Re:Daddy is going away from us

October 27, 2011

A few weeks ago I sat with my Dad and he was smiling and alert - we had actual

conversations and even stories that day and he is so sweet and funny and witty -

and he was Dad. I wish I wrote down the date to treasure the day - but I took

it for granted that I would have those days forever.

He has been sick for several years, with many ups and downs and 2 bad falls -

one in 2010 and one in 2011 - with the drugs mistakenly given to him by EMTs and

the disruption of being in hospital and rehab - he got very bad - with

hallucinating and not being able to stand and walk. He wanted to come home - so

badly - so he overcame everything.

Now he has been home for 4 months - and it was a good 4 months. Then 2 weeks

ago he fell again in the bathroom and hit his head. Doctor said he is OK and we

took him home and he has been going away - I think he is on the journey now of

going away from us. Yesterday was my turn to care for him. He could not have a

conversation or even answer a simple question. He can't stand up- he can with

lots of work and help stand up. When he walks - hard to explain - looks

unsteady, like he is on a moving ship, looks like a drunk sailor, looks like his

feet are going to cross - or that he is so light he is going to float up into

the air.

He is very skinny and losing weight at a rapid rate. He eats good, but doctor

says that Parkinsons burns alot of calories - so you have to take in more. I

want to give him the high- calorie drinks, but my sister says why bother or

something like that. She takes such good and loving care of him, but she and my

mom are so burnt out. He gets up or tries to get up 10 to 12 times a night. He

is confused and hallucinating and can barely get out one word - a few weeks ago

he did say " its my head, my head ! its not working right ! " So he was aware.

Now I don't think he has the self-awareness and we are definitely losing him. I

don't think he will last the winter. But when I think of him, I think of the

real - not this very thin till person - this is not him. My heart hurts

so much right now, that I have let the reality in. I have had a wall up for so

long and it crumbled yesterday.

When I was a little girl, Dad did so many fun things with me - he was so fit and

so much fun. Fishing, catching frogs and climbing trees - thats my memories.

He took me ice-skating and he wore figure skates and he was doing a figure

skating routine that he taught himself. A lady at the skating pond said to me

" Wow, your brother is a good skater !! " and I said " Thats my Daddy ! " He was

like a really fun big brother ! He is so special and I can't believe this is

HIM now and he is getting ready to go on the " Journey " to the afterlife now.

October 27, 2011

Hi

You are not alone !I feel for you as your dad deteriorates from this evil

disease - I watched my mom go from being a regular person in 2009 to a complete

invalid and totally demented now ! when she could talk she also would express

that something wasn't right - amd like your dad i think the numerous falls she

took before the late stages took hold, especially like your dad when she hit her

head !

A surprise to me is that you wrote is that he smiled- generally LBD takes away

the ability to smile or make any movements that express emotion in the face-

Just to prepare you eventually btw your dad will be unable to speak at all, not

know who you are and will also become urine and bowel incontinent - of course

every case Is different -

And although your dear dad is barely able to walk unassisted and is losing

weight - which I think is more related to not metabolizing the food than being

do to the parkinsons -

you have to Be prepared that the journey out of this world from LBD is not

always so easy and quick! Unless there is a complication many can linger long

after the diagnosis amd decline in later stages of the disease !

Another highlight of this evil plague is patients taking one step forward and 2

steps back - 4 monthes ago my mom looked like she was on deaths door - she is

decking now again but made some

Recovery app 2 months ago -

I don't want to bring you down - but be prepared for anything including your dad

sticking around longer than you think !

Eventually if your family is anything like ours you mogjt welcome the gift of

your dad leaving us sooner than later - since seeing the essence of who they

were has dies already !

Check into home care Medicaid - all states have different rules but it can help

you to maintain your dad at home and Preserve funds ibefore they are consumed by

The health care - I understand your family and You have been caring for dad - it

might make sense to

Get help with his care since the Burnout rate and Caregiver propensity to get

sick too is high !!

You are not alone and I wish you strength and. Resilience over this time -

God bless

Judy

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Cell-

Email- Jrstr@...

> A few weeks ago I sat with my Dad and he was smiling and alert - we had actual

conversations and even stories that day and he is so sweet and funny and witty -

and he was Dad. I wish I wrote down the date to treasure the day - but I took it

for granted that I would have those days forever.

>

> He has been sick for several years, with many ups and downs and 2 bad falls -

one in 2010 and one in 2011 - with the drugs mistakenly given to him by EMTs and

the disruption of being in hospital and rehab - he got very bad - with

hallucinating and not being able to stand and walk. He wanted to come home - so

badly - so he overcame everything.

>

> Now he has been home for 4 months - and it was a good 4 months. Then 2 weeks

ago he fell again in the bathroom and hit his head. Doctor said he is OK and we

took him home and he has been going away - I think he is on the journey now of

going away from us. Yesterday was my turn to care for him. He could not have a

conversation or even answer a simple question. He can't stand up- he can with

lots of work and help stand up. When he walks - hard to explain - looks

unsteady, like he is on a moving ship, looks like a drunk sailor, looks like his

feet are going to cross - or that he is so light he is going to float up into

the air.

>

> He is very skinny and losing weight at a rapid rate. He eats good, but doctor

says that Parkinsons burns alot of calories - so you have to take in more. I

want to give him the high- calorie drinks, but my sister says why bother or

something like that. She takes such good and loving care of him, but she and my

mom are so burnt out. He gets up or tries to get up 10 to 12 times a night. He

is confused and hallucinating and can barely get out one word - a few weeks ago

he did say " its my head, my head ! its not working right ! " So he was aware. Now

I don't think he has the self-awareness and we are definitely losing him. I

don't think he will last the winter. But when I think of him, I think of the

real - not this very thin till person - this is not him. My heart hurts

so much right now, that I have let the reality in. I have had a wall up for so

long and it crumbled yesterday.

>

> When I was a little girl, Dad did so many fun things with me - he was so fit

and so much fun. Fishing, catching frogs and climbing trees - thats my memories.

He took me ice-skating and he wore figure skates and he was doing a figure

skating routine that he taught himself. A lady at the skating pond said to me

" Wow, your brother is a good skater !! " and I said " Thats my Daddy ! " He was

like a really fun big brother ! He is so special and I can't believe this is HIM

now and he is getting ready to go on the " Journey " to the afterlife now.

>

October 27, 2011

It is very difficult, I agree ...stressful for all but most especially

for the LBDer himself. Seeing them change and leave us slowly is

horrible. This is an awful disease.

My situation is a little different, in that my mom and I haven't been

close in many years, and I don't have a lot of happy childhood memories

with her. Because of her dependence on me now, we are probably closer

than we've ever been, which is sad in itself. While her behaviors and

cognition is affected, her personality - even her sense of humor -

remains intact. At this point she still laughs and enjoys life IN THE

MOMENT for the most part, as her delicate medication balance is helping

to keep the hallucinations and paranoid delusions to a minimum. A

blessing...

I'm glad that are able to spend some time with your dad now. Often there

are periods of lucidity even toward the last days of the disease's

progress, and I hope that you are there for those, as it may give you

comfort. Even now, and even if you don't think your dad is

understanding, you might want to share some of your happy memories with

him in your conversation. It may register somewhere in his mind with him

even if you can't tell .

--

His,

Sherry

daughter/guardian of , dx 4/09 with LBD, living in a nearby NH