mother who has LBD and she is quickly declining. Please let me know

if you'd like to get together.

Courage

New Member - Here's my story.

>(AFter writing this message, I realize how long it is, sorry, I tend

>to ramble, but this is my story)

>

>Hello All. I am so happy to have the oppertunity to finally talk to

>others who are dealing with this terrible condition that not affects

>the infected individual but also all around them. My father has been

>ill since a tumor was removed from his stomach almost ten years ago.

>For the next few years we noticed only minor cases of confusion,

>dizzyness, and other physically debilitating things.

>

>Every day it seemed, his health was decreasing without any of us in

>the family or even his doctors knowing why. Like most people with

>LBD, he was first diagnosed with Parkinsons about 4 years ago. After,

>we had doctors telling us he also had Alzheimers. Lately, within the

>last year, he has been diagnosed conclusively with LBD.

>

>My situation is very hard because my whole life I have lived with the

>thought that my now 77 year old father has always been older than my

>peers parents, seeing that I am now 21. I do remember us playing

>baseball, going to see hockey games together, going on trips, playing

>golf, and him always being in a great mood. I never once (ok, ...

>maybe once or twice) heard my parents fighting, or even my father

>ever raising his voice.

>

>He was also an extremely intelligent man. We are Canadian, and he was

>a very influential cabinet minister and deputy prime-minister in the

>Pierre Trudeau cabinet. I always say to people when they ask me about

>my father, that, 'He lived such an incredible life, he used his brain

>so much to help people and the country as a whole that now, his brain

>is getting tired and needs to rest.'

>

>These days, his disease has progressed to a level where after a while

>with full-time home care, my mother and I have made the decision to

>put him into a 'retirement community' (as I like to call it) with 24

>hour supervised care, referred to as 'assisted living'.

>

>I also have this terrible feeling all day every day that I don't have

>a word for. Basically, I finished high school in my hometown of

>Ottawa, and then moved to Toronto for my current career in Real

>Estate. It is a very demanding job and I hardley ever have time for

>the five hour drive home to see my mother and father. I do manage to

>get home at least once a month.

>

>I dont know who I need to help more... my mom or my dad. I have not

>spoken to my father (at least had a real conversation) on the phone

>for a long time because it is too difficult for him to call me, and

>if he gets through to me, he speaks in gibberish or just mumbles.

>

>My mom, on the other hand, I speak to many times in a week. She keeps

>me informed, but I can tell she is not happy, in any way. She is a

>very strong woman, french Canadian, who always looks at the best or

>happiest in every situation, but I think she has ran out. She sees

>him every day and takes care of him as best she can, tries to keep

>him lively and 'up' but some days she feels like he cant understand

>what she is saying, and he cant communicate. Other days, however he

>is very lucid and clear. It is very rough on her, since they have

>been together for almost 25 years, and this is the first time he has

>lived in another place.

>

>The last time I went home was the first time I saw him in

>the 'retirement community' and he is not well. It went from the cane,

>to the walker, to the wheelchair. It is so hard to see him like that,

>because it is not the man I know, and I have realized I will never

>see my 'DAD' agian, but I still care for him with all my heart, and

>think about him all the time, but I dont know if he knows that is

>that.

>

>I often think of dropping everything here, and moving home for a

>month or two, but I realistically can not do that. Mainly due to

>money, and I think that is so sad of myself. I'm terrible that way, I

>cant make time for my own family!

>

>We heard about a month ago a time frame for him, we heard 2 years.

>Which is a long time until you break it down. If I go down max. once

>a month, does that mean I will see him another 24 times? Well, now,

>22 times. And what do I do the 19th, 20th, 21st time? I cant even

>bring myself to leave him when I do go down to see him now, I dont

>know how I am going to be able to handle this next couple of years.

>

>I'd love to hear from anyone ... again, sorry for the lengthof this

>note

>

>Help me! I'm all alone! If anyone lives in the Toronto area, feel

>free to send me a message, maybe we can just chat, a voice really

>helps!

>

>

>Thanks all, sorry for the rambling!

>

>

>

>

>

>

>Welcome to LBDcaregivers.

>

>

>